NOTE: UNEDITED DOCUMENT

                        UNITED STATES OF AMERICA

PRESIDENTIAL ADVISORY COMMITTEE

ON GULF WAR VETERANS' ILLNESSES



PUBLIC MEETING

February 27, 1996

1
* * * * * * *

CLINICAL SYNDROMES PANEL MEETING

* * * * *
Sheraton Gunter Hotel

205 East Houston Street

San Antonio, Texas



APPEARANCES:

Advisory Board Members Present:

Joyce C. Lashof, M.D., Committee Chair

Kelley Brix
Joseph Cassells
Holly Gwin
Thomas McDaniels
Philip J. Landrigan, M.D.
Elaine L. Larson, R.N., Ph.D.
Major Marguerite Knox, R.N.C., M.N., C.C.R.N.
Rolando Rios
Andrea Kidd Taylor, Dr.P.H.


2


APPEARANCES (CONTINUED):

Public Presenters:

Sgt. Robert Casarez
Joey Laske
Kathy Hughes
Capt. Victoria Kilcawley
Victor Sylvester
Sally Medley
Shannah Clark
Ronald Matthews
Dr. Lawrence Plumlee
Wendy Wendler
Antonio Melchor
Sgt. Paul Lyons
Betty Zuspann
Charles Townsend
Joyce Riley
Joanne Rigdon
Sandy Gragg

Medical Presenters:

Dr. Claudia Miller
Dr. Nelson Gantz
Dr. Daniel Clauw
Dr. Edward Hyman
Dr. Garth Nicholson


2


1 P R O C E E D I N G S

2 DR. LANDRIGAN: Good morning. My name is Dr.
3 Philip Landrigan. I am a medical doctor and chairman of
4 the Department of Community Medicine at Mt. Sinai Medical
5 School in New York City. I am a member of this panel and

6 I am pleased to call the meeting to order this morning.


7 The purpose of this meeting is to take public

8 commentary on the issues that surround the illnesses of

9 the Gulf War Veterans. We are going to hear this morning

10 from a series of members of the public. And may I ask any


11 member of the public who is on the witness list who hasn't

12 yet signed in, please do so because there is a half-dozen

13 who have not yet done so. Let us know that you are here

14 so that you will get your slot.


15 And then this afternoon, we are going to hear

16 from a number of scientists who have done research on

17 various aspects of the Gulf War Veterans. What I would


18 like to do at this point to get us started is to have the

19 members of the panel introduce themselves to you. Start

20 with our Chair, Dr. Lashof, and then everybody else.

21 Just introduce yourself, please.


22 DR. LASHOF: I am Dr. Joyce Lashof. I am chair

3


1 of the Presidential Advisory Committee and I am anxious to

2 here the presentations today.

3 MAJOR KNOX: I am Marguerite Knox. I am from


4 Columbia, South Carolina and I was a veteran in Desert

5 Storm and was stationed at King Kahlad military city with

6 the Army Nurse Corps.


7 MS. GWIN: I am Holly Gwin. I am a member of

8 the Advisory Committee staff.

9 DR. LANDRIGAN: I don't think these mikes are

10 working properly or at least not all of them, if somebody


11 will check. Good morning. And now it is my pleasure to

12 introduce Mr. Rolando Rios, who is a member of this

13 commission and a son of San Antonio.

14 MR. RIOS: Thank you. I am Rolando Rios. I am


15 a veteran of the Vietnam War and a member of this

16 committee. Thank you for being here.

17 DR. LARSON: Good morning. My name is Elaine


18 Larson. I am a nurse from Georgetown University.

19 DR. TAYLOR: Good morning. I am Dr. Andrea

20 Kidd Taylor. I am an industrial hygienist with the United

21 Auto Workers' Health and Safety Department.


22 MR. CASSELLS: I am Joe Cassells. I am a


4


1 clinical consultant to the Advisory Committee.

2 DR. BRIX: I am Kelley Brix and I am an

3 epidemiologist and I staff for the committee.


4 MR. MCDANIELS: I am Tom McDaniels. I am

5 committee staff.

6 DR. LANDRIGAN: Okay. Well, thank you all.


7 And thank you, all the members of the public who are here.

8 Now I will just proceed. Let's see. Members will come to

9 the podium here for their testimony. And our first

10 presenter this morning is Mr. Robert Casarez. Mr.


11 Casarez, please come forward.

12 Before Mr. Casarez begins, could I remind all

13 the public witnesses that we have a very full schedule

14 this morning. The -- each speaker is limited to about


15 five minutes. I know this is too brief. I know that your

16 concerns are profound. We are not cutting it short to

17 show any disrespect to you but in order to give every


18 person a chance to express their testimony, we need to

19 stay to schedule.

20 So please respect that. And Mr. McDaniels will

21 hold up this yellow ticket when you get down to the last


22 60 seconds. Thanks.








5


1 SGT. CASAREZ: Good morning. My name is Robert

2 Casarez -- Staff Sgt. Robert Casarez. I have spent 20

3 years in the U.S. Army. I served with General Franks, 7


4 Corps Headquarters, during the Gulf War. I served two

5 six-month tours in Saudi Arabia.

6 As a result of the service to my country, I now


7 suffer from chemical sensitivity, painful joints, rash,

8 sores, diarrhea, eye sensitivity, memory loss -- memory

9 loss, bone and joint pain, and extreme fatigue and many

10 others. Some of my symptoms started after a SCUD attack


11 that we had in our area.

12 At that time, most of the personnel in my unit

13 broke out with diarrhea and I enquired about it through my

14 chain of command. Actually, we all did. The comment that


15 was given to us was that the reason that we were catching

16 diarrhea was because of the lettuce and tomatoes that we

17 were eating. Our supply source -- food source came from


18 about a block away from where the SCUD hit.

19 Since my return from the Gulf War, trying to

20 get health care for my chemical sensitivity from civilian

21 doctors that I pay myself has not been a problem. Trying


22 to get health care from DOD -- Department of Defense -- or








6


1 the VA is almost impossible. I have been waiting for

2 health care since my return from the Gulf.

3 I have been told on numerous occasions if I


4 will take psych care, I will have all the care that I can

5 get. Care for my diagnosed medical problems -- I can

6 forget that. I will spare you with the details of


7 falsification of my medical records and the nightmare I

8 have gone through during my active duty service for coming

9 forward to try and to get the active duty -- trying to get

10 on the -- correction -- to try to get on the active duty


11 Gulf registry. I can tell you that doesn't work too

12 easily.

13 My Walter Reed stay in 1992 started with the

14 doctors trying to convince me that I was the only person


15 there at the time when there were six other personnel that

16 were kept on the fifth floor. When I persisted, I was

17 asked, Sergeant, do you want a medical discharge? And I


18 said, Excuse me, ma'am -- which I was assigned two

19 doctors, a captain and a major.

20 I said, Excuse me, ma'am. How can you offer a

21 medical discharge when you guys are telling me every day


22 that there is nothing wrong with me?








7


1 Then I was told, Sergeant, if you will stop

2 mentioning that there is a Gulf War problem, you will get

3 better care than what you would saying there is a Gulf War


4 problem.

5 My stay went downhill from there. Two years

6 later after being transferred to Fort Hood, Texas, I was


7 sent to San Antonio for the Persian Gulf Evaluation. The

8 Army doctors there recommended that I be medically

9 discharged.

10 Fort Hood, where I was stationed, would not


11 hear of such thing. They refused to medically discharge

12 me. They mentioned to me that I am getting 50 percent,

13 you know, what more did I want. What I wanted was medical

14 care. I felt the reason was I had been trying to get Fort


15 Hood to give me medical care to myself and six soldiers in

16 my unit and the soldiers there at Fort Hood, which we were

17 all having a very difficult time trying to get this


18 medical care.

19 DR. LANDRIGAN: One minute, Mr. Casarez.

20 SGT. CASAREZ: Okay. The VA sent me to Houston

21 VA. All they ever seemed to want to do there was send out


22 the psychiatry personnel around. I wanted to see medical








8


1 doctors. I needed care for my chemical sensitivity, my

2 heart, liver problems, plus other symptoms.

3 Throughout my stay there, the Houston VA --


4 they did not want to discuss my medical problems. I

5 instead -- I insisted they help me. One of the social

6 workers there mentioned, Sergeant, if you are unhappy


7 here, you can stop at any time. We have had at least 25

8 people stop the program and move on to something -- go

9 back home.

10 DR. LANDRIGAN: Maybe that is a good point to


11 ask the panel if they have any questions of you. Thank

12 you for telling your story.

13 SGT. CASAREZ: Okay, sir. Sir, one thing I

14 would like to mention there at the end is that I have had


15 help from Dr. Rey, Environmental Health Center in Dallas,

16 Dr. McGail, and Dr. Langston. I appreciate their help. I

17 don't think I would be where I am today if it wasn't for


18 their help.

19 Do I have any questions at this time?

20 DR. LANDRIGAN: Thank you very much. Members

21 of the panel?


22 DR. TAYLOR: You mentioned that you do have








9


1 help from an environmental health physician. Are they --

2 and you have been diagnosed with multiple chemical

3 sensitivity?


4 SGT. CASAREZ: Yes, ma'am. By Dr. Rey and also

5 seeing Dr. Claudia Miller at the Houston VA.

6 DR. TAYLOR: So are you sensitive to chemicals?


7 Are there any specific chemicals that you are sensitive to

8 now?

9 SGT. CASAREZ: Yes, ma'am. Any time I smell

10 hairsprays, paint, fingernail polish -- it just starts to


11 tick off the problems within my body. Yes, ma'am.

12 DR. LARSON: Sir, what is your current status?

13 SGT. CASAREZ: Right now, I am at home, ma'am.

14 I am not working or -- I did retire.


15 DR. LARSON: Could you just briefly explain

16 what you meant by falsification of medical records?

17 SGT. CASAREZ: Yes, ma'am. Ma'am, there is


18 a -- things in there that would be -- that would not be

19 mentioned in the records. I will give a -- for instance,

20 at Wilford Hall, there were some things that -- I hate to

21 go into detail here -- that some tests that we were taking


22 and that were not mentioned in our records or some things








10


1 that I felt that was put into our records that should not

2 have been.

3 I will give a for instance for psych at Wilford


4 Hall. Once I seen the psych there, he just went down a

5 little book there and said, Sergeant, have you been

6 diagnosed yet? And I said, No, sir. I haven't.


7 Well, this seems like a good one. Submit a

8 form, he said. So I guess that is my meaning there,

9 ma'am.

10 DR. LARSON: Okay. Thank you.


11 MR. RIOS: Mr. Casarez, I met you at the VA

12 Hospital in Houston. Do you recall?

13 SGT. CASAREZ: Yes, sir.

14 MR. RIOS: How long were you there at the


15 hospital? You were there for observation. How long were

16 you there?

17 SGT. CASAREZ: Two weeks, sir.


18 MR. RIOS: Are you still under their care?

19 SGT. CASAREZ: No, sir. I was sent back with

20 my little written diagnosis and that was it, sir. They

21 did not say that they were going to request for me to come


22 back or not.








11


1 MR. RIOS: Is Dr. Miller still -- are you still

2 under Dr. Miller's care?

3 SGT. CASAREZ: No, sir.


4 MR. RIOS: If I recall -- let me ask you just a

5 general question. When you started reporting your

6 symptoms to DOD and the VA, this started probably several


7 years ago. Is that correct?

8 SGT. CASAREZ: Yes, sir.

9 MR. RIOS: Have you noticed any difference in

10 attitude or in trying to take your symptoms more seriously


11 over the past several years? Has it changed in any way?

12 SGT. CASAREZ: From Walter Reed, yes, sir, it

13 has a little bit. I still say they are -- the biggest

14 comment I always make, sir, is the doctors are always


15 telling me that, Our hands are tied. Until someone

16 releases our hands, then we can give you guys better care.

17 It got better from Walter Reed to Fort Sam and


18 to Wilford Hall. But the thing that lacks is that

19 protocol -- the listing that they give us of things they

20 examine us for, not all of us get examined for the same

21 thing. Just if you happen to complain about it, that is


22 what they are going to look at.








12


1 Same with the VA -- with Houston. If you don't

2 mention chemical sensitivity, you don't get looked at.

3 You may have that problem, but the doctors aren't going to


4 say, Dr. Miller, we need you to come down and check these

5 other two individuals out.

6 I was the only one that brought it up so I was


7 the only one they looked at.

8 MR. RIOS: Okay, Mr. Casarez. Thank you very

9 much.

10 SGT. CASAREZ: Thank you, sir.


11 DR. LANDRIGAN: Now our next witness this

12 morning is Mr. Joey Laske.

13 MR. LASKE: I would first like to thank the

14 committee for allowing me to come in here and speak.


15 VOICE: Can you speak up just a little bit?

16 MR. LASKE: I would like to thank the committee

17 for allowing me to come in here and speak. Also my


18 counselor Sheba Giote who used to be the Desert Storm

19 coordinator in this area for the Persian Gulf exams. If

20 it weren't for her, I wouldn't know this meeting was

21 taking place.


22 I guess I am going to have to begin by giving








13


1 you a summary of my medical history. Before the Persian

2 Gulf, I had 13 doctor's visits and follow-ups due to

3 training injuries and allergies. Since my return from the


4 Persian Gulf, I have had 51 appointments while on active

5 duty. And as of yesterday, I completed my 230th doctor's

6 visit, appointment, or ER visit since April of 1994.


7 After my discharge, which was followed up by a

8 new command that I was moved to after return from the

9 Persian Gulf, they said my symptoms were in my head, that

10 I was bringing this on myself. They kicked me out of the


11 military. I am currently fighting with St. Louis to

12 change my discharge over to medical retirement.

13 Since my return, I have had 32 occurrences of

14 bronchitis, shortness of breath, and bronchial spasms


15 which have led me to the ER. Thank God for San Antonio's

16 VA Hospital, because they know me by name. When I go in

17 there, I get immediate care.


18 After all of these occurrences of bronchitis,

19 the VA doctor suspected tuberculosis. When they tested me

20 for that, they also did an immunity suppression test to

21 test for skin anergy. They did this test three times. I


22 showed no response from my immune system.








14


1 The doctor reading the results told me he had

2 only seen this condition in full-blows AIDS patients. He

3 left the room. He did not return. He has never seen me


4 since. They sent in a social worker and another doctor to

5 get me to sign paperwork in order to test me for HIV.

6 After the eight tests I have gone through for


7 HIV with negative results, I still cannot get that

8 positive statement out of my disability paperwork. After

9 they ruled out the HIV, they tested me for lupus,

10 leukemia, cancer, brain tumors. When they found no


11 explanation, they related it to stress and they said it

12 was in my head.

13 As a result of that statement, I spent two and

14 a half years under psychiatric evaluation. I have had to


15 threaten to go to my congressman to get a vehicle sticker

16 so that I can get on Lackland to get to my appointment at

17 Wilford Hall.


18 One of our biggest problems faced by the

19 Persian Gulf veterans is there is no general health

20 coordinators at our VA Hospitals that can coordinate and

21 review all of our exams and records. From the specialist


22 we have been sent to, there is not a clinic set up to come








15


1 up with a treatment strategy. The veteran ends up seeing

2 specialist after specialist, getting placed on medication

3 after medication, after leading -- often leading to other


4 side effects.

5 I brought with me my medications that I am

6 currently on. After going through all the specialists and


7 after years of trying to get the doctors to listen to us,

8 the veteran still must send his claims to a regional

9 office that you have stipulated as Nashville. Those of us

10 in Texas, ours go to Houston, forwarded to Nashville.


11 I have had claims in since '94 -- since last

12 summer -- and each diagnosis I send in a new claim. The

13 board makes the decision without even seeing the patient.

14 The problem is, we can't support ourselves. I haven't


15 worked since October of 1994, where the employment agency

16 I was working for said, You can either go to your doctor's

17 appointment or you can go to work.


18 That is not a choice. If we can't afford to

19 support ourselves, do you think we can afford to go to

20 Nashville to be seen by the board in yet another

21 appointment?


22 I can't begin to describe the degradation and








16


1 humiliation we have suffered from this disease. We were

2 once motivated and productive individuals but now we are

3 forced to accept drastic changes in lifestyles and


4 activities. I used to be a training NCO for my unit and I

5 ran five miles a day. Now I feel fortunate when I am able

6 to walk by dog without losing my breath.


7 There isn't a day that goes by that I don't

8 wake up, live through the day, and go to bed in pain.

9 This pain has often caused us to be bedridden. I have

10 been diagnosed with chronic fatigue and fibromyalgia. I


11 spend approximately 16 to 18 hours a day sleeping and

12 spend most of my weekend in bed. Where I used to go

13 hiking and bicycling, horseback riding and swimming, I now

14 look forward to going to a movie or lunch with friends.


15 I stayed in San Antonio, not my home of

16 Michigan, because I needed to be here with a major VA

17 facility. Although my family wishes for me to move home,


18 the thought of switching to another VA facility and having

19 to go through this process all over again is too

20 frightening. We are no longer able to support ourselves

21 and are forced to rely upon friends and relatives to


22 support us.








17


1 Although it is not easy for married veterans to

2 make ends meet, I ask you to imagine what it is like for a

3 single veteran. As I said, I haven't worked since October


4 30 of 1994, when they gave me that wonderful option.

5 After losing my job and career, my hobbies and activities,

6 why should we lose our credit? It is humiliating to go to


7 a job interview, get all the way to the medical screening

8 and have them tell you to get your health in order and,

9 Come back and see us.

10 The other problem we face is that there is no


11 diagnosis. Doctors can't agree and our research groups

12 aren't communicating with each other. Worst of all, our

13 government won't even acknowledge the possibilities of

14 troops traveling through chemical areas and they won't


15 discuss the use of unapproved inoculations and

16 pyridostigmine bromide tablets we took that were supposed

17 to protect us from chemical agents.


18 What about the diesel that we lived on that our

19 generals dumped on to keep the dust down? What about the

20 chemical suits that we spent 80 days in with charcoal

21 being absorbed into our bodies? All these effects have


22 ruined our lives. I ask you, as the committee, to get our








18


1 government agencies speaking together.

2 Currently, the Social Security Administration

3 does not recognize the Gulf War Syndrome. They look at


4 your symptoms. Their response to me was, We are treating

5 your symptoms. You can work. They said that I did not

6 qualify for disability benefits under their rules. If I


7 qualify under the VA rules, why don't I qualify under

8 Social Security? Thank you.

9 DR. LANDRIGAN: Thank you very much, Mr. Laske.

10 Questions from the panel?


11 DR. LASHOF: When did your symptoms first

12 start?

13 MR. LASKE: About six months returning from the

14 Gulf. I got sick in the Persian Gulf and they tried to


15 treat it over there. When I got back from the Persian

16 Gulf, I had an intestinal disorder that caused them to do

17 scopes. When they couldn't find anything, they just told


18 me this was something I would have to live with.

19 MR. CASSELLS: What is your current status as

20 well in regards to your military status? Are you

21 medically retired? Were you released from the active


22 support --








19


1 MR. LASKE: I was not allowed to re-enlist.

2 They said that I brought on these symptoms myself so they

3 flagged me so that I could no re-enlist. When they found


4 out I would get benefits upon being kicked out, they

5 cancelled all the paperwork after my window of opportunity

6 closed for re-enlistment.


7 I am currently fighting that decision through

8 St. Louis and have been since April of '94.

9 MR. CASSELLS: So you were released from active

10 service and not allowed to re-enlist?


11 MR. LASKE: I was released.

12 MR. CASSELLS: Thank you.

13 DR. LANDRIGAN: Thank you very much, Mr. Laske.

14 Appreciate your coming here. Now our next speaker is Ms.


15 Kathy Hughes. As Ms. Hughes comes to the podium, could I

16 remind any designated speakers who haven't yet signed up

17 to please do so.


18 MS. HUGHES: I want to thank the committee for

19 being here this morning. My husband is the veteran and I

20 would like for him to speak first and then I would like to

21 address the committee.


22 MR. HUGHES: Thank you very much for your time.








20


1 My name is Harold Hughes. I am retired United States Air

2 Force. I was active duty Air Force a little over 20

3 years. I served in the Persian Gulf from the 30th of


4 October of 1990 until the 4th of May of 1991.

5 Approximately about six months after my return

6 from the Gulf, I first began experiencing my first


7 problems that as time went on, you know, it progressed. I

8 have sore joints. I have night sweats that I suffer from,

9 unexplained fevers, short-term memory loss where I can be

10 in the middle of a conversation and just completely lose


11 track of what I was talking about, mood swings,

12 depression, sleep apnea.

13 I have -- I also have problems with reflux in

14 the middle of the night I used to didn't have, gastric


15 problems, unexplained diarrhea, anxiety attacks. I wanted

16 to make one comment that was one thing that was of concern

17 to me, is in my time in the Gulf, I was put back at times


18 with certain instructions and certain orders that we were

19 given that seemed like it was not exactly very good

20 protocol at the time.

21 We were told to take inoculations that were not


22 really explained very thoroughly to us under the threat of








21


1 disciplinary action. We were told to take pills that were

2 not fully explained to us under the threat of disciplinary

3 action. I was stationed myself at King Fahd International


4 Airport, Saudi Arabia. And within a week after the air

5 war began to -- within a week after the air war began, we

6 were instructed it was no longer necessary for us to wear


7 our chem suits and we should go to the King Fahd option,

8 as they called it, which we -- all we had to do was just

9 wear our mask and our gloves and our hood and completely

10 disregarding wearing chem suits any more. And this was


11 done by general order.

12 And I can't help but feel that maybe if some

13 other precaution was taken -- maybe there are others -- a

14 lot of people out there that wouldn't be as sick as they


15 are. And that is about all I have to say. Thank you.

16 DR. LANDRIGAN: Thank you very much.

17 MS. HUGHES: When my husband returned five


18 years ago, he wasn't the same man. I have known him for

19 21 years. I have always known him to be healthy, had a

20 glow of health, glow of life. I watch him move now. It

21 is like watching an old man.


22 I began documenting his symptoms about four








22


1 years ago and I have filled up four of these with

2 incidents of not only his but hundreds of other people who

3 have called me because I have decided to take a pro-active


4 stand and become involved and find out why were so many

5 people from so many age ranges having the same symptoms

6 when they kept telling him it was his age, at first.


7 I thought, Why? He is not that old. He was

8 only 39 when he retired from the military. And I talked

9 to people in their 20s. They had the same symptoms. I

10 talked to people in their 30s. They had the same


11 symptoms. I talked to people in their 50s and I have even

12 talked to a couple close to 60. They all have the

13 symptoms. They were all there, different times. Some not

14 as long. Some were as long.


15 We have been told tests weren't warranted until

16 recently. Some of the tests have been done after two

17 years of asking for some of them. There was an incident


18 at a military hospital where a doctor made a comment on

19 the Persian Gulf ward that he needed a bed for a patient

20 with a real disease, not like those ones up there.

21 I filed a complaint with the inspector general


22 and that doctor apologized to all of the Persian Gulf








23


1 veterans that were on that ward. He made a public comment

2 he said he was sorry for. He didn't mean it. We wonder

3 as a group of veterans and wives and spouses -- family


4 members who are concerned -- how many other doctors are

5 prejudiced with ideas like this? And then they turn

6 around and say, No, I don't really mean it.


7 I am the daughter of a veteran who died in a VA

8 hospital. I don't want to see my husband die in one. I

9 appreciate you all's help very, very much. Thank you for

10 your time.


11 DR. LANDRIGAN: Thank you, ma'am. If -- Mr.

12 and Mrs. Hughes, if -- I think one or two of the panel

13 have questions for you if you are able to take them.

14 DR. TAYLOR: Mr. Hughes, are you receiving


15 medical treatment currently?

16 MR. HUGHES: Yes, ma'am. I get medical

17 treatment at Wilford Hall Medical Center, at Brooke Army


18 Medical Center, and also at Audie L. Murphy Veterans'

19 Hospital.

20 DR. TAYLOR: And have you been given a

21 diagnosis?


22 MR. HUGHES: No, ma'am. I have never been








24


1 given a definite diagnosis for any of my ailments except

2 the sleep apnea.

3 DR. TAYLOR: Okay.


4 DR. LASHOF: Are you on medication now?

5 MR. HUGHES: Yes, ma'am. I am on several

6 medications from antidepressants to pain relievers for my


7 joint aches and pains.

8 DR. LARSON: Mr. Hughes, what do you think is

9 the cause of your problem?

10 MR. HUGHES: Excuse me?


11 DR. LARSON: What do you think is the cause of

12 your problem specifically. You mentioned some things.

13 DR. TAYLOR: Were there some exposures?

14 MR. HUGHES: Yes, ma'am. I was in an area that


15 was -- there were so many things in the air and around --

16 fires burning, haze in the air from fires burning not only

17 from -- you know, from the area of action but also from


18 fires that we had to burn -- there at the very last, what

19 leftover supplies we had. I was in a detail that burned

20 all kinds of leftover residue in open pits.

21 I also had to make a couple of trips into


22 Kuwait City, you know, myself. And there was all kind of








25


1 things in the air. Soot got all over us and everything.

2 And the shots and the pills. I might add at that anthrax

3 shot was probably the most painful inoculation I have ever


4 taken in my life.

5 MR. RIOS: You mentioned that, on that

6 inoculation, that you were ordered to take it under the


7 threat of disciplinary action. Could you explain that a

8 little bit?

9 MR. HUGHES: Yes, sir. It is very simple. We

10 were given a general order at the time that all personnel


11 were to take this anthrax series. We were even required

12 to sign a statement at the time which, once I signed, I

13 never saw again. And Lord only knows where that it went

14 to.


15 At the time, I was assigned with the 31st Air

16 Transportable Hospital that was out of Homestead Air Force

17 Base, Florida. Whether this -- these statements that we


18 had to sign at the time went back with them or whatever, I

19 do not know since Homestead no longer exists as a base any

20 more.

21 But it was given as a general order as well as


22 taking the P tabs with the threat of disciplinary action








26


1 if we did not adhere to it.

2 MS. HUGHES: I would like to add something

3 about the anthrax shot. He came back in May and he had a


4 lump on his arm from the second anthrax shot that did not

5 go away until August. One morning he was taking a shower.

6 He rubbed a bar of soap over it and it burst inside. And


7 ever since then, he has had joint pains.

8 DR. LANDRIGAN: Thank you again, very much, for

9 coming. The next witness is Ms. Victoria Kilcawley. Yes,

10 ma'am. Please come forward.


11 CAPT. KILCAWLEY: Hello, Committee. I am

12 Captain Victoria Kilcawley, United States Army Nurse

13 Corps. During the Persian Gulf, I was assigned to the

14 251st Army National Guard Hospital stationed in King


15 Kahlad Military City Hafir Abh [phonetic] in Saudi

16 Arabia.

17 During this time we provided care to infants,


18 children, adults, Bedouins -- any type of person that was

19 suffering from direct or indirect battle injuries.

20 Infants with their faces blown off, children with, you

21 know, abdominal injuries -- all kinds of injuries.


22 Redeployment from Saudi Arabia brought with it








27


1 a whole 'nother avenue. I was back in my job about six

2 weeks when I realized that I really felt the need to serve

3 my country. So I enlisted on active duty. In January of


4 1992, I applied and was selected for active duty and my

5 first duty station was El Paso, Texas.

6 El Paso, Texas, is an arid area that reminded


7 me a lot of Saudi Arabia. Being there, I was the head

8 nurse of the trauma intensive care and the surgical

9 intensive care unit, which brought with -- a lot of

10 memories and a sleep disorder. At the same time, I


11 developed subacute thyroiditis for three months in a row

12 on day three of my menstrual cycle.

13 And you are saying, Well, okay. But my husband

14 and I are trying to have a child. So it was of concern to


15 me, why would I be developing these symptoms on day three

16 of my menstrual cycle. I have yet to become pregnant but

17 there is other underlying factors also.


18 I sought information from the infectious

19 disease person at William Beaumont Army Medical Center and

20 was encouraged to contact the Persian Gulf hotline, which

21 I did. The evaluation began on February 14, 1994 and it


22 consisted of the routine blood tests, EKG, chest x-rays








28


1 and everything.

2 But the psychological battery of tests that

3 they gave me proved that -- well, proved or implied,


4 inferred, that I did have a sleep disorder. I was always

5 awake trying to make sure that nothing happened to the

6 patients in the intensive care unit, which was the same


7 method that I used to deal with the situation when I was

8 in Saudi Arabia.

9 I encouraged my nurses in Saudi Arabia to

10 sleep. However, I would never allow myself to sleep. I


11 was always vigilant. Due to this Persian Gulf

12 investigation, I have been diagnosed and treated of a

13 sleep disorder and have, for the past nine months, been

14 able to sleep. And I really would just like to thank the


15 committee for any efforts that you all have made to

16 facilitate the care of the veterans. Thank you.

17 DR. LANDRIGAN: Thank you, Captain. I turn to


18 the committee for any questions.

19 DR. LARSON: Did you have any difficulty

20 getting through the hotline or was it -- how was it for

21 you?


22 CAPT. KILCAWLEY: No, ma'am. I dialed the 1-








29


1 800 number and they said that someone would be calling me

2 back to schedule an appointment. And that did, in fact,

3 happen. Now, I don't know if that was because I was on


4 active duty or not and because I was working in a major

5 medical center. But I had no difficulty.

6 DR. LARSON: How long before they called you


7 back?

8 CAPT. KILCAWLEY: About two weeks.

9 DR. LANDRIGAN: And are you still stationed

10 down in El Paso now?


11 CAPT. KILCAWLEY: I am stationed at Fort Sam

12 Houston now.

13 DR. LANDRIGAN: Okay. Thank you. Okay. Well,

14 thank you very much. Our next witness is Mr. Victor


15 Silvester.

16 MR. SILVESTER: Good morning. My name is

17 Victor Silvester. I am the national president of the


18 Operation Desert Shield-Desert Storm Association but I

19 speak to you today as a father of a Desert Storm veteran.

20 I also speak to you today as a friend of a man who is

21 lying in critical condition who is also a father of a


22 Desert Storm veteran who is also a radiation survivor who








30


1 is also a Vietnam veteran who would give his right arm to

2 be here today and is clinging to life in the Amarillo VA,

3 hoping to stay alive. And his last words at three o'clock


4 this morning was that he was going to hang on to know that

5 we had mentioned his name and that he was with each and

6 every veteran with us here today, in spirit.


7 That young man's name is Coy D. Overstreet. He

8 has fought long and hard for the last five years as --

9 both as a service officer, as a Marine, and as a veteran

10 for the rights and help and the families of Desert Storm.


11 I ask each and every one of you, if you will, somewhere

12 along this morning, take a moment and think of Coy lying

13 in critical condition in that hospital.

14 Mr. Chairman, members of the committee, ladies


15 and gentleman, fellow veterans. Seven long years ago in

16 1989, an authorized representative of the United States

17 government sat on my couch. For over an hour this


18 gentleman told us of the benefits for my son's

19 consideration for joining the nation's all-volunteer armed

20 forces.

21 He told us of the educational benefits. He


22 told us of the training benefits. He told us of the








31


1 medical benefits. He informed us and he assured us that

2 if my son got sick, hurt, or wounded in the service of

3 this country, that his government would take care of him.


4 Based on that presentation and the information

5 contained therein, we signed that contract. I signed it

6 because he was underage and he wanted to serve this


7 country. The authorized representative of the United

8 States government also signed that contract.

9 My son served his time. He fought this

10 government's war. He honored his portion of the contract.


11 The question is, when is the United States government

12 going to honor the responsibility of its portion of the

13 contract? For my son and for all of the Desert Storm

14 veterans whose war continues as we speak, the present Gulf


15 illness situation is not an issue of whether chemical or

16 biological products were used or whether our family

17 members were exposed to those products.


18 It is not an issue of whether there was

19 exposure to depleted uranium, endemic diseases, or

20 investigational drugs. These are moot points of issue.

21 The primary issue is that fact that there was a contract


22 signed between the United States military personnel of








32


1 Operation Desert Shield and Desert Storm and the official

2 representatives of the United States government.

3 A contract with a commitment for the provision


4 of healthcare if there was injury, sickness, or wounds

5 incurred during that service to this nation. As

6 authorized representatives of the United States


7 government, it is your legal responsibility to recommend

8 that the government portion of its own contract be

9 honored.

10 In November 1990, the young men and women in my


11 son's unit knew of the distinct possibility of government

12 commitment to veterans' healthcare being questionable.

13 They knew that there -- more than likely -- would be a

14 course of benefit evasion taken by the VA.


15 Three out of four of these young men and women

16 had family or family friends who fought the Agent Orange

17 war, who had fought the Veterans' Administration war.


18 They did not want a second Agent Orange. Members of the

19 committee, we are now in the third generation of veterans

20 who have been misinformed, been labeled as malingerers,

21 been lied to, and have been deceived by a cold,


22 calculating government bureaucracy.








33


1 Veterans of World War II were subjected to

2 mustard gas experiments, lied to, and denied benefits.

3 Korean War era veterans were subjected to radiation


4 experiments, deceived, and denied benefits. Vietnam

5 veterans still continue the battle of the Agent Orange

6 war. And now the Persian Gulf veterans continue on.


7 I wonder if the 150 soldiers who were placed in

8 isolation with virus infections in the Bosnia theater will

9 become the foundation of the fourth generation. Members

10 of the committee, can you assure the American people that


11 the thousands of Gulf War veterans who are still out

12 serving on active duty in the reserves and National Guard,

13 who are standing in the front lines in defense of

14 democracy and freedom, can withstand the rigors of the


15 next call to arms?

16 Do they have the fortitude to win that call to

17 arms or will your assurances have the same substance as


18 the assurances that the Department of Defense and

19 Veterans' Affairs gave us and gave the American people in

20 January 1991 when they told us that the VA facilities in

21 Dallas and San Antonio had been designated to receive


22 chemical and biological warfare casualties and that the VA








34


1 personnel have been training for five months to handle

2 those casualties.

3 Will your assurance be the same substance as


4 that of the military medical community who call for more

5 research when billions of dollars have been spent

6 researching over the last 25 years -- over $1 billion in


7 1969 alone. Where are the results of that research and

8 when will the taxpayers get their money's worth?

9 The excuse for having to react quickly to the

10 Iraqi threat in Kuwait is no excuse for the operational


11 shortcomings of the Gulf War. Exercises, computer

12 programs, and military strategy profiles on American troop

13 deployment have been conducted by the U.S. military since

14 the 1990s -- correction, the 1970s.


15 The United States government sets the standards

16 of freedom and democracy for the world of the 21st

17 century. I ask you to set the standard of freedom and


18 democracy for the Desert Storm veterans. Honor the

19 contract. Thank you.

20 Mr. Chair, I would like to present you with the

21 Yellow Ribbon Committee's interim report.


22 DR. LANDRIGAN: Thank you. What -- Mr.








35


1 Silvester, what is your son's status now?

2 MR. SILVESTER: My son's status now is that of

3 waiting ten months to get an appointment to -- for a rash.


4 When he went over there, he didn't have the rash so they

5 told him there was nothing wrong with him. I won't tell

6 you where he told them to stick the VA.


7 DR. LANDRIGAN: Is he still on active duty?

8 MR. SILVESTER: No, sir. He is on IRR. He

9 won't go near the VA.

10 DR. TAYLOR: So he isn't receiving medical


11 care --

12 MR. SILVESTER: No, ma'am.

13 DR. TAYLOR: -- from the Veterans'

14 Administration?


15 MR. SILVESTER: He was told there was nothing

16 wrong with him. He sat for eight and a half hours. The

17 doctor saw him for five minutes and told him there was


18 nothing wrong with him. Waited ten months for an

19 appointment for a rash. When he got up to Lubbock to get

20 the rash looked at, there was no rash.

21 Told him there was nothing wrong. Go home.


22 DR. LANDRIGAN: Other questions? Okay.








36


1 MR. SILVESTER: Thank you, sir.

2 DR. LANDRIGAN: Thank you, sir. Our next

3 witness is Ms. Sally Medley.


4 MS. MEDLEY: Good morning. Thank you so much

5 for allowing me to talk here. My name is Sally Medley.

6 My family and I have a vested interest in the Desert Storm


7 troops and their illnesses for our family suffers from the

8 same problems -- the same illness. Yet none of us have

9 ever been even close to the Desert Storm theater.

10 I am a housewife at this point in time. I have


11 had to retire from work. My husband is an employee with

12 the Texas Department of Corrections. Our daughter is a

13 student. Approximately three years ago, our daughter

14 became very ill with the chronic fatigue, the weakness,


15 and neuromuscular disease that left the left side of her

16 body withering and to this day it is still two inches

17 smaller than the right side. We


18 went to a lot of different doctors. Really didn't get any

19 answers. One of the doctors indicated that she had Lou

20 Gehrig's Disease or ALS but no one really knew. We were

21 actually watching her die in front of our eyes and


22 couldn't get any information -- not from lack of trying.








37


1 We decided to start a support group in our area

2 for people with neuromuscular problems -- the same

3 problems that our daughter was experiencing -- because we


4 live about 65 miles north of Houston and the majority of

5 us go to Houston for medical treatment.

6 When our local newspaper ran an article --


7 front-page article stating that we were going to be

8 starting the support group in our area, our phone didn't

9 quit ringing for three or four weeks, night and day.

10 People were calling, crying, We felt like we were the only


11 ones that were going through the same problems you all

12 were going through.

13 Our family and Julie's doctors began to think

14 that possibly there was something environmentally wrong in


15 our area. We asked the Texas Department of Health and the

16 TNRCC, which is the Texas National Resource Department to

17 come in and do some studies.


18 This was done. Basically, their conclusion was

19 this is a cluster of coincidences with 26 cases of Lou

20 Gehrig's in a rural, sparsely-populated area. We are

21 going to have 26 cases of Lou Gehrig's Disease in a small


22 area? I think not. Cluster of coincidences was what they








38


1 came up with.

2 We also had a number of multiple sclerosis,

3 myasthenia gravis, polymalasia rheumatica -- all of the


4 neuromuscular diseases plus all of the other same symptoms

5 the Desert Storm vets are experiencing. Our own support

6 group membership list -- basically, the majority of the


7 people we dealt with were all employees of the Texas

8 Department of Criminal Justice, which is the Texas prison

9 system.

10 Thank God for Jean North. She is Drs. Garth


11 Nicolson and Nancy Nicolson's secretary. She has a home

12 up in that area -- an old homestead in our area. She

13 happened to read one of the articles in the local

14 newspaper stating what our problems were in that area.


15 She took the article back to Houston. Showed it to the

16 Nicolsons.

17 They gave us a call. We went down and talked


18 with them. They suggested possibly we might have a

19 mycoplasma incognitus infection. We put our daughter on

20 the doxycycline because we were getting no results from

21 anything else. We thought, Why not give it a try?


22 This had to have saved her life. Within a few








39


1 weeks, she was better. Within a couple of months, the

2 muscle deterioration had stopped and the majority of the

3 pain had stopped. We -- later we found out that not only


4 Julie but then I started coming down with the symptoms.

5 My husband started coming down with the symptoms.

6 We were all tested and tested positive for the


7 mycoplasma incognitus with the HIV capsule gene in it. We

8 started checking into what was going on. In the 80s, the

9 Texas prison system in Huntsville was very quietly and

10 quickly taken over by retired military employees.


11 The inmates -- also during that time, Dr. James

12 Watson, a Nobel Prize winner for DNA research, and several

13 other doctors were doing research at the Texas prison

14 hospital. We talked to Dr. Watson. He says he was doing


15 research on a flu vaccine. He has stated in a magazine

16 that he was doing DNA research on what causes criminal

17 behavior in the prison system there, so I don't know what


18 the answer is or what type of research he was doing.

19 When the inmates were injected in the forearm,

20 they were told they were given a flu vaccine. When the

21 employees were encouraged to go take this particular shot,


22 they were told it was a TB test. Whatever it was, we








40


1 don't know. We do know that these employees now -- some

2 of them are ex-employees -- are coming up positive to the

3 same problems that we have.


4 Currently -- oh, one other thing. We had a

5 farm manager, a Joel Mueller, who worked for TDC. He fell

6 ill on Labor Day weekend with flu-like symptoms, then


7 every system in his body started shutting down. The

8 gentleman died two weeks later. He was positive with the

9 mycoplasma incognitus with the HIV capsule gene in it.

10 Currently, our family is under Dr. Charles


11 Hinshaw's care. He, too, has diagnosed all three of us

12 with Desert Storm illness. I have a few questions. Where

13 are the patient's rights during all these experiments? Why

14 isn't there a physician outcry? We talked to doctors.


15 They say, Yes. We know something is wrong but we don't

16 know what it is.

17 Why isn't the public more concerned? I have


18 talked to people and they say, Oh, there is nothing to the

19 Desert Storm illness. I read about it in the newspaper.

20 There is nothing to it. Was this premeditated murder or

21 was it just another cluster of coincidences on the


22 prisoners that got out of hand and went into the general








41


1 population? I don't know.

2 How many other experiments are being -- going

3 on like this? How many of other people are being involved


4 in stuff like this? Do the experiments still continue in

5 our area? I don't know. I know the illnesses do. I

6 really just don't have any answers to these. I am looking


7 for them and I would appreciate any help I can get.

8 Thank you very much.

9 DR. LANDRIGAN: Thank you, Ms. Medley. And Ms.

10 Medley, I think there are one or two questions for you.


11 Yes.

12 DR. TAYLOR: You mentioned that none of your

13 family members served in the Gulf.

14 MS. MEDLEY: No.


15 DR. TAYLOR: So you are linking their symptoms

16 that they are experiencing with prisoners?

17 MS. MEDLEY: Experimental -- experiments going


18 on at the Texas prison system, basically in the middle

19 80s. The majority of the people that I deal with -- I

20 have 350 families in our area. We call it the Mystery

21 Illness, for lack of a better diagnosis. This was started


22 way before any of us were ever diagnosed with anything.








42


1 We called it the Mystery Illness.

2 Yes. These people do work for the prison

3 system.


4 DR. TAYLOR: Your husband works for the prison

5 system.

6 MS. MEDLEY: Yes.


7 DR. TAYLOR: But he developed the illness after

8 your daughter did -- or prior to?

9 MS. MEDLEY: Basically. But what I can

10 understand from reading volumes and volumes and volumes on


11 mycoplasma incognitus is this can lay dormant, very much

12 like the HIV virus before it rears its ugly head.

13 Something attacks your immune system, then it becomes

14 activated.


15 DR. TAYLOR: Okay.

16 MS. MEDLEY: Yes.

17 DR. LARSON: Ms. Medley, just two quick


18 questions. How are you now? Are you still under

19 treatment or once it is treated, does it go away?

20 MS. MEDLEY: We have got the muscle

21 deterioration taken care of in Julie and, I think, in my


22 husband and myself. We still have the multiple chemical








43


1 sensitivities. We are having bouts, still, of the chronic

2 fatigue. We are at -- you know, we are in a program to

3 develop our immune system. Our immune system was shot.


4 DR. LARSON: But you don't take the doxycycline

5 any more?

6 MS. MEDLEY: We took -- we put Julie on


7 doxycycline for six months. The first three or four days

8 was just like chemotherapy. But she was so determined

9 that nothing else that we were doing was working that she

10 was going to give it her best shot.


11 She was a 17-year-old high school kid that

12 should have been full of energy and meanness or something.

13 She wasn't. I mean, she was just --

14 DR. LARSON: And the second question. Are you


15 aware of anybody who is looking at the prevalence of this

16 mycoplasma in the general population? In other words, is

17 it found particularly in groups that have symptoms or how


18 prevalent is it in the general population?

19 MS. MEDLEY: According to Dr. Lowe at U.S.

20 Armed Forces Institute of Pathology, when I first started

21 talking with him several years ago -- a couple of years


22 ago -- he said that it would -- the mycoplasma incognitus








44


1 probably would affect 3 to 4 percent of the general

2 population and that it would be -- it could be contagious.

3 DR. LARSON: Thank you.


4 DR. LASHOF: Have you had various test done on

5 the immune system?

6 MS. MEDLEY: Yes, ma'am.


7 DR. LASHOF: And do you know anything about the

8 results of those tests?

9 MS. MEDLEY: Yes, ma'am.

10 DR. LASHOF: Could you tell us something about


11 what tests -- what those results are?

12 MS. MEDLEY: I have copies of it in my

13 briefcase, I believe. Dr. Hinshaw in Wichita, Kansas -- I

14 believe he has spoken before you all at the Kansas City


15 meeting -- is treating us currently for the multiple

16 chemical sensitivities. But yes, the -- he did the liver

17 function test, the different blood tests to find out about


18 the T-cells, the B-cells, and all the other immune.

19 I am not that familiar -- I am now currently

20 studying the immune system but since we are working on

21 that next. Heretofore, it was basically mycoplasma


22 incognitus or some of the muscular diseases, trying to








45


1 find answers. We basically had to find answers. Go to

2 our regular doctors and say, Would you test us for this?

3 Could this possibly be what was wrong?


4 DR. LANDRIGAN: Ms. Medley, if you want to send

5 in any supplementary material along that line, you should

6 feel free to do so.


7 MS. MEDLEY: Thank you, sir.

8 DR. LANDRIGAN: All right. Thank you very

9 much. All right. Our next witness is miss Shannah Clark.

10 Ms. Clark.


11 MS. CLARK: Hello. First, I would like to

12 start out by letting you all know about a meeting that

13 recently took place. First Lady Hillary Rodham Clinton

14 was in Dallas about three weeks ago for the signing of her


15 book, "It Takes a Village."

16 And I was able to introduce her to my daughter

17 and to another child suffering from birth defects. To me,


18 she was very concerned with the children and especially

19 when she learned their fathers were Gulf War veterans.

20 DR. LANDRIGAN: Take your time, ma'am.

21 MS. CLARK: She took some information from us


22 and later she said, in an exclusive interview, that she








46


1 would do all she could to get us some help as well as some

2 answers. And just this past Thursday I had a personal

3 phone call from her office saying that they were willing


4 to help and research this.

5 But today I am here on behalf of my husband

6 Darrell and my daughter Kennedi, both who I believe are


7 suffering because Darrell served our country in the Gulf

8 War. Darrell served with the Army's 18th Airborne

9 Division and participated in the Gulf War from September

10 of '90 through March of '91.


11 Since his return, he has been hospitalized many

12 times with pneumonia and suffers from respiratory

13 problems. He also experiences fatigue and mood swings

14 that cause him to become depressed. And he has never been


15 depressed a day in his life.

16 In the summer of '93, he was tested at Brooke

17 Army Medical Center and tested positive for radiation.


18 And since that time, his military health records and shot

19 records have been mysteriously misplaced. My daughter

20 Kennedi, now three, was diagnosed with congenital

21 hypothyroidism, which is an absence of the thyroid


22 hormone, at the age of two weeks.








47


1 She was hospitalized in a German children's

2 hospital while they tried to regulate her hormone level.

3 It was also during this hospitalization she developed


4 disseminated hemangiomatosis, which are collections of

5 blood vessels that gather to make a benign tumor.

6 Her hemangiomas grew over her nose, her mouth,


7 her scalp, near her eye, around and in her ears, on her

8 lower face, her right arm, her vaginal and rectal area,

9 and most markedly on her right leg. She was also noted to

10 have an enlarged heart with a murmur and she is severely


11 anemic.

12 After being transferred to Wilford Hall Medical

13 Center, she had laser surgery on the hemangiomas on her

14 airway to enable her to breathe. An MRI study shows that


15 there are many other internal hemangiomas as well. So

16 far, she has undergone three lasers on her airway and is

17 currently undergoing laser therapy for the lesions on her


18 face.

19 She has been on a regimen of medications since

20 she was two weeks old and she will continue to do so for

21 the rest of her life. My husband is among thousands of


22 veterans who are suffering from unexplained ailments and








48


1 my daughter is one of the hundreds of children born to

2 veterans of the Gulf suffering from birth defects.

3 Since I have become actively involved in this


4 issue, I have received letters from parents all over the

5 U.S. who also have children with multiple defects and some

6 who have even died. This really concerns me. I am not a


7 doctor or a scientist but I do believe that there is a

8 connection to the exposures of our veterans during the

9 Gulf.

10 At this time, the Association of Birth Defect


11 Children in Florida has a database of hundreds of

12 confirmed cases of children with birth defects born to

13 Gulf War veterans and the numbers are growing rapidly.

14 Public statements by the VA about testing of the families


15 have been made, yet not my family or any others that we

16 have been in contact have been invited to be a part of any

17 study.


18 Many veterans have since gotten out of the

19 military and have had children with problems but I don't

20 understand how you are collecting data on these families

21 and how you are collecting data on the number of children


22 who are not born in military hospitals or whose defects








49


1 were not apparent at birth. I don't believe these points

2 are being taken into consideration.

3 I appreciate being a part of this hearing today


4 but while we are here, time is passing and our veterans

5 and especially our innocent children are suffering. And

6 many families are wary of the risk of having more children


7 or even starting a family at all.

8 We need answers and help today, not tomorrow,

9 and certainly not ten years from now because by then it

10 will be too late. Thanks.


11 DR. LANDRIGAN: Ms. Clark, how old is Kennedi

12 now?

13 MS. CLARK: She is three.

14 DR. LANDRIGAN: And is she on thyroid


15 medication?

16 MS. CLARK: Yes, she is.

17 DR. LANDRIGAN: That is lifelong, I guess.


18 MS. CLARK: Yes. She doesn't have a thyroid

19 gland at all.

20 DR. LANDRIGAN: Her thyroid status -- I am a

21 pediatrician and --


22 MS. CLARK: Her thyroid never developed.








50


1 DR. LANDRIGAN: Right. But it looks like

2 they -- she is adequately medicated. Good.

3 MS. CLARK: Uh-huh.


4 DR. LANDRIGAN: Okay. Other questions?

5 DR. LARSON: Mr. Clark, how are you now?

6 MR. CLARK: How am I? Well, I feel fine other


7 than the mood swings -- excuse me. I feel fine other than

8 the mood swings I will have every once in a while. My

9 short-term memory loss when I am in the middle of talking

10 with somebody, especially in the business I am in -- I am


11 in the insurance business -- when I am talking to somebody

12 and all of a sudden, I will just lose my place in where

13 I -- you know, what I was talking about and have to start

14 completely over again.


15 I have had real problems with my respiratory

16 system and also fatigue and, of course, my wife talked

17 about depression. I just go through these little -- it is


18 a roller coaster. I will feel good for about a month and

19 then the next month, I just -- I will go down and I

20 just -- all I want to do is sit on the couch and not do a

21 thing.


22 That is basically where I am at right now. But








51


1 I am not concerned with myself. I am concerned, not only

2 with Kennedi by all the other hundreds and soon to be

3 thousands of children as we are finding them daily. We


4 are having people write in that weren't in -- people who

5 got out like I did, ETS'd out of the military and had

6 their children in military hospitals and they have these


7 defects.

8 The numbers will start increasing and those are

9 the children that we need to take care of. Okay? I

10 signed on the dotted line and I knew what I was signing


11 the dotted line for. Okay. I knew I would serve my

12 country and I would die for my country but I did not sign

13 her name and I did not sign her name.

14 When it brings those two, you know -- when it


15 affects them, there is something wrong. Okay? If it was

16 just me, I wouldn't be up here bitching right now.

17 DR. LANDRIGAN: Thank you very much. Our next


18 witness is Mr. Ronald Matthews.

19 MR. MATTHEWS: Good morning. My name is Ronald

20 Matthews. I served in the Persian Gulf for the Big Red

21 One with the Fourth Cavalry from January 10, 1991 through


22 March 24. I was a helicopter pilot flying scout missions,








52


1 seek and destroy missions.

2 I was all over the region so if there was

3 anything out there, I am sure I was exposed to it. Upon


4 returning from the Gulf, approximately four or five months

5 later, I started developing problems with diarrhea,

6 constipation, unable to sleep, painful ejaculations,


7 headaches -- but I would say it wasn't headaches but head

8 pressure.

9 I was at Fort Rucker, Alabama, going through a

10 flight change from the OH-58 to the UH-60 Blackhawk


11 transition. I was sent to Korea. Upon my arrival in

12 Korea, that is when the illness really started to take

13 over my body and I was Med-Evac'd from Korea to BAMC

14 medical center here.


15 Once I arrived at BAMC, that is when everything

16 started happening wherein that they was running tests.

17 They was telling me there was nothing wrong with me. It


18 was all in my mind and they decided they wanted to

19 discharge me. Been in the military almost 15 years, given

20 my entire adult young life to the military -- ten and a

21 half years to the United States Marine Corps where I


22 served as a drill instructor, which I think is the highest








53


1 position for a Marine, and an officer candidate

2 instructor.

3 Then coming over to the Army to fly helicopters


4 to live a dream that most people in my situation would

5 never even imagine. But to become ill and to have the

6 country turn its back on you, like has happened to me and


7 so many others, to say there is nothing wrong.

8 I am 34 years old and every day I am in pain.

9 I have sleep apnea where I have to sleep with a machine.

10 My wife -- she had to have a full hysterectomy and the


11 doctor that did the hysterectomy said he never seen

12 anything like this.

13 We go the hospitals. And presently all I do is

14 go to the VA. I have no other medical care and the only


15 thing I am getting from the VA is psychological treatment

16 and they want to give you medications. Other than that,

17 the only thing I have going for me is my family and my


18 strong belief and faith in the Lord.

19 Now there is so many reasons that are being put

20 out here of why this can't be when all we need is one

21 reason why it can be. And to my, I should live a long and


22 prosperous life because the only -- one reason I know is








54


1 because I have a 102-year-old grandmother that still has

2 all her faculties today.

3 So during my hearing when they put me out of


4 the military, my mother say something that is instilled in

5 me when she told them, You know, my son -- he should have

6 died over there in the war instead of being sent home to


7 die slowly.

8 And you try to get this help. You try to talk

9 to the right people. You are thinking you are talking to

10 the right people but they say they are going to do things


11 for you but nothing ever happens. And I am determined to

12 be retired because I earned it. Not only do I deserve it

13 but I earned it.

14 I did not question the facts when they said,


15 You need to take this shot, or, You need to take this

16 pill, or, You need to fly this mission. I was the only

17 pilot in my unit to fly a single-pilot mission -- the only


18 black pilot. So it is not that it is a racial thing but

19 when it came down to choosing somebody to do it, they

20 chose me and I did it.

21 I have nothing. I get $289 a month from the VA


22 plus I go to school. That is it. I am surviving the best








55


1 way I can and I shouldn't have to, nor should any one of

2 these other veterans have to go through this. We can't

3 get -- we don't get the information after we get all these


4 tests.

5 We go through all these tests. I still don't

6 know what is wrong with me. I know I have sleep apnea. I


7 know they say I have fibromyalgia but what is that? They

8 don't really know. It is just muscle pains and joint

9 pains, diarrhea, reflux.

10 You get sick. Instead of being a normal thing


11 of two or three days, it is two or three weeks. Something

12 has to be done. We need justice and I especially want my

13 justice. I want to be retired. I should be retired so I

14 can get the medical benefits and my kids can be taken care


15 of in the future the way they should be because I gave my

16 all for this country and I would do so again if I had the

17 help to do so. Thank you.


18 DR. LANDRIGAN: Mr. Matthews, are you receiving

19 medical care today?

20 MR. MATTHEWS: Like I said, I only go to the VA

21 for psychological evaluations every three months. I


22 finally got an appointment, after three years, to go so








56


1 rheumatology which will be on the 28th of next month. But

2 meanwhile, I have been suffering.

3 DR. LARSON: So would you -- your status is not


4 retired?

5 MR. MATTHEWS: I am out of the military,

6 period. I am not retired. I am on my own. I am just


7 another civilian that served this country. When I went

8 through my hearing, they said, Here, we are going to give

9 you 20 percent disability. Go see the VA.

10 DR. TAYLOR: I had one question about your


11 service in the Gulf. You mentioned that you flew

12 helicopter flights. Were there any specific instances

13 where you noticed specific exposures? Were you exposed to

14 similar areas as others have talked about -- the Gulf


15 fires or --

16 MR. MATTHEWS: Ma'am, I lived approximately six

17 city blocks from the fires for almost two weeks. I flew


18 in that stuff almost every day. We had one mission where

19 we had to seek and destroy enemy vehicles that was not

20 totally destroyed, which we knew was hit with depleted

21 uranium cells after the fact. We was not told to wear


22 chemical gear so we just went out and did what we had to








57


1 do.

2 I still haven't been tested for that type

3 exposure.


4 DR. LANDRIGAN: When you were near those fires,

5 did a lot of black soot get on everything?

6 MR. MATTHEWS: Yes.


7 DR. LANDRIGAN: On your belongings and

8 everything?

9 MR. MATTHEWS: Yes.

10 MR. CASSELLS: Mr. Matthews, did you access the


11 VA system? You say you currently have disability under

12 the VA system. Did you access the VA system through the

13 registry program -- the Gulf War Registry or did you

14 access while you were still on active duty through the


15 CCEP program?

16 What type of evaluation have you had?

17 MR. MATTHEWS: I accessed the VA system right


18 after they gave me my walking papers out of the military,

19 in fact, the next week.

20 MR. CASSELLS: But through the registry

21 system --


22 MR. MATTHEWS: No.








58


1 MR. CASSELLS: -- for Gulf War veterans?

2 MR. MATTHEWS: Not through the registry system,

3 no, sir. But I am registered on that system.


4 MR. CASSELLS: Now?

5 MR. MATTHEWS: Now.

6 DR. LANDRIGAN: Thank you very much, Mr.


7 Matthews. Well, we are scheduled now to take a break. We

8 are running a few minutes ahead so let's take 15 minutes

9 and resume at 5 after the hour, please. Thanks.

10 (Whereupon, a short recess was taken.)


11 DR. LANDRIGAN: Good morning again. Let's

12 resume, please. So we are now prepared to continue to

13 hear testimony from members of the public and our next

14 witness is Dr. lawrence Plumlee. Welcome, Dr. Plumlee.


15 DR. PLUMLEE: Thank you. I am Lawrence

16 Plumlee. I am a physician, formerly assistant professor

17 in the Department of Psychiatry and Behavioral Sciences at


18 the Johns Hopkins School of Medicine and formerly medical

19 science advisor to research offices in the U.S. Public

20 Health Service and the U.S. Environmental Protection

21 Agency.


22 I have put on your places while you were on








59


1 break an outline of the five-minute talk that I am about

2 to give. It is also shown here on the screen. Notice

3 that I have written this paper with several colleagues and


4 the -- let's look at the second slide.

5 The second slide mainly emphasizes that the

6 aggregate of signs and symptoms that together constitute


7 the picture of a disease is what we call a syndrome. In

8 order to describe a syndrome, you have to look at all

9 symptoms of the illness. And it was interesting if you

10 will notice in the second paragraph under, "Reality,"


11 without data on the full aggregate of signs and symptoms

12 being seen, you can't define a syndrome.

13 The Institute of Medicine reported last month

14 that the analyses of symptom data conducted by the


15 Comprehensive Clinical Evaluation Program of the Defense

16 Department lacked the sophistication that the

17 identification of a new syndrome would require. Next


18 slide, please.

19 The next one is about differential diagnosis.

20 To do a differential diagnosis, you look at all of the

21 different diagnoses that could explain all of the symptoms


22 that you have. It is interesting to note that 51 percent








60


1 of the sick patients in the Comprehensive Clinical

2 Evaluation Program still had unexplained symptoms that

3 weren't explained by their diagnoses and they weren't


4 tracking symptoms such as new chemical sensitivities to

5 previously tolerated exposures such as drugs, perfumes,

6 and alcohol; new photosensitivity to sunlight or


7 occasional dark brown to red-colored urine.

8 These disorders all suggest the possibility of

9 one of the acquired porphyrias yet they didn't even screen

10 for lead poisoning, one of the most common toxically


11 acquired porphyrias that could easily account for many of

12 the veteran's musculoskeletal and psychiatric symptoms.

13 Next slide, please.

14 On this table we have just taken the ten most


15 commonly reported symptoms from the CCEP study in the

16 left-hand -- that is in the first column labeled, "Gulf

17 War Syndrome," or "GWS," and we added the three additional


18 symptoms that were common to acquired porphyrias: the

19 waxing and waning of symptoms, the photosensitivity to

20 sunlight, and chemical sensitivity which had been reported

21 anecdotally.


22 And we note that all 13 of these symptoms are








61


1 seen not just in Gulf War Syndrome but in chronic fatigue

2 syndrome, in fibromyalgia syndrome, and in multiple

3 chemical sensitivities. Given these well-documented and


4 compelling similarities, why have the Department of

5 Defense and VA not required that all sick vets with these

6 symptoms be screened for chronic fatigue syndrome, CFS;


7 FMS, fibromyalgia syndrome; or MCS, multiple chemical

8 sensitivities.

9 Why would the DOD and VA never release the data

10 on the prevalence of these syndromes among Gulf War vets?


11 Why has the DOD issued diagnostic guidelines including

12 instruction for chronic fatigue and fibromyalgia syndromes

13 but not for multiple chemical sensitivities?

14 And why did the VA officials specifically


15 instruct local VA doctors not to report either the symptom

16 or the diagnosis of multiple chemical sensitivity? Next

17 slide, please.


18 Therefore, we recommend that the VA and DOD's

19 failure to record and analyze all reported symptoms and

20 their unjustified focus on psychogenic disorders have

21 undermined the accurate characterization and differential


22 diagnosis of Gulf War Syndrome.








62


1 Secondly, the VA and DOD must develop a common

2 working case definition of Gulf War Syndrome and both must

3 use it consistently to screen all veterans who seek


4 diagnosis of Gulf War-related complaints.

5 Three, coding instructions and criteria for

6 multiple chemical sensitivities need to be distributed


7 throughout these agencies.

8 Fourthly, DOD's current optimal questionnaire

9 which was designed for use at the end of the now-

10 discontinued Phase 3 must be incorporated into the larger


11 symptom questionnaire. The DOD, now working on its fourth

12 CCEP report, has still not analyzed the MCS data from the

13 first three or even designated someone to do so. So we

14 believe that these -- the information should be released


15 to the private sector where we can do the analysis.

16 Fifthly, given the broadly overlapping nature

17 of these three civilian syndromes -- chronic fatigue,


18 fibromyalgia, and multiple chemical sensitivities -- any

19 clinical patients or research subjects suspected of

20 meeting the criterion for one of the conditions should be

21 evaluated for all three. The CDC explicitly recognizes


22 that fibromyalgia and multiple chemical sensitivities,








63


1 among others, may be co-existing conditions.

2 And finally, Gulf War veterans with skin,

3 psychiatric or neurological symptoms that are provoked by


4 sensitivity to sunlight or to drugs and chemicals must be

5 screened for disorders of porphyrin metabolism. Given the

6 excessive lead exposures experienced by troops in the


7 Persian Gulf, checking lead levels should be a high

8 priority. Thank you very much.

9 DR. LANDRIGAN: Dr. Plumlee, do you have

10 information you could share with us on potential sources


11 of lead exposure in the Gulf War theater?

12 DR. PLUMLEE: The information I had was that

13 during blackout periods, the troops were often forced to

14 be in tightly closed tents so that no light could be


15 emitted and they were using oil heaters, which -- and in

16 some cases, leaded gasoline was used in these heaters

17 because in Saudi Arabia, there was not ready availability


18 of unleaded varieties.

19 I know that there are other sources of lead

20 exposure.

21 DR. TAYLOR: Of the patients that you have seen


22 or with some of the persons that are included in the








64


1 research, have they seen quite a few patients with lead

2 exposure as well?

3 DR. PLUMLEE: We estimated that this was quite


4 a common occurrence because most of these people were

5 staying in tents and they were trying to keep blackout

6 conditions during much of the time.


7 DR. TAYLOR: So they have been medically tested

8 for lead exposure at the -- one of the centers? Or one of

9 you tested them for lead exposure?

10 DR. PLUMLEE: I don't have those data at my


11 fingertips right now but I would be glad to try to supply

12 it if I can find it.

13 DR. TAYLOR: That would be good.

14 DR. LANDRIGAN: Yes. Please do.


15 DR. LASHOF: Are you currently treating

16 patients with Gulf War Illness?

17 DR. PLUMLEE: Not in a formal way.


18 DR. LASHOF: How do you treat in an informal

19 way, if I may ask? Or could you tell me --

20 DR. PLUMLEE: If asked my --

21 DR. LASHOF: -- if the patients --


22 DR. PLUMLEE: If asked my opinion, I would








65


1 render it but I do not have a caseload of Gulf War

2 veterans.

3 DR. LANDRIGAN: Thanks very much, Larry. Our


4 next witness is Ms. Wendy Wendler. Ms. Wendler?

5 MS. WENDLER: I would like to present a

6 professional perspective on timely remedial action for


7 health purposes. I have a master's degree in business and

8 health management from the University of Dallas. It is

9 regrettable that I feel compelled to appear here as I did

10 before Chief Judge Weinstein in a 1984 Agent Orange


11 fairness hearing.

12 Apparently, DOD and the VA haven't learned

13 enough hard lessons from that conflict as thousands more

14 American families now must repeat them. Presently, I am


15 the volunteer National Public Affairs Coordinator for the

16 Desert Storm Justice Foundation.

17 For the past three years, I have heard a


18 hauntingly familiar litany of concerns that repeat the

19 medical, legal, and organizational quandaries which beset

20 my generation of warriors. The information and referrals

21 from me and other independent advocates are viable not


22 only for the committee's work but also for the public








66


1 health crisis faced by the troops, their families, and the

2 American taxpayers who must redress the mistakes of a

3 dysfunctional military establishment.


4 By April '94, I had prepared a summary list of

5 41 private sector contacts that I thought might help. It

6 now needs updating, of course, to include recent events


7 and international experts at last week's symposium in

8 Dallas, which could have been part of your Texas visit.

9 We have already had calls back from the people that we

10 left Sunday, so we are very pleased that Dr. Brown and


11 John Ford are attending.

12 My main mission is to run off at the mouth as

13 they say in the Ozarks where I went to get better when I

14 became ill after my war-time experience. Yet at this


15 fifth anniversary of the Gulf War, there still is no

16 concerted outreach from north Texas VA facilities or

17 anywhere else, it seems.


18 We continue to ask for a DSGF mailing, for

19 example. We are a bona fide 501-C3 organization, one of

20 the few nationally structured groups set up as a

21 membership and we just don't seem to get anywhere. I


22 think they have 1,200 Gulf War vets registered here in San








67


1 Antonio at the VA, the Public Information office told me.

2

3 We have 1,000 in Oklahoma City Ms. Whitcomb


4 checked on. They say they have 500 in Dallas. We can't

5 find them. They can't find us. We are dependent on the

6 media and they do a great job helping out but we need some


7 more help from you all.

8 I do try in small ways to educate the troops

9 about what I call environmental fitness, a self-managed

10 recourse for their illness. I also aim to help illuminate


11 factual research data for government and private sector

12 decision-makers including you, hopefully.

13 Actually, we are all here to remove your

14 plausible deniability and that of President Clinton. From


15 last August onward, he and his committee cannot say that

16 you didn't know about this any more, that you hadn't

17 realized about thus-and-so.


18 I hereby inform you that your on-the-job

19 training is ending and a renewed sense of urgency is

20 required. In this election year, every commander-in-chief

21 candidate must face the vets who attend your meetings and


22 the rest of the 945,000 troops from the Gulf arena who








68


1 cannot, besides their Gulf coalition compatriots abroad.

2 There are numerous tips I would suggest to

3 genuinely concerned power brokers. Basically, my message


4 is business-like as I urge you and vet families to utilize

5 as much as pragmatically possible the current coalitions,

6 organizations, programs, procedures, processes and systems


7 which might achieve our mutual goal speedily and cost

8 effectively.

9 There are already existing helps. Spare us

10 reinvention of the wheel, especially broken ones. For


11 example, it seems pointless to argue about whether a

12 mugger hits you with a baseball bat or a two by four while

13 you are quickly trying to stop the bleeding.

14 Essentially, I am a mouthpiece, not a doctor or


15 a lawyer. So here is my free advice for a dozen points

16 that I cannot make strongly enough.

17 Number One. This is not a drill. The infamous


18 Pearl Harbor quote says it best. These youngsters and

19 double-whammied Agent Orange aged old-timers are not

20 kidding. There is no rationale for them to be ridiculed

21 as, "sick call types," when their lives in the real world


22 would be so much better than any disability pittance or








69


1 government handouts.

2 If the DOD and VA Gulf registry alone were

3 available publicly on a monthly basis, it likely would


4 help refute cover-up defamation of what the Pentagon once

5 boasted was the most educated, finest trained, and best

6 equipped fighting force ever assembled in the history of


7 this planet. Yet now they are blamed for

8 these ills as if combat-hardened troops are just a bunch

9 of dingbats. Mostly -- excuse me. Many of the sickly

10 troops who returned from the Gulf War five years ago have


11 left the service. Among them, more than half a million

12 who have been thrown into the VA pit or dumped onto

13 private and community healthcare systems at even more

14 futile cost to other American families.


15 Outside of Pentagon parameters and seemingly

16 phony readiness statistics, by the VA's own count, more

17 than 3,000 formerly robust troops have sickened and died


18 likely unable to regain their immune equilibrium. The

19 active duty or reserve personnel who remain under DOD

20 auspices either escape these bizarre health troubles in

21 the first place or have been able, somehow, to continue


22 holding their jobs. Perhaps we ought to study








70


1 them. Figure out why they were spared. Discover what has

2 helped them cope better with such health challenges. I

3 hope you have a plan to assess ongoing challenges while


4 protecting the identity of those who are prey to ruthless

5 DOD and VA employment reprisals that we continue to hear

6 about behind the scenes.


7 We believe that, at DSJF, mandatory

8 registration would be helpful and we would like to call

9 for that -- perhaps an executive order or something. When

10 you make them self-select out to say they have problems, I


11 think we are asking for more problems.

12 How can the committee tackle this job without a

13 viable buddy count? Once the dread words, "mortality

14 studies," were uttered last August. I have a box of


15 federal and state Agent Orange paperwork puzzles which

16 didn't resolve similar biochemistry issues while fattening

17 the funding of career-minded researchers.


18 I am very eager to hear from Dr. Claudia Miller

19 today. I wonder why apparently toxic chemicals are still

20 being used to clean Houston Veterans' Administration Gulf

21 ward where our veterans also are threatened with interns'


22 perfumes and other hazards which the good doctor








71


1 supposedly is recommending they avoid.

2 While we listen to her version, let's see if

3 she speaks with her, "hands tied." That is the excuse I


4 have heard for negative reactions some patients are

5 suffering in Houston during her diagnostic testing. We

6 are glad she is there but if she has no way of dealing


7 with it, we would like to help. I wonder if that skews

8 the statistics of any of her studies and publications.

9 Number Two. Who done it?

10 DR. LANDRIGAN: Ms. Wendler, one more minute,


11 please.

12 MS. WENDLER: Thank you.

13 DR. LANDRIGAN: You may have another minute

14 but --


15 MS. WENDLER: Oh, all right. I would like to

16 point out that we have civilian experts who say that it is

17 catching. I would like to report to you in one of my


18 suggestions to get the lead out to relieve levels of

19 toxicity, whatever they are, that Mary Rhodes [phonetic],

20 who testified before you earlier, has been granted a fee

21 basis VA authorization to receive chelation treatment from


22 a civilian expert.








72


1 I am also questioning -- asking the same

2 question a congressional liaison asked me last August,

3 Where are their leaders?


4 We are concerned that none of the generals that

5 we all counted as heros have not come to the troops'

6 assistance. I would mention to you that my former


7 employee, the American National Red Cross, received $13.5

8 million from the Pentagon just after the war to help

9 resettle the troops and handle their problems.

10 It was couched in such terms that they returned


11 the money -- most of it -- to the Pentagon because it had

12 a mental health component requirement to be utilized. And

13 when I talked to the local Red Cross organizations, they

14 would very much like to help and look into that funding


15 again.

16 I would also like to read one thing that

17 General Schwartzkopf describes as how he recovered from


18 exhausting southeast Asian duty and postwar depression

19 after Vietnam by taking, "massive amounts of vitamins."

20 Some Gulf War vets continue to report improving their

21 energy levels, mental acuity, disposition, and work


22 capacity when they faithfully take specific extra








73


1 ingredients besides well-balanced meals and multiple

2 supplements.

3 I would really like to help you all look into


4 that and I have several referrals who might do so. I am

5 particularly concerned that the VA beef up their stop

6 smoking program. We have many veterans who want to do


7 that. They can't get in the program. It is almost like a

8 hoax. They don't -- when they get the patches, they take

9 them away from them. And we really do -- that is one of

10 my personal things that I believe might help Gulf


11 veterans.

12 The real Gulf War illnesses are a national

13 disaster and I believe President Clinton might call on

14 FEMA, which has 1,400 caseworkers available as I


15 understand it in Denton, Texas, north of me, to handle

16 what I understand in February of '94 was a one million

17 case backlog at the VA. And I certainly hope that has


18 been taken care of.

19 I would very much like to urge the president to

20 stay involved. Although he did not wear a military

21 uniform in his own wartime, as former Gulf War Defense


22 Cheney did not, he is now at the pinnacle of defense








74


1 superpower in the nation's command structure and I know he

2 will not turn away from his troops.

3 I pray for him and you in this difficult duty.


4 DR. LANDRIGAN: Thank you very much. Are there

5 questions for Ms. Wender?

6 DR. LARSON: Ms. Wendler, thank you for your


7 testimony. It would be helpful if we have -- had a

8 written copy because I was trying to write down your

9 recommendations and I wanted to clarify what some of the

10 things you are recommending or suggesting. And maybe in


11 addition to these clarifications you could send us your

12 testimony in --

13 MS. WENDLER: Yes. I have a written --

14 DR. LARSON: Let me just clarify now. One of


15 the things that you are suggesting is that the DOD and the

16 VA registry data be made available monthly?

17 MS. WENDLER: Yes. We have been asking for it


18 for several years.

19 DR. LARSON: Okay. And in what form would you

20 recommend that -- like, in a newsletter or what would

21 you --


22 MS. WENDLER: Well, I understand they already








75


1 do it. That is what -- you know, I am sort of the public

2 information person for DSJF and when I call, they have

3 it -- the Dallas public affairs woman says, Oh, I get that


4 every month because I was doing it for this, you know, for

5 our meeting in Dallas, doing a news release. Wanting to

6 sort of brag on them, I guess you would say.


7 DR. LARSON: Okay. And you said that you had

8 been asking for information about the vets and weren't

9 able to get it although it was part of the Freedom of

10 Information Act?


11 MS. WENDLER: Well, we are just trying to say

12 that we are here. That there are things the private

13 sector has always historically done. My grandmother

14 helped found the first support group of Rainbow


15 Division -- in World War I.

16 DR. LARSON: But you are having difficulty

17 getting the information?


18 MS. WENDLER: And it is like, you know, don't

19 ask, don't tell. I mean, nobody is going to tell you how

20 many there are. You might want to meet one of them. And

21 I have to, you know, give the VA credit in Dallas and it


22 is part of the one I know the best, in that they had a








76


1 meeting of everyone that is on the registry, I think, in

2 September of '93. And that is how I got some of the names

3 that I still work with.


4 But I mean, it has just become a personal

5 friendship thing now and I -- we are doing the -- for $10

6 a month --


7 DR. LARSON: Sure.

8 MS. WENDLER: -- DSJF hotline --

9 DR. LARSON: I just think it is helpful to get

10 the recommendations clear so that we can act on them or so


11 that we can understand --

12 MS. WENDLER: Let me make one point about the

13 registry. I have an older form but they have specific

14 categories of gender, types of ailments. It seems to me


15 that if you are going to put that information in, they

16 could just make the report that matches the form.

17 DR. LARSON: Okay.


18 MS. WENDLER: It is already public knowledge.

19 DR. LARSON: Okay. Another thing I think you

20 recommended was that there be a mandatory registry for

21 Desert Storm participants.


22 MS. WENDLER: Yes. We were discussing it at a








77


1 board meeting at DSJF before Christmas and it was just

2 like a little light. Because we continue to hear that

3 people are literally afraid for their jobs and their


4 families to say, Gee, I am failing my third PT test and

5 then they are going to kick me out I --

6 DR. LARSON: And your --


7 MS. WENDLER: -- can't fake it any more.

8 DR. LARSON: Your sense is that if it were

9 mandatory, it would take the pressure off those who are

10 volunteering.


11 MS. WENDLER: Yes. It just sort of flips it.

12 And it says, Why not?

13 DR. LARSON: Yes. Okay. And then another

14 recommendation was that the $13.5 million that had been


15 allocated to the Red Cross for resettlement or

16 readjustment or whatever --

17 MS. WENDLER: Yes. I --


18 DR. LARSON: -- be re-allocated --

19 MS. WENDLER: -- have the handout outside. I

20 brought the material with me.

21 DR. LARSON: Okay. Great.


22 MS. WENDLER: Most of it that I mentioned.








78


1 DR. LARSON: Then beefing up the smoking

2 program which is --

3 MS. WENDLER: Yes. That is a pet peeve of mine


4 but --

5 DR. LARSON: -- for a lot of good reasons --

6 MS. WENDLER: Well, it just helps, I think.


7 DR. LARSON: Yes.

8 MS. WENDLER: And they really are trying. When

9 they want to and then they can't, it just -- sort of

10 weird.


11 DR. LARSON: Then my last question is, you said

12 that you are aware of 3,000 vets who have been sick or

13 died out of the 900,000 that served. And if you have

14 information on that or --


15 MS. WENDLER: Oh, that is the VA's numbers.

16 Terry Jennison [phonetic], for Veterans Day, he gave me

17 the number of 2,900. And I -- Mr. Silvester and all of us


18 received bulletins. I took the lowest, most conservative.

19 DR. LARSON: Sure.

20 MS. WENDLER: They told me, I didn't make it

21 up, number. I mean, we believe there are more because of


22 just the way the reporting has probably been.








79


1 DR. LARSON: Right. Okay.

2 MS. WENDLER: But I mean, that is -- you can

3 take that one to the bank.


4 DR. LARSON: So thank you. I just wanted to

5 ask you to get those in written form so we are clear.

6 MS. WENDLER: Yes. And more than you ever


7 wanted to know, probably. I do have some people that

8 wanted to submit materials had we been able to do this in

9 Dallas and I will be packaging that up for you as well.

10 DR. LANDRIGAN: One more.


11 DR. LASHOF: One more question. Can I ask you

12 further about this mandatory. Would veterans really want

13 to be mandated to come in for an examination? I don't

14 understand how one can mandate one's former -- civilians.


15 MS. WENDLER: Well, certainly there is the DOD

16 registry that I understood they just called if they wanted

17 to.


18 DR. LASHOF: Well, those who are on active

19 duty, yes, can be ordered.

20 MS. WENDLER: Well, they are the ones --

21 DR. LASHOF: But once one is discharged and is


22 a veteran, to mandate a veteran come for an examination








80


1 seems to me somewhat inappropriate.

2 MS. WENDLER: Well, I am saying maybe -- I am

3 the English major. Maybe the language of it is that we


4 would like all of them to come, you know. It is a buddy

5 count. It is information on it. You heard Shannah Clark

6 tell you -- and I happened -- she used to live in my


7 area -- that she just -- people were being flooded.

8 Someone called me from near Washington, D.C.

9 yesterday out of 18 people to have birth defects. It is a

10 constructive thing, I think. And this is not just my idea


11 alone. But it dawned on us that how could we take the

12 onus off of it? How could we remove the stigma?

13 They are telling people not to go. It is sort

14 of like, you know, I mean, when they are in the Army, you


15 can tell them what to do. So if you said, You all go fill

16 out this form.

17 They fill out a million forms. It is kind of


18 like a secret ballot or something. I assume it would be

19 private, to a point. But there is something wrong with

20 what is happening and you all were -- none of us are

21 getting accurate information when I hear people tell me


22 that they -- understand those people have been ordered not








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1 to go get information, not to make it known.

2 I think it has something to do with their

3 readiness statistics and their PT.


4 DR. LASHOF: Well, we can look into it. But I

5 mean, we have been assured that people are told that they

6 can avail themselves of it and that there are no stigma


7 and that the announcements all tell you to call whether

8 you are ill or not. And we will look into whether --

9 MS. WENDLER: Well, I can put you in touch --

10 DR. LASHOF: -- other messages are going on --


11

12 MS. WENDLER: I can only put you in touch with

13 the people who told me this. I am the mouthpiece today

14 but it was obvious enough that we discussed it at board


15 meetings.

16 DR. LANDRIGAN: Well, anything you can provide

17 us will be to the good.


18 MS. WENDLER: That is great. We really do

19 appreciate you all. You have given us a forum.

20 DR. LANDRIGAN: Next, we have Mr. Antonio

21 Melchor. Mr. Melchor.


22 MR. MELCHOR: My name is Antonio M. Melchor. I








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1 served in the Persian Gulf aboard the USS Midway CV-41 as

2 a parachute rigger, second class. I was on board from

3 January to April. I am president of the Persian Gulf


4 Veterans of America.

5 How short a memory the news media has and we

6 all have. Don't you remember this event when Saddam


7 Hussein said, I have infected your troops for -- not only

8 your troops but for five generations past -- or, future --

9 with chemicals that are going to affect your families for

10 five generations in the future.


11 Nobody remembers that? He wasn't kidding. The

12 evidence is here -- the first generation, maybe the

13 second. I started getting sick with a tingling, numbness,

14 and burning sensation on my body and throat when we were


15 wiping up the wings of the E-2 Hawkeye airplanes that I

16 work with.

17 I remember thinking to myself, They have not


18 reported the use of chem war so why was I getting sick

19 with chemical intoxication? Later, we suffered more

20 chemical ingestion when our drinking, cooking, washing,

21 and bathing water became heavily contaminated with some


22 sort of chemical that burned our mouth, throat, esophagus,








83


1 and stomach when we -- when we took our showers, we

2 smelled of petrochemicals as well as the freshly-washed

3 clothes we put on.


4 The food tasted of kerosene. We were in a 100

5 percent contaminated environment. I became very sick with

6 digestive problems that same day that the contamination


7 came aboard ship on our drinking water. Later, I learned

8 from a chief petty officer in charge of distilling the

9 ship's water from the sea that we had indeed ingested

10 heavily contaminated water through our distilling plants.


11 The Navy ships' distilling plants are not

12 designed for modern combat situations and cannot filter

13 out chemicals. I was told by one of the undersecretaries

14 of the navy that it would cost too much to upgrade. In


15 other words, the iron ships will go on. The men can be

16 replaced.

17 Consequently, I now suffer, like many other


18 veterans and family members, from chronic fatigue

19 accompanied by acute depression, digestive problems. I

20 can no longer eat fish, which I used to eat to keep

21 healthy, or ethnic foods without getting sick.


22 I suffer from reflux and am constantly choking








84


1 on my digestive juices. I have to sleep with my upper

2 torso elevated or I would choke in my sleep. I suffer

3 from extreme joint and muscle pain followed by


4 disabilitating cramps that at times I cannot even get out

5 of bed because of this and basic other problems affecting

6 my body.


7 Also my memory blocks that control my normal

8 body functions are gone. In other words, if I were a

9 computer, all my command functions would be gone and I

10 would not be able to operate without a reboot. This is


11 what I have to do. This is what I have to do some

12 mornings.

13 I have to go through an extreme effort to

14 reboot myself so I can function. I am in a constant state


15 of agitation followed by uncontrollable rages, usually

16 against my family members. At home, life has become a

17 living hell due to my intolerance and unable to take the


18 everyday pressure.

19 And I am not alone in this. All the members

20 that have gone through Desert Storm have something like

21 this. But when we got to the VA, we are told that we are


22 isolated cases, that we are just the ones suffering from








85


1 this. And whatever we are suffering, it is in the general

2 population.

3 Well, that might be so, gentlemen. It might be


4 in the general population but not all these symptoms are

5 in one group, like we are suffering. Also, we suffer from

6 memory losses, like these other gentlemen have said.


7 Sometimes in the middle of a sentence, everything blots

8 out and we have to -- sometimes get our memory back,

9 sometimes we don't.

10 This is something we have to face every day.


11 Some of us cannot work. I am fortunate that I have a job

12 with -- sometimes I am suffering, I can stay and have

13 other people do my job because I am a supervisor. If it

14 wasn't for -- if I wasn't a supervisor, I wouldn't be able


15 to hold a job because I am in constant pain.

16 I am suffering from terrible memory losses. I

17 suffer from depression. I have no sense, sometimes, of


18 direction. I become disoriented. When I am out driving

19 sometimes, I don't even know where I am at. And these are

20 some of the things that we all suffer, some of us in a

21 more acute stage. And it is not getting better,


22 gentlemen. It is getting worse.








86


1 And then when we go to the VA, we are met --

2 for example, I went to this doctor. And he told me, I am

3 an expert on chemical warfare now. I have been taken by


4 the VA administration and have been shown that there was

5 no chemical used in the Persian Gulf. He said, I am an

6 expert. And I said, You are an expert? Then why are we


7 suffering all this? This is -- I used to be a chemical

8 instructor for the Air Force so I know when I see

9 chemicals being -- effect on people. And I told him, You

10 are looking at the proof right here. Every day you are


11 looking at the proof that there was chemicals used over

12 there. If you are blinded by that, then you are blinded

13 because you want to be blinded by that or you have been

14 told to be blinded by that.


15 Because you see us every day come in here and

16 you are telling us to show you the proof. We are the

17 living and dying proof. Thank you, gentlemen.


18 DR. LANDRIGAN: Mr. Melchor, if you are able to

19 take questions, we have a couple. If I understand

20 correctly, you were off the coast on one of the Navy

21 carriers. Right?


22 MR. MELCHOR: Right.








87


1 DR. LANDRIGAN: And your job was to use various

2 solvents to clean the planes when they would return from

3 missions?


4 MR. MELCHOR: I was sent aboard as a parachute

5 rigger though I was not an official parachute rigger. I

6 think I was sent aboard because I was a chemical warfare


7 instructor for the Air Force at one time. And when we --

8 when I first started knowing there was something wrong was

9 when we would decontaminate the wings of the airplanes.

10 The airplanes I was operating with were -- they


11 were in control of the battlefield. They were directing

12 all the flights in there, the bombings and the strafings

13 and everything that was going on in the battlefield. And

14 when they came back, we had to wipe off the wings.


15 And when we started, that is when I started

16 getting sick and I noticed the burning sensation on my

17 body -- the tingling sensation and the dizziness. That


18 right there told me there was something chemical.

19 DR. LANDRIGAN: What were you using? Do you

20 know the name of the solvent or the mix that you were

21 using to wipe down the aircraft?


22 MR. MELCHOR: No. I don't recall right now








88


1 though I know it has been brought up as a smokescreen, you

2 know, What were you using?

3 DR. LANDRIGAN: No. It is not a smokescreen


4 but it is just part of what you were exposed to I am

5 trying to get at.

6 MR. MELCHOR: Right.


7 DR. LANDRIGAN: And then when you -- what kind

8 of material --

9 MR. MELCHOR: Well, that would only last maybe

10 an hour or two, not a lifetime.


11 DR. LANDRIGAN: Okay. What kind of material

12 came off the skin of the aircraft when you wiped them

13 down?

14 MR. MELCHOR: What kind of material?


15 DR. LANDRIGAN: Did --

16 MR. MELCHOR: It was like soot or --

17 DR. LANDRIGAN: Was there stuff on there --


18 MR. MELCHOR: Yes.

19 DR. TAYLOR: I just want to ask a follow-up to

20 what has been asked by Dr. Landrigan. Were you wearing

21 any protective equipment or clothing in working with


22 solvents?








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1 MR. MELCHOR: Not --

2 DR. TAYLOR: Gloves or any kind of respirator

3 at all?


4 MR. MELCHOR: No.

5 DR. TAYLOR: That wasn't supplied?

6 MR. MELCHOR: No. It was a spray can. We


7 sprayed it on a rag and wiped it off, is what it was.

8 DR. TAYLOR: So it was a spray can of some

9 kind.

10 MR. MELCHOR: It was not a -- like a, you know,


11 a massive amount of solvents that we were using.

12 DR. TAYLOR: Okay. Are you currently under any

13 kind of treatment, then, for your symptoms now?

14 MR. MELCHOR: I have gone to the VA but because


15 I have not been diagnosed officially, I have to pay for

16 everything. Right now I have got a -- every month I get a

17 billing from the VA that I owe them some money and plus


18 the attitude of the VA -- I don't go down there no more.

19 And it is not only me but it is thousands of us

20 don't go there because of the attitude that we are facing.

21 MR. CASSELLS: I just want to clarify that last


22 statement. Are you registered through the VA Gulf War








90


1 Registry?

2 MR. MELCHOR: I am registered to the Persian

3 Gulf Veterans' and -- Registry -- and the DOD.


4 MR. CASSELLS: Okay. And you have been through

5 the VA evaluation system?

6 MR. MELCHOR: Right.


7 MR. CASSELLS: Okay. And you have been

8 receiving bills?

9 MR. MELCHOR: Right.

10 MR. CASSELLS: From the VA?


11 MR. MELCHOR: Right.

12 MR. CASSELLS: Have you been paying those

13 bills?

14 MR. MELCHOR: No.


15 MR. CASSELLS: My understanding is that those

16 bills are, in fact, in error.

17 MR. MELCHOR: Well, in fact, I am paying them.


18 Let me clarify that. I am paying them.

19 MR. CASSELLS: You should not be receiving

20 them. We will look into that.

21 MAJOR KNOX: Joe, my understanding was if you


22 were not given a diagnosis or a VA claim pension that you








91


1 do have to pay for those after your initial Phase I

2 evaluation. Is that wrong?

3 MR. CASSELLS: I think we need to clarify that.


4 That is counter to what we have been told at a couple of

5 our site visits.

6 MR. MELCHOR: So, you know, my bills are minor


7 compared to some of those other veterans who have

8 thousands of dollars of bills accumulating. So what

9 initiative do they have to go back? And what is going to

10 happen -- and it has already happened -- a lot of those


11 people die even before, you know, they get diagnosed or

12 even before they get on the registry because they are

13 kicked out of the service.

14 And when you kick them out of the service, you


15 cut off their funding. You cut off their -- what is going

16 to happen? You really cut off their living funds. You

17 send them out to die. You put them on the -- right on


18 Schindler's List.

19 DR. LANDRIGAN: Thank you very much, Mr.

20 Melchor. Next is Staff Sgt. Paul Lyons. Mr. Lyons?

21 SGT. LYONS: I have got some handouts for you


22 all. One second, please. We will see how far these will








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1 go and then I will hand out the rest of these others here

2 in a minute.

3 I would like to thank you all for the


4 opportunity to be here. I am active duty. As an active

5 duty soldier, I am president of a Persian Gulf information

6 network. I run a support group for Persian Gulf War


7 veterans in Tennessee. I am stationed at Fort Campbell,

8 Kentucky.

9 Being active duty, I am allowed to speak on

10 this matter due to a memorandum that was put out by the


11 Secretary of Defense dated May of 1994 which stated that

12 as a veteran of Desert Storm, that I should not feel

13 constrained in any way from discussing these issues of

14 chemical or biological exposures, which is in the handout.


15 I would also like to point out that I am

16 speaking personally for myself and as president of the

17 Persian Gulf Information Network and in no way should my


18 testimony be misconstrued to represent official policy of

19 the United States Army or DOD.

20 I come before this committee with official

21 government documentation showing that chemical agent


22 detections were, in fact, confirmed and noted by our








93


1 forces During Operation Desert Shield-Desert Storm. The

2 second document that I wish to present to this committee,

3 which is in the handout, is the daily staff journal or


4 duty officer's log.

5 What it is, it is an Army regulation. It tells

6 you how to fill out the duty officer's journal logs that


7 were used over in Desert Shield-Desert Storm to record

8 nuclear, chemical, and biological events. Well, let's

9 just say chemical-biological.

10 I obtained these logs using the Freedom of


11 Information Act from the 101st Airborne Division or

12 Assault where I am stationed. And I didn't have a chance

13 to exhibit -- mark everything as an exhibit but on the

14 first particular one, it states that the 8th Battalion


15 101st called up to the Airborne -- 101st Airborne

16 Divisions and they stated that the sirens were going off

17 in the 8th Battalion 101st area.


18 And if you will notice on what they call

19 DA-1594s, you will see that -- and I quote this -- it

20 says, "Verified by air." So when you verify a chemical

21 substance by air, that is probably, short of liquid


22 contamination by chemicals -- that is about the most








94


1 surest means you can have to confirm nerve agent.

2 Exhibit E is an intelligence report dated 22

3 January 1991 that again confirms the French detected nerve


4 agent GAGV, a blister agent in, "sub-lethal quantities."

5 The report goes on to say, "The French assessed the

6 incident to be the result of bombing of chemical agent


7 storage in Al Salman. And the source of the information

8 at the bottom of this information report which was a spot

9 intelligence report is by the French chemical NCO, the

10 noncommissioned officer who deals with that.


11 Exhibit F is an operations order from the

12 commander of the 18th Airborne Corps dated 21 January

13 1991. Page 2, Item 2 of this order states, "Corps deep

14 strike operation priorities continue to be enemy chemical


15 delivery systems."

16 Well, ladies and gentlemen of this committee,

17 if there were no chemicals over there, why would our


18 priorities be to attach enemy chemical delivery systems?

19 Exhibit I of this report -- because I -- due to

20 time constraints, I am going to just dance around them.

21 Exhibit I of this report dated 25 January 1991, Item 44,


22 which states, "From Corps G3 the 3rd Armored Cavalry








95


1 Regiment reports a one-round air burst with a yellow cloud

2 at 500 meters from the TOCP." TOCP is an acronym for

3 Tactical Operations Command Post. So in effect, according


4 to Army doctrine, if you have an air burst with a yellow

5 cloud, more than likely that is mustard agent.

6 Exhibit K dated 28 January 1991 states that


7 from G2 -- this was an intelligence report that was

8 intercepted and it plainly states in it that Saddam

9 Hussein gave authority to use chemical weapons to brigade

10 level. So once again we have to ask ourselves, if Saddam


11 Hussein did not possess chemical weapons, what are we

12 doing receiving an intelligence report stating that he

13 gave the authority to use those weapons down to brigade

14 level?


15 There is one of these other exhibits in here

16 where 1st Battalion of the 327th detected nerve agent

17 under the supervision of the chemical officer who had been


18 through chemical training school. He called in an ANBC1

19 report to 101st Airborne Division with a verified chemical

20 detection. I know my time is running out

21 so I want to hand out to the committee here something that


22 was mailed to me because I have a P.O. box running this








96


1 nonprofit organization for Persian Gulf War vets out of

2 Fort Campbell, Kentucky.

3 We meet the first Wednesday of every month at


4 the Noncommissioned Officers' Association and we really

5 appreciate them for that. But if you will notice on this

6 memorandum, it says, "Subject: Identification and


7 processing of sensitive operational records." And you can

8 see the date says, "3 November 1995," so this is very

9 recent.

10 And it goes on to state that the, "Department's


11 Secretary of Defense in ASD/HA have expressed concern

12 about potential sensitive reports or documents on Gulflink

13 that have directed -- declassifies, identifies such

14 documents and forward them to the investigation team prior


15 to release on Gulflink," which for those of you who are

16 not aware of what Gulflink is, it is a Worldwide Web site

17 on the Internet.


18 "The purpose of this procedure is not to stop

19 any declassified or unclassified documents from going on

20 Gulflink but to allow the investigation team time to begin

21 preparation of a response on particular" -- and I quote --


22 "bombshell reports. These responses could be provided to








97


1 Dr. White and Dr. Joseph for use in response to White

2 House inquiries."

3 "Item 2. Realizing that a fair amount of


4 judgment must be exercised by your reviewers in this

5 process, request you task your teams to use the following

6 criteria in selecting sensitive documents."


7 "A. Documents that could generate unusual

8 public/media attention."

9 "B. All documents which seem to confirm the

10 use or detection of nuclear, chemical, or biological


11 agents."

12 "C. Documents which make gross startling

13 assertions, i.e., A pilot's report that he saw a giant

14 cloud of anthrax gas."


15 "D. Documents containing releasable

16 information which could embarrass the government or DOD.

17 Statements as, We are not to bring this up to the press,


18 fit this category."

19 "E. Documents which shed light on missions

20 which have high levels of media interest, such as the

21 November 1995 "Life" article on birth defects among Gulf


22 War veterans' children. All such reports should be








98


1 flagged for investigation team and sent directly to them

2 by the fastest means available, e.g. -- example given --

3 e-mail, fax, mail, or even a personal courier."


4 "3. The investigation team will make two

5 determinations on each flagged record. One will be

6 whether or not the subject requires further research and


7 the other will be who, if anyone, would receive the

8 results of the research. As soon as these steps are

9 expedited, the investigational team will notify the

10 operational declassifier they have completed their part of


11 the process and that the document can be forwarded to DTIC

12 for placement on Gulflink."

13 "The investigation team will also notify the

14 declassifiers when particular incidents or units are no


15 longer considered potentially sensitive. In those cases,

16 the declassifiers should stop flagging or highlighting

17 reports on that incident or unit. The results of the


18 investigation teams' investigations ultimately will be put

19 on Gulflink," or so this memorandum does state.

20 "You are requested to ensure that your

21 declassifiers follow the former standards of review re:


22 the action and release of health-related operational








99


1 records. This will ensure that there is some consistency

2 in operational records of the services and commands that

3 are being made available to the public on Gulflink. It


4 also facilitates the use of forward and privacy exemption

5 codes in the redaction of documents."

6 And this is signed off by a Mr. Paul L. Boyer


7 who I -- this came to me through the mail. I don't have

8 any idea who sent it to me but I will tell you what. I

9 would like for you all to look into this if you could

10 because this sounds like a cover-up if I have ever seen


11 one. They are telling them what they can screen, what

12 they cannot screen.

13 I am not wearing these sunglasses because I

14 want to be Mr. Hollywood. I have developed


15 photosensitivity. I cannot even drive at night any more.

16 I am usually at home in bed but I made it to this trip

17 because I -- this is my swan dive.


18 DR. LANDRIGAN: Thank you for coming and thank

19 you for these --

20 SGT. LYONS: One other point, sir. If you will

21 notice in the distribution of that, you will see who all


22 is to receive it. It says, "Chief of Military History."








100


1 Joint chiefs of staffs are to receive this all the way up

2 to the Chairman, Director of Naval and Historical Center,

3 Director of U.S. Marine Corps Historical Center, Air Force


4 Declassification and Review Team."

5 This document needs to be examined and it needs

6 to be examined thoroughly. There is a lady who -- she was


7 an American poet and she said something once. And I have

8 wrote it down because I think that it makes a lot of sense

9 to me and I am not one to, after serving my country, want

10 to come up here and, you know, fight the system.


11 I love the Army. Okay? I have got over 13

12 years total federal service and I didn't ask for this to

13 happen to me. I wanted to retire but let's get this

14 straight. But her words rang so true to all of us that I


15 wanted to say this because it is -- her saying is, "To sit

16 in silence when one should protest makes cowards of men."

17 And that was by Ella Willard Wilcox and she was an


18 American poet. And I think those words ring true today.

19 Thank you.

20 DR. LANDRIGAN: Thank you, sir.

21 SGT. LYONS: I am prepared for questions if you


22 have any.








101


1 DR. LARSON: Thank you for coming so well-

2 prepared. It is very helpful to have all the

3 documentation. We appreciate it.


4 SGT. LYONS: You are welcome, ma'am.

5 DR. LARSON: I just have one question about

6 this last memo which we have not seen.


7 SGT. LYONS: Yes, ma'am.

8 DR. LARSON: There is no date on it. There is

9 a stamped date but do you know when this was distributed?

10 SGT. LYONS: No, ma'am. I really don't other


11 than that stamped date and then -- let me just state this.

12 I am having a hard time thinking. In a lot of inter-

13 office memos, that format will be used rather than an

14 official date.


15 Now, I don't know how -- that was mailed to me,

16 I tend to think, by someone who probably had seen what was

17 going on and didn't like what they saw. And I don't know


18 who else has received this other than me. Okay? It came

19 to my mailbox. I am running a nonprofit organization out

20 of Tennessee known as the Persian Gulf Information

21 Network.


22 This came to me with no return address or








102


1 nothing but I will tell you this. Please look into it.

2 DR. LANDRIGAN: We shall. Thank you.

3 SGT. LYONS: Anything else from anyone?


4 MAJOR KNOX: I have a question. Sgt. Lyons,

5 are you still on active duty?

6 SGT. LYONS: Yes, ma'am. I am.


7 MAJOR KNOX: And in your opinion, have you had

8 difficulty in expressing your symptoms or do you feel like

9 that you have been punished for that?

10 SGT. LYONS: Well, ma'am, it is like a lot of


11 these people have said here, you know. We -- at first, I

12 didn't want to admit that something was wrong with me and

13 I used to be a pre-air assault instructor and do the five

14 mile a day run and --


15 MAJOR KNOX: Right.

16 SGT. LYONS: -- bring everyone through air

17 assault school once a week and make sure that everyone


18 qualified and, you know, I basically put the Army ahead of

19 me because that was what I was trained to do. I didn't

20 ask anything for me, just the Army standards was what I

21 stood for and still do, as the best I can.


22 And I still have soldiers come up to me today








103


1 and say, Sgt. Lyons, I am sick with this or I am sick with

2 that. And I will ask them -- and they are active duty --

3 Have you put yourself on the registry yet? And they say,


4 No. And I say, Why not? And they say, Because it is a

5 death kill to your career.

6 I say, Look. You are going to have to draw the


7 distinction just like I had to. What is more important,

8 your health or your career?

9 And that is exactly what these soldiers are

10 going to have to do. But I tell you what. If they are


11 looking at it from the point of view that their career is

12 stigmatized by being on the registry, DOD needs to address

13 that and calm these people's fears that they are not going

14 to be put out of the Army if they get signed up on the


15 registry.

16 I have got a lot of sick soldiers that have

17 told me this. They are scared to register.


18 MAJOR KNOX: Do you know of any who have been

19 put out of the Army because they signed up for the

20 registry?

21 SGT. LYONS: Yes, I do. Yes, I do. Basically


22 railroaded out. How does that sound?








104


1 SGT. LYONS: Are there any other questions from

2 this honorable committee?

3 DR. LANDRIGAN: I think not. And thank you


4 very much, Sergeant, for coming before us this morning.

5 SGT. LYONS: Yes, sir. I am more than glad to

6 make it here.


7 DR. LANDRIGAN: Next, we have Ms. Betty

8 Zuspann.

9 MS. ZUSPANN: Thank you for allowing me to come

10 and speak today. Please forgive me if I get a little


11 hoarse or something. You might want to ask me later. I

12 suffer from actual Gulf War Syndrome. I was exposed to a

13 contaminated Iraqi map that came out of a bombed bunker

14 that was given to me and I was -- almost died and have


15 been ill ever since. And later on if you would like to

16 ask me about that, since I only have five minutes, I would

17 appreciate it.


18 I represent a wive's working group that has

19 been working since the Spring of 1992 of wives of veterans

20 who are very sick with Gulf War illnesses at the time. We

21 were trying to get some assistance from the Bush


22 administration. My husband was on the USS New Orleans








105


1 with his ship, the Midway.

2 My husband's ship was five miles off the coast

3 of Kuwait. For seven months, my husband's ship chartered


4 through burning oil derricks in the water. My husband's

5 ship was attacked by chemicals from Saddam Hussein when he

6 opened the oil pipes and let the oil spill out into the


7 Gulf. That is chemicals. I consider that a chemical

8 attack on my husband's ship, the USS New Orleans, and

9 George Bush did nothing about it.

10 My husband's ship and others floated on this


11 oil spill for seven months. My husband's ship volunteered

12 to go in and chart a course through these burning fields

13 and mines. To chart a course so that the other ships

14 could come in without getting blown up. They volunteered


15 to do this after the Tripoli was hit and had to be put

16 into dock.

17 My husband's ship was also docked at Bahrain,


18 Abu Dabi, and Dubai. While at Bahrain, they were under

19 SCUD missile attack. Mr. Vic Silvester's son was witness

20 to that attach. He was on the dock that night that the

21 SCUD missile went over MACH 4.


22 The alarms went off. My husband and 230 of his








106


1 crew members were asleep downstairs. They called general

2 quarters. My husband's crew never had MACH gear, ever,

3 while serving in the Persian Gulf. Yet they were in oil


4 fires for seven months.

5 They were on the oil spill. They ingested oil-

6 infested water. They cooked with it. They showered in


7 it. I have a copy of the Navy report that you have that

8 is dated 1992. You mentioned it in your interim report.

9 I also have the original copy dated 1991 of February, when

10 they had a meeting in Ohio -- Dayton, Ohio, with oil


11 people and scientists on what types of problems that the

12 Navy Department would have with sick people coming back

13 from the Gulf as a result of exposures to the spill, the

14 fires, and the other contaminants out in the Persian Gulf.


15 Radiation was a big concern because of the

16 tanks that held a lot of the chemicals and unrefined raw

17 unprocessed oil in the refineries that were blown up


18 because the tube -- the levels of tubes -- it is in the

19 report. You have read it. You have mentioned it. That

20 when they blew up the tubes, when the planes bombed the

21 factories or Saddam blew up the refineries or whatever,


22 that the radiation that was in those level tubes in those








107


1 storage tanks and refineries would spread radiation and no

2 one would no where this radiation would dissipate -- and

3 the thousands of other things that were in that report.


4 And this is not the original copy but this is a

5 copy I was given in Washington while my husband was in

6 Walter Reed in 1992. It was pulled out of a -- the other


7 copy was pulled out of a desk drawer at the Pentagon and

8 was shuffled out and given to us because my husband had

9 been asked to come forward by the American Legion and to

10 be a whistle-blower on the fact, at that time, in Spring


11 of '92, that there was a Gulf War problem and that they

12 were trying -- soldiers were calling in but they weren't

13 coming forward.

14 So I have been involved in this actively, like


15 Vic Silvester and others, since 1992. My husband has Gulf

16 War Syndrome. He has chemical sensitivity. I can tell

17 you he has chemical sensitivity because I live with it


18 every day. I do the IVs. I clean out the respirator. I

19 hang the IVs. I clean the air purifiers. I sit with him

20 night and day while he gasps for air. I am the one that

21 has to fight off the half a million dollars worth of


22 medical bills when the doctors and bill collectors call me








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1 wanting their money because the VA won't pay the bills.

2 The VA -- I have not had respite care or home

3 health in four solid years. I don't mean to cry. I


4 just -- these wonderful people served this country and

5 I -- they don't deserve what they are getting. And I am

6 asking President Clinton to please give them their dignity


7 back.

8 They fought for this country and I am telling

9 you whether it was oil, whether it was sand or chemicals

10 in the sand, dusty mustard -- I don't care what it was.


11 These people are injured. They were attacked. And I

12 watched yesterday on C-SPAN the commemoration of those who

13 died.

14 Colin Powell was there. He stood up and gave a


15 wonderful little speech about the poor people who died.

16 And I feel sorry for them and I feel sorry for their

17 families. They don't have to suffer like we have to


18 suffer and I feel sorry for them. And their pain is a lot

19 because their family member isn't here.

20 But I have to be honest with you. Sometimes I

21 wish Garry had died in the Gulf. He would have been


22 treated a lot better by this government if he had of. If








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1 they had brought him home with a flag on his casket, we

2 would have been treated a lot better than we have been

3 treated in the last four years by the Department of


4 Veterans' Affairs and the Department of Defense.

5 Walter Reed was an absolute nightmare. I am

6 not going into it other than to say that the doctors there


7 kept wanting him to get up, go home, and get a job. This

8 is a man who is six-four, weighed 126 pounds. Looked like

9 he had just come out of Auschwitz. Couldn't eat.

10 Diarrhea. Vomiting blood.


11 Know what they said to him? You are taking up

12 an AIDS-patient's bed. Why don't you get up, get over it,

13 and get a job. My husband has heart damage -- flexed

14 valve in his heart. His lung muscle tissue is


15 depleting -- wasting away. He has brain damage. He

16 bleeds through the eyes. He bleeds through the pores. He

17 bleeds through the gums.


18 I could go on and on and on. He has got

19 intestinal damage, stomach damage. He is in a wheelchair.

20 That complete clanging of that respirator every night and

21 that heart monitor going off all the time and that apnea


22 monitor going off all the time and that gasping for air.








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1 I live it every day.

2 I can tell you, my husband has Gulf War

3 Syndrome and chemical sensitivity and anything else you


4 want to call it. And he is going to die from it. That is

5 a fact I have to deal with. But his comment is, They may

6 have killed me but they ain't laid me down.


7 And I would like to address something --

8 several things if you would give me just one more minute,

9 please.

10 DR. LANDRIGAN: We need to be courteous to the


11 other witnesses.

12 MS. ZUSPANN: Yes. The Department of Defense

13 wrote me a letter. The Department said, Yes. Your

14 husband has Gulf War Syndrome. Yes, he has chemical


15 sensitivity. And yes, he has asthma. And yes, he got it

16 in the service. Yet I can't get the medical

17 bills paid or nothing. The statistics -- you can get


18 those. They are real easy. I will tell you how to get

19 them, Wendy. They gave me the death statistics on Friday.

20 This very last Friday they gave those to me.

21 They also gave me how many Persian Gulf


22 veterans are service-connected right now, this minute.








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1 And that is all I want to do is read those numbers, if you

2 don't mind, if you will allow me. They are called

3 Washington, the Bureau of Statistics at the Department of


4 Veterans' Affairs.

5 And people can argue whether it is a broken toe

6 or whatever. That is not my problem. These are the


7 Persian Gulf veterans who actually are service-connected

8 or pension at the Department of Veterans' Affairs as of

9 two o'clock on Friday: 142,945 are on disability

10 compensation rolls. Disability pension is 262. Total of


11 143,207. Deaths, 3,398. Pension deaths, 55.

12 I asked them how many death claims were

13 pending. They would not tell me. They said they also had

14 separately, for some reason, environmental hazard claims


15 pending, 6,553. Additional environmental claims

16 processed, 8,508. This does not include the 60,000 or

17 whatever the number is now of Persian Gulf-ers just


18 sitting on the registry without a diagnosis. I think that

19 is -- what, 60,000, something like that -- which would

20 bring that total around to 221,721.

21 If anybody wants to look up how many women


22 served in the Persian Gulf, I know that 18,000 service --








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1 women are service-connected as of today -- as of Friday

2 the 23rd.

3 DR. LANDRIGAN: Ms. Zuspann, I must ask you to


4 wrap it up. Thank you very much.

5 MS. ZUSPANN: And I am finished.

6 DR. LANDRIGAN: Thank you.


7 MAJOR KNOX: Ms. Zuspann, can you provide us a

8 copy of that?

9 MS. ZUSPANN: That is all going to Washington.

10 I didn't figure you all wanted to take it home with you on


11 the plane. Yes.

12 DR. LARSON: Just to clarify. Your husband has

13 been diagnosed with Gulf War Syndrome and multiple

14 chemical sensitivities that has been identified as being a


15 result of his service and you can't get your bills paid?

16 MS. ZUSPANN: No, ma'am. I can't. The Navy

17 says it is the VA's responsibility. The VA says it is the


18 Navy's responsibility and we go back and forth.

19 DR. TAYLOR: This is with a confirmed diagnosis

20 from a physician?

21 MS. ZUSPANN: Several physicians. The


22 Department of Veterans' Affairs, Houston; civilian








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1 physicians -- well, now the Department of the Navy Bureau

2 of Medicine. I have a letter from them saying he has

3 asthma, chemical sensitivity, and Gulf War Syndrome, they


4 regret to tell him. Thank you.

5 DR. LASHOF: Is he on disability from the VA,

6 then?


7 MS. ZUSPANN: Yes, ma'am. He is. But they

8 tell me they can't provide him medical care because if

9 they treat him for chemical sensitivity they will have to

10 treat the rest of him and they are not going to do it.


11 DR. LANDRIGAN: Thank you. Next we have Mr.

12 Charles Townsend.

13 MR. TOWNSEND: Madam Chairman, distinguished

14 members of the committee, ladies and gentlemen. My name


15 is Charles Townsend. I am a Gulf War veteran who has been

16 seeking government medical assistance for the past three

17 and a half years.


18 My experience with the government medical

19 system has ranged from supportive to being called a liar

20 by doctors at the VA about my physical symptoms that I had

21 told them about. From January 1992 to present, literally


22 and figuratively, all of my medical care has been from








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1 Dallas and Houston VA medical centers.

2 My frustrations with the medical systems of the

3 VA, the lack of so-called compassion that we and the


4 general public are continually being told is the goal of

5 the VA medical system -- it may well be placed in

6 perspective with the comments of the head of the regional


7 Persian Gulf center in Houston VA.

8 This gentleman comments -- I use the word

9 gentleman questionably -- this gentleman's comments in

10 regards to the Persian Gulf and the Vietnam Agent Orange


11 situation was both derogatory and mocking in nature. It

12 was an affront to me as a veteran and all who answered the

13 call of duty.

14 Increasing medical problems identified by


15 various Persian Gulf registry medical exams -- of which I

16 have had four -- C&P exams, VA doctors' examinations

17 resulted in my request to be examined at the Houston


18 referral center. Results of these exams and lack of

19 official medical records from my eight months of service

20 in the Persian Gulf starting in late August of 1990 have

21 resulted in the denial of any service connection


22 determination.








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1 Three straight Persian Gulf service connection

2 denials have resulted in all of the findings of the Dallas

3 and Houston VAs. Repeated requests for medical records of


4 the months that I was stationed in the Gulf to the VA from

5 various NSOs of various service organizations throughout

6 the years have resulted in several times the VA requesting


7 my medical records from that period and the latest one

8 being in November of 1995.

9 Yet the adjudication of my claim -- my prior

10 claim was at the end of January of '96. Of course, I was


11 denied. As we all know, there were several government

12 shut-downs as well as fall and winter holiday schedules

13 that restrict workload capabilities during this time

14 frame.


15 The particular claim was received by the

16 Persian Gulf claim processing center when it was located

17 in Nashville, Tennessee in September of 1994. The claim


18 center was closed down and my claim and files were

19 transferred to Louisville, Kentucky in January of 1995.

20 My claim continued through the process. And as I

21 mentioned earlier, the request for service medical records


22 was in November of 1995. And the claim was adjudicated in








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1 late January of 1996.

2 The paperwork trail for the past four years as

3 a Gulf War veteran has been a nightmare. Lost records.


4 Non-responses to medical requests. A great variation in

5 the -- and great variation in the professional medical

6 opinions between VA doctors and the downgrading of


7 examining doctors' opinion in front of patients by other

8 doctors has resulted in distrust of the system.

9 Members of the committee, the end result is

10 this. The fact that not only do I not receive service


11 connection for my medical problems as resulted from my

12 medical service in the Persian Gulf but as of now -- but I

13 have now, as have many others, developed a distinct

14 distrust for the majority of the medical professionals of


15 the VA medical community.

16 Members of the committee, ladies and gentlemen,

17 I thank you for this opportunity to address this


18 distinguished group and I would like to leave you with

19 this one thought. I spent the last 25 years contributing

20 to the defense of this nation and the various communities

21 that I have lived in.


22 I have one simple goal. To return to that








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1 capability and once again become a viable contributing

2 member of the community that I love, that is, the United

3 States of America. Thank you.


4 DR. LANDRIGAN: Questions for Mr. Townsend?

5 MR. TOWNSEND: Please ask me who these people

6 are that are saying such nasty things. After all, they


7 are medical VA doctors.

8 DR. LANDRIGAN: Please give it to us so that we

9 can take it with us.

10 MR. TOWNSEND: Pardon me?


11 DR. LANDRIGAN: Say them now if you would like

12 but also leave us something if you have their names

13 written down.

14 MR. TOWNSEND: On my person, I have my diary


15 that I kept in the five weeks that I was at the Persian

16 Gulf -- it is curious that the original Persian Gulf

17 referral center head in Houston was kicked upstairs and


18 the person who replaced him was the one that made the

19 comments that I alluded to.

20 And essentially he stated, "The Persian Gulf

21 Syndrome is exactly like the Agent Orange thing. I


22 believe that not one penny should have ever been paid to








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1 anyone for a claim of Agent Orange because at no time has

2 there ever been any scientific proof that the herbicide

3 harms human beings."


4 So the current head of the Persian Gulf

5 regional center in Houston doesn't believe in the job that

6 he is assigned to do. His name is Dr. Gorin. There is a


7 Dr. Gorin representative here because Dr. Gorin didn't see

8 fit to be here. So he sent a PA by the name of Susan

9 Killian who is in the audience.

10 DR. LANDRIGAN: Thank you.


11 MAJOR KNOX: What VA is that?

12 MR. TOWNSEND: Houston VA, which is the

13 regional center for this area -- for the referrals of VAs

14 who are not -- who do not know what is going on with the


15 vets. I had four Persian Gulf registry exams. What

16 they -- what the --

17 DR. LANDRIGAN: I am sorry. I can't let you go


18 on. We have to -- there are other witnesses but I will

19 glad to take questions from the panel. Okay. Thank you

20 very much, Mr. Townsend. Our last public witness now is

21 Ms. Joyce Riley. Ms. Riley, please.


22 I am sorry. There is no intent here to be








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1 disrespectful but we have a full panel of witnesses. We

2 have to respect each the time of the other. And we invite

3 any witness and also any other member of the public who is


4 here to submit any material in writing. It will be given

5 careful consideration.

6 MS. RILEY: My name is Joyce Riley. I served


7 with the 32nd AES in Kelly. I was a flight nurse. I was

8 in the Gulf War. However, I did not go to the theater of

9 operations. I was sick within six months after coming

10 back from the Gulf War.


11 The only thing I have in common with the rest

12 of the Gulf War veterans is that I received the

13 immunizations. I was quite ill. As you can see, I had a

14 multifocal central nervous system disease. It was never


15 determined why it was caused and it was a demyelinating

16 disease.

17 I served with the 32nd AES as a captain, flight


18 nurse only for about six months. I can assure you

19 biologicals and chemicals were used. I won't go into the

20 proof for this. I have been collecting it for over a

21 year. Biologicals and chemicals were used on our troops.


22 They were made in the United States -- Houston, Boca








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1 Raton, and Maryland.

2 We will prove this with or without the DOD's

3 help, with or without the Pentagon's help, and with or


4 without the Presidential Advisory Committee's help. It is

5 tantamount to crimes of treason and trading with the enemy

6 and silence truly is consent.


7 I have a radio talk show in Houston and we are

8 continuing to get this word out throughout the United

9 States. Biologicals have been used on our troops. Our

10 men and women are sick and dying. There is no question


11 they are sick and dying. I am going to give away the next

12 few minutes of my time to a song that has been written by

13 Dave Ruddell.

14 Dave Ruddell has a radio talk show in


15 Connecticut. He wrote the song, "Where are the Voices

16 that Care?" It is dedicated to all of you who are sick,

17 who are dying, and all of your family members. This song


18 is available free of charge to all Gulf War veterans.

19 America, we do know the truth.

20 (Pause.)

21 MS. RILEY: There are some audio tapes in the


22 back and there will be some information for the Gulf War








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1 veterans. America, we must not forget. Are there any

2 questions?

3 DR. LANDRIGAN: Thank you, Ms. Riley. Any


4 questions for Ms. Riley?

5 DR. LARSON: I just have one question. You

6 said you have some evidence that you are collecting about


7 the chemical and biological warfare and it would be very

8 helpful for us to have that.

9 MS. RILEY: Certainly. I have a packet of

10 information I will be providing you now and more later.


11 DR. LARSON: Great. Thank you.

12 DR. LANDRIGAN: Thank you. All right. Well,

13 this concludes the public testimony. I have one or two

14 other folks that had asked if they could be heard and I


15 would like to be able to do so but we are already past

16 time and we have Dr. Claudia Miller due to come on now.

17 What I will try to do is if anyone -- we will


18 try to make some time at the end of the afternoon but I

19 realize that gets raggy towards the end because it is the

20 end of the day. But we have to stick to the schedule

21 because we do have other speakers on.


22 I repeat the earlier offer. Anyone who has any








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1 material that they wish to submit us in writing -- and

2 that could be supplement to oral testimony or material

3 which is just submitted -- we will gladly receive it and


4 give it careful consideration.

5 So now we will change gears and switch over to

6 the first of the medical presentations. And this will be


7 a presentation by Dr. Claudia Miller from the University

8 of Texas Health Center here in San Antonio and she will

9 speak on multiple chemical sensitivity.

10 DR. MILLER: Thank you for the invitation to


11 address your committee. Over the past three years, I have

12 served as consultant to the Department of Veterans'

13 Affairs Regional Referral Center for Persian Gulf War

14 Veterans in Houston, Texas. I have also served on the


15 Department of Veterans' Affairs Persian Gulf Expert

16 Scientific Committee since its inception.

17 I am boarded in allergy and immunology and


18 internal medicine and have authored or co-authored

19 approximately 20 scientific publications on multiple

20 chemical sensitivity or MCS.

21 There is a growing sense of urgency among


22 physicians, scientists, and the public about chemical








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1 sensitivity and the need to define it and understand it.

2 Several factors have contributed to this sense of urgency.

3 First, increasingly, private and academic physicians are


4 reporting MCS or features of it in their patient

5 populations which include Gulf War veterans.

6 Secondly, MCS appears to be associated with


7 severe and protracted disability in a large percentage of

8 cases.

9 Third, the societal costs of MCS in terms of

10 lost productivity, medical bills, compensation claims, and


11 litigation are huge. 40 percent of 112 MCS patients we

12 surveyed reported having seen ten or more healthcare

13 practitioners. While 80 percent reported working full-

14 time prior to their exposure, at the time of our survey


15 which was on average seven years later after their

16 exposure, 80 percent said they were unable to work or

17 could only work part-time.


18 The majority of MCS patients appear to be

19 credible individuals -- schoolteachers, mechanics, nurses,

20 lawyers, technical staff at the Environmental Protection

21 Agency, and soldiers with good prior work records who


22 report major deterioration in their health and ability to








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1 function following an identifiable exposure to chemicals.

2 Multiple chemical sensitivity has been

3 attracting increasing scientific interest over the past


4 few years. A number of federal agencies including the

5 National Research Council, the Agency for Toxic Substances

6 and Disease Registry, the Environmental Protection Agency,


7 and the National Institute of Environmental Health

8 Sciences have sponsored workshops on MCS.

9 In addition, a federal interagency working

10 group on MCS has been formed. Two days ago, I returned


11 from a World Health Organization workshop on MCS held in

12 Berlin, where clinicians and scientists from the United

13 States, Canada, and Europe formulated policy and research

14 recommendations.


15 Because of the current lack of scientific data

16 on MCS, participants accorded a high priority to research.

17 In particular, double-blind placebo-controlled challenge


18 studies to distinguish psychogenic from toxicogenic

19 responses were deemed essential and urgent in order to

20 define the nature and origins of these patients'

21 environmental intolerances so that effective treatment,


22 public health protection, and policies can be developed








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1 and implemented.

2 Chemical sensitivity is a complex phenomenon

3 that cannot be addressed adequately in the short time


4 available today. Given the importance of this problem in

5 the eyes of many Gulf veterans, other patients, and

6 scientists, I hope your committee will consider devoting


7 more time to it at a later meeting. It is one of the few

8 mechanistic hypotheses that offers a plausible link

9 between the Gulf veterans' illnesses and environmental

10 exposures.


11 In this presentation, I will focus on three

12 points.

13 First, there are striking similarities between

14 MCS and the unexplained illnesses of the Gulf War


15 veterans. Second, neither MCS nor the

16 veterans' illnesses constitute a specific syndrome nor are

17 they explainable by any currently known mechanism for


18 disease. However, the similar phenomenologies of both

19 conditions suggests that a new mechanism -- new general

20 mechanism or theory for disease involving chemically

21 induced loss of natural tolerance could be operative.


22 This theory of disease has been called, "toxin-induced








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1 loss of tolerance."

2 Third, carefully conducted scientific studies

3 will be needed to determine whether chemical intolerances


4 explain the symptoms of MCS patients and/or Gulf veterans.

5 Such research will require that double-blind placebo-

6 controlled challenges using chemical at concentrations


7 encountered in normal daily living be used to challenge

8 patients to test them while they stay in a specially

9 designed hospital research unit, a so-called Environmental

10 Medical Unit.


11 Could I have the first slide? This graph --

12 this cartoon, if you will, depicts the two-step process

13 that has been described for chemical sensitivity. First,

14 exposure of a susceptible individual -- we don't know what


15 constitutes susceptibility any more than we know what

16 constitutes susceptibility for something like

17 anaphylaxis -- to low level -- to an initiating exposure


18 event which may be combustion products, solvents, air in a

19 sick building or medications.

20 Subsequently, loss of specific tolerance in

21 that individual so that in subsequently low-level


22 exposures -- a variety of types ranging from fragrances to








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1 solvents to traffic exhaust -- may trigger symptoms in

2 that sensitive individual. And here as physicians, we

3 look at the symptoms we are presented with clinically and


4 try to render a diagnosis based upon those symptoms,

5 perhaps not being aware of what has gone on previously.

6 This, I want to emphasize, is a theory for


7 illness that has been called, "toxin-induced loss of

8 tolerance." Masking here, which sort of obfuscates all of

9 the prior processes, really amounts to the overlapping

10 symptoms that people may experience if they have multiple


11 sensitivities to many different common exposures. And if

12 they have multiple sensitivities, those symptoms will

13 overlap in time and they may not be able to determine that

14 one particular exposure is causing problems in the face of


15 so much, let's say, background noise.

16 Briefly, chemical sensitivity appears to entail

17 two steps which outwardly resemble those that occur with


18 allergic sensitization but do not involve the same

19 mechanism. First, induction of sensitivity as we talked

20 about Step 1 there on the picture. And Step 2, triggering

21 of sensitivities.


22 The inducing or initiating exposure, as I said,








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1 may be any of a wide variety of exposures and it may be

2 acute as in a chemical spill, intermittent as in many

3 industrial exposures, or chronic as in a sick building.


4 Loss of tolerance appears to occur as a consequence of

5 this initial exposure.

6 Subsequently, extremely low levels of


7 chemicals -- levels that do not bother most people and

8 were never a problem for that individual before -- trigger

9 symptoms. The veterans' health complaints resemble those

10 of chemical sensitivity patients when these patients first


11 became ill, before they were aware of any relationship

12 between their symptoms and exposures.

13 In the earliest stages of their illness,

14 chemical sensitivity patients often report flu-like


15 symptoms that do not go away. They frequently receive a

16 diagnosis of chronic fatigue syndrome. Later, they say

17 that specific exposures trigger their symptoms. They may


18 not become aware of this until another individual or

19 physician points this possibility out to them and they

20 undertake a trial of avoidance and re-exposure.

21 In addition to their sensitivity to specific


22 inhalants, individuals with this problem frequently report








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1 intolerances to various medications and foods and may also

2 report intolerances for alcoholic beverages, caffeine, or

3 tobacco.


4 In the early stages of their illness, they may

5 be unaware of any specific food intolerances and may only

6 report abdominal discomfort, bloating, diarrhea, extreme


7 fatigue, or other symptoms after meals. Only by testing

8 one food at a time do MCS patients say they were able to

9 learn which particular foods they could no longer

10 tolerate.


11 In 1989, I co-authored a report on MCS for the

12 New Jersey State Department of Health. The report

13 identified four groups in which chemical sensitivities had

14 been described: industrial workers, sick building


15 occupants, persons living in contaminated communities

16 around super fund sites, for example, and individuals with

17 heterogeneous personal exposures to drugs, pesticides, or


18 other substances.

19 Subsequently, we conducted a questionnaire

20 survey on MCS. Responses of 37 patients who reported

21 developing this problem following an organophosphate or


22 carbamate exposure and 75 who reported onset of MCS








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1 following exposure to air contaminants associated with

2 remodeling of a building were compared with those of 112

3 age-, gender-, and education-matched controls.


4 Later, the same questionnaire was administered

5 to the first 59 consecutive Gulf veterans referred to the

6 Department of Veterans' Affairs' Houston Regional Referral


7 Center for comprehensive evaluation. Eight symptom scales

8 were derived via factor analysis and were compared for the

9 four groups.

10 Striking similarities were seen with most of


11 the veterans' responses, which are in the yellow bars

12 here, falling between those of the two MCS groups. The

13 blue bars are people who said they developed chemical

14 sensitivity after an organophosphate or carbamate


15 exposure. The purple, after remodeling of a building.

16 These are the matched controls for the two MCS

17 populations.


18 The scales here related to muscle-related

19 symptoms and these are factor analysis scales. Head

20 related symptoms such as headache, cognitive difficulty

21 such as memory and concentration problems, affective


22 problems -- either depression or irritability or anxiety,








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1 heart related problems like palpitations, gastrointestinal

2 difficulties, digestive difficulties, airway problems,

3 breathing difficulties, and neuromuscular complaints.


4 And the symptom severity scale went from zero

5 to 30. And you can see where people lay on those scales.

6 These are the means for each of those groups. Similar


7 ordering in terms of overall severity was seen from the

8 scales of the veterans' groups and the two MCS groups.

9 The Department of Veterans Affairs' Houston

10 Regional Referral Center has assumed a leadership role in


11 recognizing the importance of obtaining comprehensive

12 exposure histories in evaluating veterans -- to my

13 knowledge, this is the only VA doing this -- and in

14 helping veterans understanding the current controversies


15 in the medical profession concerning MCS. You heard from

16 some of the patients that I have seen earlier.

17 While taking detailed histories on almost 100


18 veterans, I have learned that the majority report new

19 intolerances since the Gulf War. Most patients do not

20 routinely report such intolerances to a physician even if

21 they have them. Generally, they will focus on describing


22 symptoms like headache or confusion.








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1 Further, if they were to say they had trouble

2 concentrating or felt nauseated while driving, it is

3 unlikely that they or their physicians would entertain the


4 notion that the symptoms might be triggered by exposure to

5 traffic exhaust and yet that is exactly what MCS patients

6 report.


7 Physicians need to ask patients about new

8 chemical, food, and other intolerances and not expect

9 patients to volunteer such information. This is a

10 breakdown of the kinds of intolerances reported by the


11 veterans -- the first 59 seen at the Regional Referral

12 Center. And this was before much had been in the press

13 about chemical sensitivity.

14 Chemical inhalants were reported to cause


15 problems in 78 percent. For example, former mechanics who

16 said they used to enjoy the smell of engine exhaust and

17 literally bathe in solvents without any difficulty now


18 report severe symptoms with these exposures since the war.

19 In addition, 78 percent reported new

20 intolerances to foods since the Gulf War. 40 percent of

21 those who had taken medications reported one or more


22 adverse drug reactions. 66 percent of those who used








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1 alcoholic beverages reported that even a small amount --

2 for example, one can of beer -- made them feel ill. And

3 25 percent of those who used caffeine reported they felt


4 ill if they drank coffee or another caffeinated beverage.

5 This is a Venn diagram to show the overlaps of

6 these various intolerances -- drug intolerances of various


7 kinds, chemical inhalants, and foods. And you can see

8 that the majority -- in fact, 61 percent of the veterans

9 we have seen report intolerances in all three categories

10 that are new since the war. And 88 percent reported


11 intolerances in one or more of those three categories.

12 Neither MCS nor the veterans' illnesses fulfill

13 criteria for being a syndrome; that is, a constellation of

14 symptoms that form a picture of a disease. Nor does the


15 phenomenology of MCS or the veterans' illnesses fit that

16 of any known medical or psychiatric disease.

17 On the other hand, certain observations suggest


18 that MCS and the Gulf veterans' illnesses could have an

19 organic basis. These observations include:

20 Number One. The demographic diversity of

21 groups who have reported similar problems following an


22 exposure event -- as I mentioned, office workers, people








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1 exposed to pesticides in their home, and now the Gulf

2 veterans.

3 The temporal cohesiveness between onset of


4 these multiple intolerances and an exposure event.

5 Number Three. The internal consistency in

6 these patients reporting not only intolerances to airborne


7 chemicals but also to various foods, drugs, caffeine, and

8 alcoholic beverages including things that they used to

9 enjoy eating, like having a beer once in a while or having

10 some pizza.


11 And fourth, the observation that many MCS

12 patients who have avoided problem chemicals and foods

13 report marked improvement or even resolution of their

14 symptoms. Historically, new theories of disease have


15 arisen when physicians observe patterns of illness that

16 did not fit accepted explanations of disease in their

17 time, for example, the germ theory or the immune theory of


18 disease. Likewise, illness under discussion here do not

19 conform to current accepted explanations for disease or

20 toxicity.

21 Objections to chemical sensitivity have


22 included concerns that too many different chemicals are








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1 involved and have been said to cause it. Patients report

2 too many symptoms involving any and every organ system,

3 that there is no known physiological mechanism to explain


4 it, that no biomarker for it has been identified, and that

5 total avoidance of chemicals is impractical. These are

6 some of the common objections that we hear to chemical


7 sensitivity.

8 Theories of disease attempt to explain what is

9 going on inside a black box, if you will -- the patient --

10 prior to overt illness, as illustrated here. Exposure to


11 an agent of some kind, the individual who is exposed

12 develops some kind of response.

13 A theory of disease, I should emphasize, is a

14 yet-to-be-proven general mechanism for a class of


15 diseases. This is by no means established. It is a

16 theory. For the germ theories of disease, the boxes

17 depicting the general mechanism of infection look


18 something like this, of course, exposure to a germ,

19 reproduction of those, and then transmission to a second

20 host.

21 Here we see that many different kinds of germs


22 cause responses. There are many different responses








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1 involving any and every organ system -- pneumonia,

2 meningitis, cellulitis, and so on. Specific mechanisms

3 vary greatly although they have the same general


4 mechanism. Cholera, AIDS, shingles all have different

5 specific mechanisms.

6 There is no single biomarker. Identifying


7 specific germs took years. And notably prevention,

8 avoidance of exposure to these agents -- antiseptics,

9 sanitation, use of gloves preceded knowledge of specific

10 mechanisms.


11 For the immune theory of disease, the boxes

12 would look like this. Exposure to some kind of antigenic

13 substance with production of antibodies. Subsequently,

14 exposure to that same antigen triggering a response in the


15 host.

16 Once again note that many different kinds of

17 antigens cause responses. There are many different


18 responses involving any and every organ system -- the

19 skin, respiratory tract and gastrointestinal system, for

20 example. And specific mechanisms vary greatly. For

21 example, poison ivy versus allergic rhinitis versus serum


22 sickness.








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1 There is no single biomarker. Identification

2 of specific antibodies, in fact, took years. Prevention,

3 including avoidance and allergy shots, preceded knowledge


4 of specific mechanisms.

5 For the illness under discussion here, toxin-

6 induced loss of tolerance, again a theory of disease, the


7 boxes might look something like this. Exposure of the

8 host to a chemical event with subsequent loss of

9 tolerance. And we are talking about natural tolerance --

10 prior natural tolerance. And later other chemicals at low


11 levels triggering in that host symptoms.

12 Again note, that as for the germ and immune

13 theories of disease, many different kinds of chemicals may

14 cause responses. There may be different responses


15 involving any and every organ system. The specific

16 mechanisms may vary greatly and it is conceivable that

17 there is no single biomarker for response. Identification


18 of biomarkers in this area may also take years.

19 Prevention, of course, may precede our knowledge of

20 specific mechanisms in some cases.

21 While the concept, "loss of tolerance," may


22 sound vague, in fact it is not. What these individuals








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1 report is a loss of specific tolerance to particular

2 chemicals, foods, and so on. Note that this theory does

3 not exclude the possibility that toxin-induced loss of


4 tolerance could turn out to be a special case of the

5 immune theory of disease just as allergy or delayed-type

6 hypersensitivity are special cases that fall under the


7 general classification of immunological disorders.

8 One consequence of viewing toxin-induced loss

9 of tolerance as a possible theory of disease is a shift in

10 our perspective from chemical sensitivity as a syndrome to


11 chemical sensitivity or now toxin-induced loss of

12 tolerance as a class of disorders parallel to infectious

13 diseases or immunological diseases.

14 Much effort has been devoted to developing a


15 case definition both for chemical sensitivity and for the

16 Gulf veterans' illnesses with a singular lack of success.

17 This lack of success would not be surprising if, in fact,


18 these illnesses represented a new class or family of

19 disorders.

20 Certainly, it would not be feasible to develop

21 a single clinical case definition that would embrace all


22 infectious diseases. New theories for disease that








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1 withstand scientific scrutiny come along infrequently.

2 The past century has witnessed the inculcation of the germ

3 and immune theories of disease into medical practice.


4 Equating toxin-induced loss of tolerance to

5 either of these theories, both of which have been widely

6 corroborated, would be premature and presumptuous. At the


7 same time, toxin-induced loss of tolerance does have many

8 of the earmarks of an emerging theory of disease,

9 including the vituperative professional disputes which

10 surround it.


11 What is plausible depends upon the biological

12 knowledge of the time. Two-thirds of the 660,000 deaths

13 during the Civil War -- that is almost two-thirds of a

14 million deaths -- were caused by infections. However,


15 military physicians at that time had no concept of

16 microbes or infectious diseases.

17 Cases with fevers were divided into three


18 categories: remittent, intermittent, and relapsing.

19 Unrelated diseases likely were assigned to those

20 categories, for example, typhus, typhoid, malaria,

21 abscesses, tuberculosis, leptospirosis, borrelia,


22 pneumonia, and so on.








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1 Civil War surgeons commonly attributed

2 disease -- or misattributed disease -- to toxic miasma or

3 effluvia from the swamps or inadequate ventilation in the


4 tents. Only a few years after the Civil War, a series of

5 discoveries led to the development of the germ theory of

6 disease.


7 It is conceivable that medical understanding of

8 chemically induced disorders today is only beginning to

9 develop and that MCS and the Gulf veterans' unexplained

10 illnesses are some of the first evidence that current


11 explanations for disease are not sufficient and that a new

12 theory of disease is about to emerge.

13 In talking about these responses that

14 individuals have to an exposure, there is some convenient


15 shorthand that can be used. In the caffeine -- or, in the

16 addiction literature, the response to a substance that a

17 person is sensitive to is often depicted by a biphasic


18 curve with certain stimulatory symptoms with onset of

19 exposure and withdrawal symptoms at offset of exposure.

20 This parallels what has been reported by

21 veterans who have sensitivities now to caffeine, alcohol,


22 solvents. They may have initial symptoms of a certain








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1 variety and then withdrawal symptoms such as headache,

2 lethargy, and depression.

3 Now, in a normal person who might be exposed to


4 a particular substance and is not sensitive, this line

5 would be a flat line. But in a very sensitive patient,

6 this might be depicted by a biphasic curve like this with


7 amplitude that, as the amplitude was greater, would

8 reflect the greater severity of symptoms.

9 During the day, if a person were putatively

10 sensitive to chemicals, they got up, perhaps used


11 hairspray, went and used their gas stove, drove through

12 heavy traffic, went to an office building where people

13 were wearing fragrances, were around some cigarette

14 smokers and so on -- things that they might be sensitive


15 to -- these various responses to individual exposures

16 might overlap in time resulting in an apposition or an

17 overlap of the symptoms.


18 Because there are so many symptoms occurring

19 simultaneously, many times the patients will say that they

20 cannot discern what particular exposure is causing what

21 effect. It is only when they avoid a substantial number


22 of exposures and foods that cause problems that they can








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1 actually decipher what exposure is causing which symptoms.

2 Once chemically sensitive individuals become

3 ill, because their sensitivities appear to spread to a


4 multitude of common exposures, it may be important for

5 them to be removed both from the original exposure and

6 from other chemicals that now may trigger adverse


7 symptoms.

8 Sorting out which exposures are perpetuating

9 the illness may be very difficult. Environmental chemical

10 exposures are ubiquitous. The resultant symptoms may


11 overlap in time and to some degree, individuals adapt as

12 exposure continues.

13 Urgently needed is a clinical approach for

14 determining whether chemical intolerances are at the root


15 of these patients' problems. There is a growing consensus

16 that important questions concerning causation in this area

17 cannot be answered without appropriate studies in a


18 controlled environment or Environmental Medical Unit -- a

19 hospital environment in which chemical exposures have been

20 reduced to the lowest levels practicable via specialized

21 air filtration and use of construction materials and


22 furnishings that do not release chemicals into the air.








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1 There, in accordance with scientific protocols,

2 patients could be removed from their usual home and

3 workplace exposures to see if they improve and if they do,


4 be re-exposed to very low levels of common chemicals to

5 see whether their symptoms recur.]

6 For research purposes, such testing should be


7 conducted in a double-blind placebo-controlled manner.

8 And this graph illustrates these potential sensitivities

9 overlapping in time, entering in a clean environmental

10 unit, which I will show you a picture of in a moment, the


11 symptoms resolving over a several-day period, which is

12 what has been described in the MCS literature, and

13 subsequently re-exposure to single substances one at a

14 time allowing ample time between them so that symptoms do


15 not overlap.

16 The picture of what an environmental unit might

17 look like -- and this has been done in the civilian sector


18 but never in a research setting and that is specifically

19 what is needed -- is a hospital room that has been -- from

20 which substances and materials that out-gas or release

21 volatile organic chemicals have been removed, perhaps


22 using terrazzo or tile flooring with non-out-gassing








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1 grouting, porcelain on steel walls, placing things like

2 televisions -- which do out-gas from the components as

3 they heat up -- in a ventilated enclosure and so on.


4 In essence, what we are proposing is that

5 there -- a series of postulates that one can use for

6 testing the etiology of these symptoms and determining


7 definitively whether they are or are not caused by

8 chemical exposure. First, if all chemical and food

9 incitants are simultaneously avoided as in an

10 environmental unit, remission of symptoms should occur.


11 Secondly, a specific constellation of symptoms

12 should occur with reintroduction of an incitant, if indeed

13 the person is sensitive to it. The symptoms should

14 resolve when that incitant is again avoided, whether it is


15 a chemical or a food.

16 With re-exposure to the same agent, the same

17 constellation of symptoms should reoccur, provided that


18 the challenge is conducted within an appropriate window of

19 time, meaning that the exposures do not overlap each other

20 and that so much time doesn't elapse that people's

21 sensitivities may wane.


22 Availability of an Environmental Medical Unit








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1 would allow physicians to refer a wide variety of cases in

2 which environmental sensitivities were suspected to the

3 unit for more definitive evaluation. There, physicians


4 could observe firsthand whether a sick patient's symptoms

5 improved after several days on a special diet in a clean

6 environment.


7 If improvement occurred, single chemicals at

8 concentrations encountered in normal daily living and

9 single foods could be reintroduced one at a time while the

10 effects of each introduction were observed. Thus, the


11 environmental unit would serve as a tool for ruling in or

12 ruling out environmental sensitivities in the most direct

13 and definitive manner possible.

14 Studying complicated patients like chronic


15 fatigue sufferers or ill Gulf War veterans in a

16 conventional exposure chamber would provide none of the

17 same information since chambers allow only short-term


18 residents, do not control the entire range of background

19 contaminants for sufficient periods, and provide

20 inadequate separation from background exposures prior to

21 challenges.


22 An analogy illustrates the importance of








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1 controlling exposures for extended periods prior to

2 challenge. If one wished to determine whether headaches

3 in a coffee drinker with a 10- to 15-cup-per-day habit


4 were due to caffeine, it would not work simply to give the

5 person a cup of coffee and ask him how he felt.

6 It is intuitively obvious that the patient


7 would need to stop using caffeine for a while before a

8 meaningful test of caffeine sensitivity could be

9 performed. In this instance, a false negative test would

10 be the most likely consequence of failure to avoid


11 caffeine or coffee prior to challenge.

12 Similarly, placing a putatively sensitive --

13 chemically sensitive person in a conventional exposure

14 chamber and exposing him to a few parts per million of a


15 chemical might not produce any noticeable effect, at least

16 not reliably. On the other hand, if you were to remain in

17 a clean environment for a few days -- an environmental


18 unit -- before being tested and his condition improved,

19 one could then perform meaningful challenges.

20 This approach to research -- blinded challenges

21 in a controlled environment -- was recommended by


22 physicians and researchers attending two national








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1 workshops on chemical sensitivity -- one organized by the

2 National Academy of Sciences and the other by the Agency

3 for Toxic Substances and Disease Registry.


4 Without carefully conducted challenge studies

5 of this kind, questions concerning etiology -- that is,

6 toxicogenic versus psychogenic -- cannot be resolved.


7 Although research in such an environment unit has been

8 proposed to the Department of Defense, Department of

9 Veterans' Affairs, and the National Institute of

10 Environmental Health Sciences, studies of this nature have


11 not yet been funded.

12 While Congress authorized partial funding for

13 such a project and the Department of Defense agreed to

14 provide the remainder, an Environmental Medical Unit still


15 has not been constructed.

16 In summary, the illnesses of MCS patients and

17 Gulf veterans share much in common: similar kinds of


18 symptoms and loss of prior tolerance for chemicals, foods,

19 and drugs following an exposure event. Their illnesses

20 point to a new general mechanism or theory of disease

21 described as toxin-induced loss of tolerance.


22 Not everyone develops this problem just as not








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1 everyone develops allergic sensitization. Confirmation or

2 reputation of this theory rests upon future double-blind

3 placebo-controlled challenges conducted in an


4 Environmental Medical Unit. Thank you.

5 DR. LANDRIGAN: Thank you very much. We have

6 some time for questions from the panel.


7 DR. LARSON: Dr. Miller, thank you very much.

8 A couple of questions. First, could you give us a better

9 picture of the prevalence and the spectrum of illness

10 and -- in the general population -- how common is it and


11 of some of the etiologic exposures that have been

12 recognized outside the Gulf War veterans?

13 DR. MILLER: There is no data on the general

14 population although four surveys have been done -- two on


15 populations in Arizona, one on EPA workers -- about 4,000

16 of them -- and one on rural individuals living in North

17 Carolina.


18 And the surveys show roughly a third of

19 individuals report intolerances to particular chemicals.

20 However, that may include a wide range of things and it

21 was a very nonspecific questionnaire item that was asked.


22 This does not count people who are disabled by such








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1 exposures, however, so you can't equate that to multiple

2 chemical sensitivity.

3 MCS may be sort of the tip of that iceberg and


4 we don't have data on that right now. The state of

5 California has been trying to put together a survey to

6 actually look at people after an exposure -- a spill --


7 and see how many eventually evolve into this kind of

8 problem.

9 Your second question?

10 DR. LARSON: The spectrum of illness.


11 DR. MILLER: The spectrum of illness is very

12 wide. The most common complaints are fatigue, memory and

13 concentration difficulties, and mood changes such as

14 irritability or depression. Sudden anger, for example,


15 driving your grocery cart down the detergent aisle and

16 smelling the detergent and getting very angry at people

17 and feeling like, you know, you want to run them over with


18 your grocery cart -- very irrational responses that the

19 patients recognize are irrational.

20 The veterans are experiencing similar things,

21 sometimes when they are driving. They report it when --


22 some of them call it short-fuse syndrome -- that they








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1 easily fly off the handle. And it is up to the

2 practitioner to look to see when those episodes occur, is

3 there a chemical exposure occurring contemporaneously?


4 That might explain some of those things.

5 Most veterans and patients aren't aware of --

6 even to look or be a detective insofar as --


7 DR. LARSON: Well, what I really meant was,

8 people -- is it a progressive illness where people will

9 die?

10 DR. MILLER: Well, it is progressive in that,


11 as I mentioned, of the survey patients I showed you here

12 who had MCS, 80 percent had been working full-time prior

13 to our -- prior to their exposure. And this was either a

14 sick building or a pesticide.


15 And subsequently when we surveyed them seven

16 years later, 80 percent said they could no longer work

17 full-time and most were not working at all. So yes, it is


18 progressive and their sensitivities seemed to spread to

19 involve other exposures. At least, this is the

20 observation clinically.

21 The proof of this is something else but


22 clinically, the observations are the sensitivities spread








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1 over time.

2 DR. LARSON: And could you give us a sense of

3 whether an effect -- a genetic or a hereditary effect --


4 the birth defects -- could that in any way be biological

5 plausible or consistent with this theory?

6 DR. MILLER: There is no data right now on MCS


7 patients in terms of effects on offspring so I can't

8 address that question.

9 DR. LARSON: Then just last question because I

10 know everybody else wants to ask, too. Why hasn't this


11 environmentally protected unit been built? You said there

12 is funding?

13 DR. MILLER: Well, the funding was

14 appropriated -- authorized by Congress for a portion of


15 such a unit. Department of Defense agreed to put up the

16 rest of the money. A solicitation went out. Money was

17 spent, as I understand it, but not to construct an


18 environmental unit so there seems to have been some

19 confusion about what the congressional intent was on this

20 issue.

21 DR. TAYLOR: Of the patients that you diagnosed


22 with MCS, following their diagnosis, you removed them from








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1 certain chemical exposures. Do any of these patients

2 return to work and how many of them actually improve?

3 DR. MILLER: First of all, I don't diagnosis


4 chemical sensitivity. This is a theory right now but one

5 for which there is a great deal of clinical support in

6 terms of observations. So certainly I think research is


7 needed in this realm.

8 There are a limited number of anecdotal cases

9 where people have returned to work after stopping the

10 initial exposure. A scientist at one of the universities


11 who stopped his exposure very early and avoided many

12 chemical exposures and was able to return to work.

13 And his -- in fact, his sensitivities

14 apparently resolved completely. Most of the patients are


15 later in their diagnosis. No physician recognizes this.

16 They continue to be exposed and it appears that the longer

17 they are exposed and continue to have these symptoms, the


18 less -- or, the longer the time it takes for their

19 symptoms to abate once they do start avoiding exposures.

20 Let me say that avoiding exposures is nothing

21 anybody wants to do. It is not a great way to live.


22 DR. TAYLOR: It can be pretty hard.








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1 DR. MILLER: That is right. It could be very

2 hard to do although some people only have a few

3 sensitivities. Others may have many more. But by using


4 an environmental unit as a research tool to first of all

5 document that this is or is not organic in nature and then

6 to look for an underlying mechanism.


7 That really is where the payoff will be. If

8 you can identify the mechanism, then you can gear your

9 therapies to that mechanism. So we are a long way off,

10 from a scientist's perspective, in terms of offering


11 therapies we know will be helpful to veterans.

12 They may find some things in the interim that

13 help them. Many of them report avoiding exposures is the

14 only way that they can maintain any sense of health. But


15 we are a long way from defining mechanisms in this area.

16 MR. RIOS: You answered part of this but maybe

17 you could give us a thumbnail sketch on what the status of


18 the research is on this endeavor, whether it is in private

19 industry or is it just that particular project that you

20 referred to earlier?

21 And secondly, what would you recommend that


22 this committee recommend insofar as how it could impact








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1 the Gulf War veterans?

2 DR. MILLER: There is a tremendous need to do

3 research in the unit and there have been many conferences


4 that have pointed in that direction. Prior chamber

5 studies that have been done in this area have not been

6 sufficient to resolve these questions.


7 In the interim, there have been a few

8 studies -- epidemiological studies to characterize the

9 populations, some studies looking at maybe a specific

10 mechanism like kindling -- but none of them have focused


11 on a central question which is, do chemicals trigger

12 symptoms in these individuals?

13 And until that question is definitively

14 resolved, we cannot begin to answer, you know, what kind


15 of treatments we should be offering people. Should there

16 be psychological kinds of therapies? Should there be, you

17 know, avoidance kinds of strategies? Should we -- what


18 kind of prevention should we be undertaking? Or what

19 sorts of preventive policies and other policies --

20 compensation policies we should adopt in this area.

21 So the primary recommendation, I think, that


22 you could make that would be of a great deal of help would








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1 be to at least find out what has happened to this whole

2 project because I myself don't know what has happened to

3 it, and to determine whether you feel this is an area in


4 which investigation needs to proceed.

5 As I say, from my perspective, I was an

6 industrial hygienist for 12 years before I became a


7 physician. This is one of the few etiologic hypotheses

8 that make any sense. Why would veterans now be having

9 symptoms if they were exposed to a pesticide or a solvent

10 which basically has left their body since they came back


11 from the Gulf?

12 We have no toxicologic model to explain that

13 kind of problem. This is the only model that I know of

14 that begins to address that concern.


15 MAJOR KNOX: I was curious. Do you know if

16 these individuals who have multiple chemical

17 sensitivities -- do you find that they are also


18 immunosuppressed?

19 DR. TAYLOR: I didn't hear her question.

20 DR. MILLER: The question is, do people who

21 have these sensitivities also appear to be


22 immunosuppressed? There has been a very heterogeneous








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1 literature on this with some people claiming that there

2 are changes in T-cells or alterations in other immune

3 parameters.


4 Most of the parameters that have been looked at

5 are not terribly sensitive parameters and there are a lot

6 of other things that could be looked at -- responses to


7 particular -- let's say stimuli, you know, cell-mediated

8 immunity kinds of investigations that really have not been

9 done in this area.

10 So we have only scratched the surface in terms


11 of immunological etiologies. Let me just say that there

12 is very little research in this area as a whole. You

13 would be startled how few thousands of dollars have been

14 spent on this concept and it has been largely because


15 people have felt in the scientific community it was not a

16 hypothesis worthy of exploration, that it was just -- it

17 had to be psychiatric in nature.


18 This did not look like any known model for

19 disease. Therefore, this whole approach was dismissed.

20 And I think you could go a long way in saying that this is

21 something that needs to be examined. You certainly would


22 not be going out on a limb doing that because there have








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1 been multiple groups of scientists now who have looked

2 carefully at this issue and feel strongly that this needs

3 to be examined in a direct manner with challenge studies.


4 DR. LASHOF: Can you comment at all about how

5 the VA is handling the veterans who present? We have

6 heard a lot of unhappy people talk about the attitude of


7 the physicians and including Houston VA where you made the

8 point that it was a center that was asking these

9 questions.

10 Could you comment on that?


11 DR. MILLER: I was brought in as a consultant

12 on the first veteran that was seen in Houston. And they

13 realized that it was helpful to get exposure histories on

14 the veterans and talk about these concerns in the media


15 involving chemical sensitivity.

16 Most of the VAs do not have any way of getting

17 an exposure history. They do not have people trained in


18 environmental health and so that kind of data is not being

19 gathered on the veterans nor is there any discussion with

20 the veterans when they are there about possible risks,

21 things that we don't understand, like the things I talked


22 with you -- talked to you about today.








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1 Veterans are pretty much left to, you know, go

2 home and given a very good workout in terms of ruling out

3 conventional diagnoses. Then they struggle to try to seek


4 help from other doctors. Some go to the civilian sector

5 where, in certain cases, they will get a diagnosis of

6 chemical sensitivity.


7 And then they go back to the VA and ask the VA

8 what is wrong with them that they couldn't have diagnosed

9 this because to them, to the veteran, it fits the pattern

10 of illness that they are experiencing. So they feel very


11 angry at the VA frequently over this. And many of them

12 are doing very badly over time.

13 You should look at the people in the referral

14 centers who have been through there and see what has


15 happened to them over time. Most of them are not getting

16 better, is my understanding. And it is not because they

17 haven't received good medical care. It is because we


18 don't know how to treat it and what to do for it.

19 So there is a great deal more that could be

20 done to assure that we have good exposure histories taken

21 among the veterans. But to explore this question of


22 chemical sensitivity, the Department of Defense asked me a








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1 year or two ago for a questionnaire on chemical

2 sensitivity, which I provided to them, and they have been

3 administering as part of their comprehensive evaluation


4 program.

5 Thus far I have not seen data from that. I

6 know they have reams of data. But I think this is one


7 area that they have collected data in and that data could

8 be analyzed and looked at. Again, remember that people

9 may not be aware of their sensitivities until they avoid

10 them for a while and then are re-exposed.


11 And we ask patients to take a diary -- keep a

12 diary of any responses they have when they are exposed to

13 exposures and start to see if they are reproducible

14 responses. Don't jump to conclusions but see if there are


15 patterns to their responses.

16 DR. LASHOF: Isn't there a protocol that you

17 would like to suggest to the VA centers that they try to


18 use to get that kind of a history and then follow through

19 and have a series? That is one question. And second,

20 have you applied for funding under the DOD recent RFA to

21 pursue these issues?


22 DR. MILLER: The answer to both questions is








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1 yes. There have been a number of questionnaires that have

2 been developed that would help a lot in this process if

3 the VA felt it was okay to administer that kind of


4 questionnaire. Again, what the controversy is

5 in the scientific community over this subject, I think,

6 many veterans -- veteran physicians are worried about even


7 broaching this subject. They aren't comfortable dealing

8 with it. They don't understand it but with good

9 education, I think, the staff out there could be at least

10 gathering this kind of information and talking to


11 veterans, giving them some good pieces of information

12 about the controversies extant in the medical profession

13 currently.

14 In response to your second question, we


15 originally proposed to NIEHS that an environmental unit

16 needed to be constructed. This pre-dated the Gulf War, I

17 should say, just to study people from sick buildings and


18 people with pesticide exposures.

19 And NIEHS is very tuned into the need for this

20 kind of study but they aren't able to provide funding for

21 bricks and mortar to provide construction monies. It is


22 not in their mandate. And so they have been looking for a








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1 partner, perhaps, to maybe help with the construction of

2 such a facility.

3 And we have looked earnestly toward DOD, DVA


4 for such funding. In fact, we have a pending proposal

5 right now. This is the second time through for an

6 environmental unit. This would be done under the auspices


7 of an advisory group of well-known university scientists

8 in indoor air quality and psychiatry and other areas to

9 provide protocols that would hold up in the scientific

10 community.


11 But whoever does this, it needs to be done in

12 the right manner. And using exposure chambers -- putting

13 people in a small room and exposing them to a chemical

14 without removing them from exposures and getting them to


15 feel better, if they can first, does not make sense. You

16 have to have an environmental unit to do this work and it

17 is not inexpensive.


18 DR. LANDRIGAN: Let me ask one last question,

19 Dr. Miller, before we break. What treatment or what

20 regime of treatments are you recommending for folks whom

21 you are caring for? I know that there have been various


22 remedies proposed in the literature -- chelation, sauna,








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1 antibiotics, immunoglobulin, others. What do you use?

2 DR. MILLER: Well, I am not treating. Again, I

3 am not diagnosing and treating this problem. I serve as a


4 consultant. One thing I need to say to you, though, is to

5 make sure to separate these questions of controversial

6 therapies -- and there are many of them out there --


7 separate that question from the question, Does this exist

8 as a real clinical condition caused by chemical exposure?

9 And that question needs to be addressed before

10 we can answer what therapies are appropriate. In the


11 interim, a number of these groups that have met --

12 especially with ATSDR -- physicians who are dealing with

13 this problem in academic centers have felt that since we

14 don't know the mechanism, whether it is psychogenic or


15 toxicogenic, that we need to really avail patients of both

16 possibilities.

17 In other words, allow supportive psychotherapy


18 or any appropriate psychotherapy. This is a difficult

19 illness, even if it is due to chemicals exclusively. Very

20 difficult to cope with because people have trouble just in

21 their normal routine, living with their families and with


22 their jobs.








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1 And then on the other hand because avoidance

2 may be necessary for some of these individuals and these

3 highly-educated MCS patients tell us this -- that we allow


4 them to do trials of judicious avoidance, just as we would

5 with exposure in an occupational setting in suspicion that

6 asthma might be due to a chemical exposure -- removing


7 them from that exposure for a week or so and then having

8 them go back in a judicious manner and see if their

9 symptoms recur.

10 And we have had some veterans who have done


11 this and they have had resolution of their symptoms and

12 recurrence with re-exposure. A number of veterans have

13 reported feeling markedly better when they go away from --

14 let's say, go up to northern Wisconsin. And of course a


15 psychiatrist would say, Well, I would feel better, too, if

16 I went up to northern Wisconsin.

17 But then as they are driving back home in the


18 traffic exhaust, their symptoms begin to recur. So this

19 kind of observation -- keeping a careful diary of when

20 symptoms occur in relationship to particular exposures is

21 again something that the VAs could be having patients do,


22 if their physicians were trained to look at this








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1 possibility.

2 DR. LANDRIGAN: Okay. Thank you very much and

3 we thank all those who testified this morning.


4 DR. MILLER: Thank you.

5 DR. LANDRIGAN: We are going to break now. And

6 we are scheduled to resume promptly at 1:15. So just less


7 than an hour from now. Thanks.

8 (Whereupon, the hearing was recessed to

9 reconvene this same day at 1:15 p.m.).

10 A F T E R N O O N S E S S I O N


11

12 DR. LANDRIGAN: Let's get started, please. If

13 you will take your seats. So our first speaker this

14 afternoon is Dr. Nelson Gantz at Pennsylvania State


15 University College of Medicine. Dr. Gantz is going to

16 address us on the subject of chronic fatigue syndrome.

17 Dr. Gantz, could I ask you to keep your remarks


18 to 20, 25 minutes and that will give good, ample

19 opportunity for questions.

20 DR. GANTZ: Twenty minutes it will be.

21 DR. LANDRIGAN: Thank you, sir.


22 DR. GANTZ: And then if I go over five seconds,








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1 interrupt me.

2 DR. LANDRIGAN: We will give you a little rope

3 but if you could aim for that.


4 DR. GANTZ: My pleasure. I am certainly

5 delighted to be here to address the distinguished panel

6 and those victims in the audience.


7 I became involved in chronic fatigue syndrome

8 in the early 80s when I saw a number of patients that had

9 symptoms of sore throat, muscle aches, joint complaints --

10 symptoms suggesting infectious mononucleosis but the only


11 difference was, the patients failed to get better.

12 Instead of getting better in three months, four

13 months, the patients remained symptomatic for one year,

14 for two years, and longer and became involved in writing


15 the case definition that was published in the Annals of

16 Internal Medicine for chronic fatigue syndrome in 1988 and

17 then redefined. It was published in 1994.


18 And what I want to do in the next 19 minutes is

19 talk about chronic fatigue syndrome and the similarities

20 with the Persian Gulf War Syndrome. If one looks at --

21 and these are a 19th century lithograph of two women


22 complaining of marked fatigue but it could be two








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1 children, it could be two men.

2 Fatigue is a very, very common complaint and

3 the complaint, I am simply all worn out, is noted by about


4 20 to 25 percents of patients seeking medical care.

5 Unfortunately, we don't have any good laboratory tests to

6 define fatigue. Now, if one looks at -- and this is a


7 patient that is confused but it could be a healthcare

8 provider that is confused, with those complaints that I

9 mentioned -- muscle aches, joint complaints, problems with

10 concentration -- enters the healthcare system in a number


11 of doors, maybe through an internist initially.

12 Maybe he sees a family physician. Maybe he

13 presents to the emergency department. Multiple

14 complaints. And the patient is told, Everything is fine.


15 Maybe you need to see a neurologist because you are

16 talking about headaches and paresthesias.

17 And the neurologist says, Gee, the exam was


18 normal. You obviously need to see a psychiatrist. The

19 patient says, Well, gee, I was perfectly fine. Had a flu-

20 like illness and now I don't -- I have multiple symptoms.

21 Now, an example of marked fatigue, you know,


22 severe fatigue. We can see it but it is certainly hard








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1 because we don't have a laboratory test to define fatigue.

2 Chronic fatigue syndrome made the cover of Newsweek

3 magazine. It says, "A debilitating disease affecting


4 millions and the cause is still a mystery."

5 And we will talk about the prevalence of

6 chronic fatigue syndrome and the prevalence of how common


7 it is depends on the definition one uses to define the

8 entity. And we will talk about the cause of chronic

9 fatigue syndrome, what is known.

10 There are a number of unanswered questions.


11 One, does chronic fatigue syndrome even exist? Is there

12 such an entity? What is its cause? Is it a new or old

13 disease? How can you diagnose it? What is the

14 relationship between Epstein-Barr virus and chronic


15 fatigue syndrome because there were two papers published

16 in the Annals of Internal Medicine in 1987 suggesting that

17 Epstein-Barr virus was responsible for chronic fatigue


18 syndrome.

19 And in fact, subsequent research has shown that

20 this virus is not involved in this disorder. Is it

21 contagious and other effective treatments. Now, one can


22 look -- this was a paper published in 1869 in the Boston








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1 Medical and Surgical Journal which is a journal which

2 preceded New England Journal of Medicine.

3 It was a paper entitled, "Neurasthenia." And


4 neurasthenia, if you read the paper over, the symptoms

5 sound like chronic fatigue syndrome -- very, very similar

6 complaints. And these patients were treated. It was an


7 interventional study at the time.

8 I don't know how much informed consent they had

9 but they did this study. Two-thirds of the patients were

10 cured or greatly benefited and five had a slight benefit.


11 Five had no benefit. You know, maybe these two-thirds of

12 the patients said, You know, I don't want a second

13 treatment. You know, I feel better already.

14 But again, not a new disorder. Not a new


15 disorder. And you look at chronic fatigue syndrome, there

16 are a number of reports going back. Here there is the

17 paper in 1869 talking about nerve weakness. Atypical


18 polio reported in 1938. This was a group of student

19 nurses in Los Angeles that had muscle complaints,

20 paresthesias, headaches, marked symptomatology. It was

21 described as atypical polio.


22 Akureyri's disease, Icelandic disease --








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1 Akureyri is a city in Iceland, again, with similar

2 symptomatology. And one can look here -- rural free

3 disease, Lake Tahoe Illness. There continues to be


4 clusters and reports of fatiguing illnesses associated

5 with a number of complaints.

6 Recently, there was an outbreak in Pigeon,


7 Michigan, again, of a fatiguing illness with muscle aches

8 and joint complaints. So these continue to occur. So I

9 don't think we are seeing anything that is new. If one

10 looks at epidemic neuromyasthenia, there have been more


11 than 30 outbreaks since 1934. Some have as many as 1,000

12 cases. Tends to have a short incubation period and

13 affects -- two-thirds of the patients are female.

14 And we don't have an explanation for what is


15 causing epidemic neuromyasthenia. Now, if you look at

16 alternative diagnoses to the complaint, I am simply all

17 worn out, maybe we are talking about depression.


18 Depression or psychiatric illness is a label that patients

19 don't like having placed.

20 Patients clearly prefer having an infectious

21 type of disorder as opposed to having been told that I


22 have a psychiatric disease. But we don't know what the








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1 etiology of depression is. For all I know, depression may

2 have an infectious basis.

3 Chronic brucellosis. Chronic brucellosis was a


4 disorder that was popular in the Redbook magazine before

5 hypoglycemia became popular. Chronic candidiasis, the so-

6 called yeast connection. Yeast Connection relates that


7 overgrowth of yeast are responsible for multiple symptoms

8 and if you treat the yeast, then the symptoms improve.

9 Again, there is a Dr. Crook or a Dr. Crock who wrote a

10 book. Lists all symptoms known to mankind. Itchy teeth,


11 for example. You know, not a common complaint. And

12 again -- but there is no evidence that this entity exists.

13 Total allergy syndrome and fibromyalgia, which

14 you are going to hear shortly about which is very, very


15 similar to chronic fatigue syndrome, which overlaps. I

16 think you can look at chronic mononucleosis syndromes into

17 three categories.


18 One, prolonged recovery from acute infectious

19 mono. Most patients with infectious mono recover in about

20 a month. But some patients take two months, three months,

21 four months. I could ask anyone in the panel, has anyone


22 every had infectious mono? No one admits it. Good. You








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1 had it. How old were you?

2 MICHAEL KOWALOK: I was in first grade.

3 DR. GANTZ: First grade, so about six. So it


4 wasn't too long ago. Six or seven. You know, it is

5 interesting. Most people that have symptomatic disease

6 have disease -- symptomatic disease usually over 15 years


7 of age. But that was -- it is less common. How long did

8 it take you to get better?

9 MR. KOWALOK: It was about half a year.

10 DR. GANTZ: About half a year. You know, and


11 again, there was a study at West Point. Fifty percent of

12 cadets were better in two weeks and the other fifty

13 percent were better in two more weeks. They said, Either

14 you are better or you are out.


15 But again, there is a spectrum of getting

16 better. There is a disorder called chronic active EBV

17 infection where one has pancytopenia, hepatitis,


18 pneumonia -- again, markedly deranged abnormalities due to

19 Epstein-Barr virus. And then chronic fatigue syndrome.

20 Now, there are many causes for chronic

21 fatigue -- multiple causes -- so it is not a simple -- it


22 is an extensive differential diagnosis from psychiatric








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1 illnesses, from infection. Again, untreated thyroid

2 disease, certain medications can cause fatigue.

3 So there is a big list of disorders that may be


4 responsible for fatigue. And fatigue is clearly -- for

5 chronic fatigue syndrome, as you can see, is a diagnosis

6 of exclusion. This was the original case definition which


7 I supplied you with and this definition required the

8 presence of having at least six of eleven symptoms which I

9 will illustrate, plus two physical signs, or having eight

10 symptoms.


11 The diagnosis depends on having severe fatigue

12 not relieved by bed rest, so it is not just being tired.

13 This is not tiredness. And reduces average daily activity

14 less than 50 percent and it is not previously experienced.


15 Someone who was well, has some sort of illness or some

16 sort of stressful event and fails to get better.

17 Secondly, it is a diagnosis of exclusion since


18 there is not laboratory test for chronic fatigue syndrome,

19 unfortunately. Now, if you look at the symptoms and the

20 symptoms, again, are symptoms experienced by many patients

21 with Persian Gulf War Syndrome and, again, low-grade


22 fever, sore throat, painful lymph nodes, muscle weakness,








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1 muscle aches, fatigue after exercise.

2 So patients could tolerate going to the store.

3 Now they go to the store and wiped out for two or three


4 days. Headaches not previously experience,

5 neuropsychological complaints, problems with

6 concentration, trouble with memory, students going from


7 being an A-student to failing school, sleep disturbance,

8 waking up feeling tired, and the onset ought to be over a

9 short period of time rather than over 50 years.

10 That was the original definition. This was a


11 meeting held at the NIH where one said we ought to exclude

12 certain diseases because it is certainly hard to diagnose

13 chronic fatigue syndrome if someone has underlying

14 schizophrenia.


15 You obviously could have two illnesses. You

16 could have diabetes plus but since you don't have a

17 laboratory test for this entity, one tries to define a


18 better group of patients. Substance abuse is an example

19 and including fibromyalgia.

20 This is a new definition that was published in

21 '94. Similar to the previous definition but the new


22 definition talks about having the severe fatigue.








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1 Secondly, it is a diagnosis of exclusion. And instead of

2 requiring eight symptoms, one needs just to have four

3 symptoms and the four symptoms ought to occur within the


4 first six months because you wouldn't want to have, like,

5 a sore throat one year, five years later a muscle ache,

6 and then three years later a poor night's sleep.


7 And the symptoms again: impaired memory

8 concentration, sore throat, tender lymph nodes, muscle and

9 joint pain, unrefreshing sleep. This is a pretty Venn

10 diagram looking at chronic fatigue syndrome. And there is


11 clearly an overlap with underlying depression and

12 fibromyalgia.

13 This is fatigue in the community. And if one

14 fails to meet the four criteria for chronic fatigue


15 syndrome, then one is said to have idiopathic chronic

16 fatigue -- having the severe fatigue but only have two or

17 three other symptoms.


18 Here was a study from -- it is not limited --

19 chronic fatigue is not limited in this country. It occurs

20 throughout the world. This is a study from Australia

21 looking at a prevalence rate of about 40 cases per


22 100,000. There have been studies done in this country








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1 where the rates are 200 per 100,000.

2 Again, the prevalence of the disorder depends

3 on the criteria one uses to define the illness. And 42


4 percent of individuals are disabled, wiped out. If one

5 looks at laboratory tests, you can do a lot of laboratory

6 tests. A lot of laboratory testing has been done.


7 I think the hallmark of the disorder is having

8 a normal sedimentation rate of 1 or 2 -- normal sed rate.

9 I think these other laboratory tests really don't really

10 add anything to patient care other than utilize healthcare


11 dollars inappropriately.

12 You know, here again, a lot of testing has been

13 done with various cytokines showing abnormalities but, in

14 fact, the abnormalities don't necessarily -- aren't


15 necessarily meaningful at this point in time in the

16 illness. Here was a study published in the Journal of

17 Clinical Endocrinology looking at possibly endocrine


18 abnormalities with chronic fatigue syndrome. And there

19 may be some changes showing decreased basal plasma

20 cortisol levels and decreased ACTH response to

21 corticotropic releasing hormone.


22 So there may be some endocrine basis for this








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1 disorder. And there was a study that was just completed

2 at the NIH looking at low-dose hydrocortisone versus

3 placebo because hydrocortisone, if it is slightly


4 diminished, ought to help.

5 Here is a report that was published in JAMA

6 1995 looking at hypotension and chronic fatigue syndrome.


7 Patients having a tilt-table testing. When you have a

8 tilt-table, when you go upright, certain patients drop

9 their blood pressure. And in addition to dropping their

10 blood pressure, have many of the symptoms seen with


11 chronic fatigue syndrome.

12 This was a study reported. Many patients had

13 abnormal tilt-table tests and three-quarters of patients

14 improved with measures to increase their blood pressure.


15 Sounds exciting. Unfortunately, it is not a controlled

16 observation so you don't know. And that study is being

17 currently done at the NIH to look at that.


18 So that may be a factor. My sense, this is not

19 the total answer. We have had many patients with abnormal

20 tilt-table tests, treat them, and they still feel tired.

21 What causes chronic fatigue syndrome? I think the bottom


22 line is we don't have an etiologic agent.








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1 A lot of agents have been looked at. Many CVs

2 have been enhanced by looking at it and saying, It is not

3 this, It is not this, It is not this. Epstein-Barr virus,


4 numerous studies, probably doesn't have a causative role.

5 CMV, similarly. Human herpes virus VI. You

6 can show that it is replicating more in patients with this


7 disorder but probably not the agent. Enteroviruses. If

8 you are in England, certain enteroviruses have been seen

9 in muscle biopsies of patients with chronic fatigue

10 syndrome. More evidence is needed.


11 Retroviruses. There was one report suggesting

12 that it had a role. Never confirmed by the CDC. So we

13 don't know, 1996, what causes chronic fatigue syndrome.

14 My sense is chronic fatigue syndrome -- again, this is


15 hypothesis, not fact.

16 There are a number of predisposing factors,

17 maybe psychiatric illness. There is some evidence


18 supporting that. Maybe there are genetic factors and that

19 is being looked at with the current grant. Maybe there

20 are environmental factors as we heard earlier today.

21 Syndrome precipitants: infection or maybe


22 stress. I don't think stress is beneficial in life. And








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1 perpetuating factors: physical deconditioning, concurrent

2 psychiatric illness, misattribution of symptoms and maybe

3 the presence of cytokines.


4 What about therapy for chronic fatigue

5 syndrome? And this is a patient that came to see me and

6 she was taking these different agents: Ageless Beauty --


7 I kept that.

8 Two minutes is fine. Let me just focus on

9 managing a patient with chronic fatigue syndrome. I think

10 it is important to want to establish a diagnosis. I think


11 it is disturbing to patients to be told that they have

12 nothing when they have multiple symptoms. I think that is

13 of importance.

14 Secondly, emotional support is critical.


15 Thirdly, continue to rule out other medical problems.

16 Avoid exotic, untested remedies. I saw one patient who

17 had multiple symptoms from the Persian Gulf War -- had


18 malignant melanoma. Now, I don't think you can implicate

19 malignant melanoma as coming from the Persian Gulf War.

20 Avoid exotic, untested remedies. Symptomatic

21 treatment is critical for this illness. Treating the


22 symptoms. Graded exercise program and regular follow-up.








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1 I think there are a number of problems in interpreting

2 chronic fatigue syndrome studies.

3 Heterogeneous patient populations make it


4 difficult to distinguish chronic fatigue from psychiatric

5 disorders. Lack of an objective diagnostic marker, few

6 double-blind placebo-controlled trials, absence of


7 objective response markers, and newly-diagnosed cases may

8 differ from long-standing cases.

9 So it is not an easy entity to study. Therapy,

10 I said, is symptomatic. And particularly treating


11 depression with antidepressants. And because someone is

12 given an antidepressant and feels better, you can't

13 conclude that the underlying problem was necessarily

14 depression.


15 If one felt lousy, I think everyone would have

16 a secondary depression. I think if everyone on the panel

17 couldn't concentrate, couldn't remember, you would be


18 depressed. I think that is not surprising. Treating the

19 sleep disorder, I think, makes good sense. Poor,

20 unrefreshing sleep -- you feel lousy. You know, if you

21 all were up at 4:00 in the morning, you would be wiped


22 out.








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1 So symptomatic therapy is critical. Treating

2 the muscle and joint aches as well. I am going to skip

3 that and show you one more slide and then we will take


4 questions. So I think in summary, I think chronic fatigue

5 is real. Etiology is unknown. It remains a diagnosis of

6 exclusion. Symptomatic therapy,


7 reassurance and support, and regular follow-up. We are

8 sort of geared in medicine to looking at the laboratory

9 tests. If the tests are normal, we say the patient is

10 fine. It says, I didn't say you feel good, I said the


11 laboratory reports do.

12 That is how we sort of practice. And it says,

13 Doc, can you give me something to make me feel a bit more

14 energetic? And it says, Good news. You don't have


15 chronic fatigue syndrome. You are hibernating.

16 Let me stop and take questions at this point.

17 DR. LANDRIGAN: Thank you very much. So Dr.


18 Gantz' presentation is open from the panel for questions.

19 DR. TAYLOR: Dr. Gantz, of the patients that

20 you see, how many of them actually return -- those

21 diagnosed with chronic fatigue syndrome -- with treatment,


22 are they able to work?








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1 DR. GANTZ: Well, if you look at -- and there

2 have been a lot of studies done. There have been studies

3 done in children with chronic fatigue syndrome. And in


4 children, the majority in one report seemed to get better.

5 Studies in adults, they vary.

6 Some studies show that about 80 percent don't


7 get better. Have a waxing and waning illness. About 20

8 percent totally recover. I think with therapy many

9 patients can feel better. In other words, sleeping

10 better, having more energy. Not necessarily cured.


11 DR. TAYLOR: For instance, I do -- I am

12 familiar with -- I also have a personal friend who has --

13 from the general population -- who has the illness. And I

14 was just concerned about, she has not been able to return


15 to her -- resume her normal way of life since that.

16 DR. GANTZ: Well, there are a number of

17 strategies, as I mentioned, that can be used to get


18 someone to feel better, not necessarily cured. And I

19 think it is a real entity. It is so difficult because in

20 medicine, if you see someone bleeding, coming in with

21 crutches, you say, That person is ill.


22 And if you see someone who looks, "normal," you








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1 say the person must be fine. And I think it is more to

2 that. Any other questions?

3 DR. LASHOF: Have you treated many Gulf War


4 veterans?

5 DR. GANTZ: Not many Gulf War veterans. No.

6 DR. LASHOF: Well, then you probably don't know


7 but have you talked with others? Can you make any --

8 DR. GANTZ: I have certainly talked with other

9 individuals who have, in looking at the symptomatology,

10 very, very similar symptoms as chronic fatigue syndrome.


11 DR. LASHOF: Are there any characteristics that

12 you think are really different in the Gulf War than

13 chronic fatigue, where they really differ?

14 DR. GANTZ: Well, I think it is difficult to --


15 that is a good question. But I think the key factor is,

16 here, is you have got to look at what the patients have.

17 And I think we are sort of lumping together, looking for


18 one syndrome to explain everything. And I think that is

19 probably a misclassification occurring and I think that is

20 one of the problems.

21 And there is obviously probably a group of Gulf


22 War Syndrome patients that have some precipitating factor.








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1 And instead of getting better, go on to have persistent

2 symptoms. And there is obviously other Gulf War veterans

3 that probably have -- maybe some of them had


4 leishmaniasis.

5 DR. TAYLOR: What about work history or

6 environment exposures? I mean, is there --


7 DR. GANTZ: Well, it is a good question. There

8 was a recent paper in the Medical Journal of Australia

9 looking at hydrocarbon levels. And they were elevated in

10 patients with chronic fatigue syndrome compared with


11 controls.

12 Again, maybe that is a clue I think you think

13 to have look at carefully. And do the necessarily

14 elevated levels explain the symptoms? So it is one thing


15 seeing an abnormality. The other thing, is it true true

16 related or true true unrelated?

17 And I think it is easy, as everyone knows on


18 the panel -- certainly knowledgeable -- it is easy to do a

19 bad research. Not difficult. It is hard to get -- do

20 good science. And it is slow and costly and for those

21 sitting in the audience, the pace is too slow.


22 The pace is too slow but on the other hand, it








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1 takes a while.

2 DR. LASHOF: Do you see much relationship

3 between multiple chemical sensitivity and chronic fatigue


4 syndrome or do you think they are completely different

5 elements?

6 DR. GANTZ: I think the cluster of symptoms


7 that may occur from multiple chemical sensitivities, I

8 think may be very, very similar. And I think there may

9 be -- that may be a precipitating factor. I think what is

10 lacking with multiple chemical sensitivities, as the


11 previous speaker said, is any data.

12 We are looking at hypotheses. Hypotheses that

13 look, certainly, exciting but you need to do carefully

14 controlled studies to see. And I think they may be a


15 factor. Who knows? Who knows? Listen, Adam lived to

16 980. And then we got healthcare and no one lives that

17 long any more, right? There weren't any chemicals around


18 then.

19 DR. LANDRIGAN: Only naturally occurring ones.

20 DR. GANTZ: What was that?

21 DR. LANDRIGAN: Only naturally occurring ones.


22 DR. GANTZ: Only natural ones at the time. Any








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1 other questions?

2 DR. LANDRIGAN: Okay. Thank you very much, Dr.

3 Gantz.


4 DR. GANTZ: My pleasure.

5 DR. LANDRIGAN: It was very good. Now, next we

6 will hear from Dr. Daniel Clauw from Georgetown University


7 Medical Center who will speak on fibromyalgia and its

8 relationship to other syndromes, including multiple

9 chemical sensitivity and chronic fatigue. Dr. Clauw.

10 DR. CLAUW: Thank you. I would like to thank


11 the committee and the organizers for inviting me to speak

12 today. And I would like to thank the patients and their

13 families and their advocates for the moving testimonials

14 this morning.


15 If it is any consolation, there are probably

16 hundreds of thousands, if not millions, of people in the

17 United States who have symptoms very similar to what were


18 described today and the same kinds of difficulties dealing

19 with bureaucrats who don't believe that the individuals

20 are really ill and who have very real disabilities, the

21 same types of frustration with mainstream healthcare in


22 our inability to make these people better.








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1 And once again, these occur when I go and talk

2 to support groups of chronic fatigue syndrome patients or

3 fibromyalgia patients. You hear these stories over and


4 over again.

5 I was given the charge today of talking about

6 four general topics in fibromyalgia. First, the


7 definition. Secondly, the relationship with other

8 disorders. Thirdly, the pathogenesis or cause. And in

9 that regard, all we have are hypotheses. And then

10 finally, treatment of fibromyalgia.


11 I will start with talking about the definition.

12 You have heard already from Dr. Gantz the definition for

13 chronic fatigue syndrome, which is listed on the right.

14 But I put it here for illustration to show how similar


15 these illnesses are.

16 On the left is the diagnosis of fibromyalgia

17 and it is a very similar diagnostic criteria. It is first


18 that the individual has a history of widespread or diffuse

19 musculoskeletal pain. And for purposes of studies, that

20 is defined as having pain in all four quadrants of the

21 body and pain involving the axial skeleton.


22 And also that the individual has the presence








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1 of 11 of 18 tender points or trigger points. And I will

2 talk more in just a second about the notion of tender

3 points or trigger points. And you can see here with the


4 CFS definition put side-by-side that there is -- that

5 chronic fatigue syndrome, on the other hand, is defined

6 largely on the basis of debilitating fatigue but we know,


7 for example, that about 50 or 60 percent of people who

8 have fibromyalgia have chronic fatigue syndrome and vice

9 versa. There is a tremendous overlap between these

10 diagnoses.


11 And this what I have labeled the old paradigm

12 of the way we used to think of fibromyalgia. That is, the

13 woman here in purple with red areas indicating the tender

14 points or trigger points -- red meaning pain. But what we


15 have come to recognize is that there is a lot of problems

16 with this definition.

17 One is that we now know that the individual is


18 all red. That is, that individuals with fibromyalgia have

19 pain throughout their entire body and they don't just hurt

20 in areas that have been designated as tender points or

21 trigger points.


22 The areas of tender points are areas where








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1 everyone is more tender, whether you are looking at the

2 general population or people that have a specific disease.

3 And so if you walk up behind someone and push in their


4 mid-trapezius region, which is a tender point, and you

5 apply enough pressure, most people will feel tenderness.

6 And as matter of fact, when epidemiologic


7 studies have been done in the general population, the

8 average number of tender points that a normal individual

9 who doesn't have fibromyalgia has is three point seven.

10 So four tender points is normal.


11 This notion that magically when you get to

12 eleven tender points, you have a disease that we call

13 fibromyalgia is somewhat problematic, especially given the

14 fact that we now recognize that people don't only hurt in


15 these areas of tender points.

16 There is a couple of other problems with this

17 definition. One is that it depends on the state of the


18 individual and that is that we know that in any pain

19 conditions, pain vacillates widely from day to day, week

20 to week, or month to month.

21 And this notion that at the time that you get


22 your appointment that you waited ten months for to see the








189


1 rheumatologist at the VA, that when you go in at two

2 o'clock, if you have ten tender points you don't have

3 fibromyalgia and if you have eleven, you do, is sort of


4 ludicrous given everything that we know about pain and

5 everything that we know about how the symptoms wax and

6 wane in these kinds of conditions.


7 And then finally, one of the big problems with

8 this definition is that it depends a great deal on the

9 observer. One of the things that I see very commonly as I

10 bring residents or fellows through to teach them how to do


11 a tender point exam is first, that they are not pushing in

12 the right spot and second, that they are not pushing hard

13 enough.

14 So if you don't push in the right spot and you


15 don't put four kilograms of pressure, which is a lot of

16 pressure -- it is nine pounds of pressure over your

17 digit -- you won't detect tender points when the person


18 really has tender points.

19 So we have this definition that works very well

20 when you are doing it -- looking at a research setting

21 either in an epidemiologic setting or a clinical research


22 setting and you are trying to define a more homogeneous








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1 group of patients. But it falls apart when you try to use

2 it in clinical practice. In clinical practice, there is a

3 lot of problems with this definition.


4 And the other thing that we have learned about

5 fibromyalgia is not only is the woman all red -- and I say

6 woman only because that all of these illnesses occur more


7 commonly in females than in males but they by no means

8 exclusively occur in women.

9 But that when you identify a group of

10 individuals with either chronic fatigue syndrome or


11 fibromyalgia, that there is a number of other symptoms or

12 syndromes that I call non-defining features of

13 fibromyalgia or non-defining syndromes including things

14 that many people have talked about already today but that


15 occur in anywhere from 40 to 70 or 80 percent of

16 individuals with either fibromyalgia or chronic fatigue

17 syndrome.


18 And I will just go really quickly through

19 these. Tension and migraine headaches, affective

20 disorders such as anxiety and depression,

21 temporomandibular joint or TMJ syndrome, constitutional


22 symptoms such as weight fluctuations, night sweats,








191


1 weakness, and sleep disturbances, irritable bowel

2 syndrome, non-dermatomal paresthesias. Non-dermatomal

3 paresthesias mean the people have numbness and tingling


4 but it doesn't follow the pattern of a single nerve route.

5 Going back up to the top right. Cognitive

6 problems -- very severe in some people with chronic


7 fatigue syndrome and fibromyalgia -- in many cases, the

8 most debilitating feature of the illness. Ocular

9 complaints: dry eyes, dry mouth, problems with focusing.

10 Balance complaints, multiple chemical


11 sensitivity, which was also -- already discussed.

12 "Allergic symptoms." We are not sure if these are true

13 allergies or if people just have painful eyes, dry eyes,

14 runny nose, and other types of allergic symptoms. But it


15 goes on and on.

16 And once again, studies have been done in both

17 chronic fatigue syndrome and fibromyalgia showing that the


18 spectrum is much wider than we originally anticipated.

19 Fibromyalgia is not a musculoskeletal disease. Chronic

20 fatigue syndrome is not a fatigue syndrome per se because

21 individuals have syndromes and symptoms in other organ


22 systems.








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1 I apologize because of the lighting. You can't

2 probably read the top but this is a Venn diagram showing

3 on the top right fibromyalgia which we know affects about


4 1 to 2 percent of the population. Of all of these

5 studies, it is the best-studied as far as prevalent

6 studies in the general population.


7 And the studies have been done in four

8 different countries and all come out with about 1 to 2

9 percent of the population being afflicted with

10 fibromyalgia. Chronic fatigue syndrome affects less than


11 1 percent of the population, using the old criteria but

12 using the new criteria, which Dr. Gantz just went over,

13 probably is closer to 1 percent of the population and I

14 already talked about how that was defined.


15 Somatoform disorders. I have a problem with

16 the whole notion of somatoform disorders and I argue

17 constantly with my colleagues who are psychiatrists and


18 with people who are psychiatrists that aren't my

19 colleagues because psychiatrists have this notion that the

20 presence of multiple physically unexplained symptoms gives

21 you the label of somatoform disorders or somatization


22 disorder.








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1 The problem is, is that as we come further and

2 further in research, these aren't physically unexplained

3 symptoms, that there are a variety of objective


4 abnormalities that we can identify in people with

5 fibromyalgia and chronic fatigue syndrome that are either

6 wholly responsible for these symptoms or are largely


7 responsible for these symptoms.

8 So the notion that this is a psychiatric

9 disorder, I have a lot of problems with. But giving the

10 term somatoform disorders, I probably have even more of a


11 problem with because then it sort of allows someone to ask

12 the person what age they were toilet-trained at and if

13 they were toilet-trained too early, then all of a sudden

14 that is cause of all their illnesses and that is the


15 reason that they got an illness after going to the Gulf

16 War, which doesn't make any sense at all.

17 And then finally we have the Persian Gulf


18 Syndrome which, unlike all these other syndromes, is not

19 defined by clinical features. It is defined by

20 participation in the Gulf War and by having unexplained

21 symptoms after coming back from the Gulf War.


22 I would contend that these aren't really








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1 unexplained symptoms given what we know about chronic

2 fatigue syndrome, fibromyalgia, and all of these other

3 related entities. I think we don't yet know what


4 triggered these symptoms and whether there could have been

5 toxins or other types of exposures that triggered these

6 symptoms.


7 What I will try to present to you is a

8 hypothesis or a mechanism by which people could have

9 developed these illnesses without any toxin exposure or

10 without any kind of environment exposure because we know


11 that that can occur in idiopathic chronic fatigue syndrome

12 and fibromyalgia.

13 And so this just goes through some of the

14 reasons for the overlap which I just went over. And this,


15 which no one in the room except me, probably, can read, is

16 a diagram or a chart showing the clinical features of all

17 these entities -- Persian Gulf Syndrome, somatization


18 disorders, fibromyalgia, chronic fatigue syndrome, and

19 multiple chemical sensitivity.

20 There are only a couple of things here that I

21 want to point out. One is that when you add up the


22 defining features of each of these illnesses and the








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1 nondefining features -- the other features that occur in

2 individuals with these illnesses -- these illnesses become

3 almost inseparable.


4 It would be almost impossible to say that

5 someone -- that somatization disorder is a discrete group

6 from fibromyalgia. In fact, it would be impossible


7 because there is so much overlap between these groups of

8 patients. The other is that from a

9 demographic standpoint, all of these illnesses occur more

10 commonly in women. We don't understand. From an


11 epidemiologic standpoint, they affect around 1 to 4

12 percent of the population, depending on, as Dr. Gantz

13 says, the exact definition that you use. So these are not

14 uncommon entities.


15 And then finally the proposed triggers for each

16 of these are slightly different but what comes up over and

17 over again are different types of biological stressors.


18 And I know that the word stress is a bad word to use when

19 you are talking to groups of patients about fibromyalgia

20 or chronic fatigue syndrome or about the Persian Gulf

21 Syndrome.


22 But what I am talking about is biological








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1 stress, not the sort of lay connotation for stress. And

2 what we know is that whether you are talking about rats or

3 mice or humans is that biological stress has a profound


4 physiologic effect and that, in particular, inescapable or

5 unavoidable biological stress has a profound physiologic

6 effect.


7 And what I am going to go through is talk about

8 how abnormalities and how someone responds to different

9 types of immune, physical, emotional, or perhaps toxic

10 stressors may be a trigger or, if you will, the cause for


11 developing this spectrum of illnesses.

12 Just to spend a little bit of time here talking

13 about people with fibromyalgia and chronic fatigue

14 syndrome and the notion that Dr. Gantz alluded to is that


15 we -- many researchers, including myself, feel that there

16 is a genetic or a familial predisposition to develop not

17 only fibromyalgia or chronic fatigue syndrome but it is


18 very well-established, for example, that migraines or

19 irritable bowel syndrome have a genetic or a familial

20 predisposition.

21 So some of the allied conditions that have been


22 better-studied clearly have a familial or a genetic








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1 predisposition. And when you see individuals with chronic

2 fatigue syndrome or fibromyalgia in clinic, you see them

3 at the end when they finally develop a systemic disorder


4 that we call CFS or fibromyalgia.

5 But when you do a careful history, what you not

6 uncommonly find is that many of those illnesses -- the


7 syndromes or symptoms that I showed on the diagram of the

8 woman in red with all the things going around it -- that

9 earlier in their lives, that they have experienced many of

10 these different kinds of symptoms and syndromes, all of


11 which likely might have a common pathogenesis or common

12 pathogenic mechanisms.

13 There may be common pathogenic mechanisms that

14 lead to migraine headaches, irritable bowel syndrome,


15 affective disorder such as depression or anxiety, and the

16 systemic illnesses that we call fibromyalgia or chronic

17 fatigue syndrome.


18 So even though we sometimes leave people with

19 the notion that their illness started at a certain point

20 in time because that is when their most severe symptoms

21 started, it is rare that when you go back in the life of


22 an individual that ends up developing chronic fatigue








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1 syndrome or fibromyalgia, that you don't find a personal

2 history or a strong family history of these other kinds of

3 illnesses which I was speaking about.


4 These are some of the hypotheses that have been

5 proposed regarding the pathogenesis of fibromyalgia as

6 well as related conditions. Because people with


7 fibromyalgia hurt in their muscles and because we had this

8 notion until recently that it was their muscles that were

9 the problem, we started by looking at whether there were

10 abnormalities in the skeletal muscle that were causing the


11 pain in the skeletal muscle.

12 And most of the people in the fibromyalgia

13 community have come to the conclusion that there is

14 nothing wrong with the skeletal muscle in people with


15 fibromyalgia for a number of reasons, not the least of

16 which is that we have learned that people hurt all over.

17 If you push on the thumbnail of an individual


18 with fibromyalgia, they have much more pain in their

19 thumbnail or their forehead than if you pushed on someone

20 who doesn't have fibromyalgia or chronic fatigue syndrome.

21 Obviously, there is not muscle in that region and so it


22 would be difficult to postulate that an abnormality in








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1 muscle was causing this problem.

2 Others have and still contend that fibromyalgia

3 and chronic fatigue syndrome are primary psychiatric


4 disorders. Once again, I could talk an hour on this whole

5 topic. There is a ton of data on this topic. But in

6 general, here is a couple of things that we know about the


7 relationship between psychiatric disorders and CFS or

8 fibromyalgia.

9 One is that only about a third or 40 percent of

10 people with chronic fatigue syndrome or fibromyalgia have


11 any identifiable psychiatric disorder, if you don't count

12 somatoform disorders -- if you don't count that sort of

13 wastebasket term that allows a psychiatrist to label

14 someone as having a psychiatric disorder when they just


15 have physical complaints.

16 So if you take out somatoform disorders, there

17 is only about a third or 40 percent of individuals with


18 any of these illnesses that have a psychiatric disorder.

19 So what you then have to do is figure out what is causing

20 the fibromyalgia in the other 60 percent. If only a third

21 or 40 percent have any identifiable psychiatric disorder


22 and the other 60 percent have the exact same symptoms, it








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1 doesn't make sense that the cause is a psychiatric

2 disorder.

3 The other problem is that the psychiatric


4 disorder usually comes after the chronic fatigue syndrome

5 or fibromyalgia. Not always, but in most cases you find

6 that the individual has fatigue, has pain, goes to the


7 doctor and they can't be helped because of these

8 complaints, and then develop the depression or the anxiety

9 or some of the things that result.

10 And so the notion that these are primary


11 psychiatric disorders -- the data supporting that is not

12 very strong. Dr. Gantz mentioned the fact that this may

13 be an infectious or an immune disorder and I will talk

14 about that in a minute and try to -- my own feeling is


15 that this is not an infectious disorder and that the

16 abnormalities that we see in the immune system are

17 epiphenomena. That is, they occur as a result of the


18 disease rather than being the cause of the disease. But

19 that is my theory. There are very credible researchers

20 who would counter that theory.

21 And what I think and what many people have come


22 to feel is the cause of fibromyalgia and, to a lesser








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1 extent, some of these other conditions such as chronic

2 fatigue syndrome, are central mechanisms -- mechanisms

3 involving the brain and the spinal cord that are involved.


4 The phenomena suggesting an infectious cause

5 for CFS, if you look down the left, are the data that

6 support an infectious cause of chronic fatigue syndrome.


7 In many cases, there is acute onset of flu-like symptoms

8 that lead to the development of chronic fatigue syndrome.

9 The problem with that is that people develop

10 the exact same symptoms of either fibromyalgia or chronic


11 fatigue syndrome after being exposed to physical trauma

12 such as motor vehicle accidents or being exposed to

13 emotional trauma. And so the notion -- I feel that

14 infections very well may trigger fibromyalgia or chronic


15 fatigue syndrome but the data supporting that a continued

16 infection is the cause for chronic fatigue syndrome or

17 fibromyalgia, in most cases, is really lacking and is


18 quite minimal.

19 The notion that CFS has been known to occur in

20 clusters is used as evidence suggesting an infectious

21 cause. But once again, the most recent study done by the


22 CDC which I think Dr. Gantz was referring to -- I don't








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1 know the name of the town but the small town in Michigan.

2 When they looked at this town, sure enough, the

3 reports were accurate that there was a cluster of chronic


4 fatigue syndrome in this town and when they looked, they

5 found that 1 percent of the -- 1 to 2 percent of the

6 individuals who lived in this town in Michigan had chronic


7 fatigue syndrome.

8 But the CDC, being good scientists, went in and

9 did the same study in a controlled town about 80 miles

10 away in Michigan and lo and behold, they found that 1 to 2


11 percent of the individuals in this town that had none of

12 the same environmental exposures, they had none of the

13 same risk factors for developing chronic fatigue

14 syndrome -- the rate was exactly the same. It was 1 to 2


15 percent.

16 So what you see is that when you have an

17 illness like this that may be present and unrecognized in


18 the general population, you can very easily get the

19 appearance of clusters or the appearance of epidemics

20 because of publicity, because of the fact that people

21 start talking about it and they say, Well, yes, I have


22 those symptoms, too.








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1 It is not that the people are malingering or

2 that they are making up the symptoms. They very -- they

3 do have these symptoms and the symptoms are very real. It


4 is just that it is not until you do careful epidemiologic

5 studies are you able to sort out a true epidemic from what

6 this -- what I would term a pseudo-epidemic.


7 And then finally the changes in immune function

8 which has been noted in chronic fatigue syndrome and which

9 have been used as evidence for this being a viral or an

10 immune problem. These same changes occur in a variety of


11 different stressful conditions.

12 They are very nonspecific. They occur in

13 spouses of Alzheimer's patients. They occur in

14 individuals released from desert training episodes or


15 prisoner-of-war camps. They occur in students taking

16 final exams. And so the low natural killer cell function,

17 the slight changes in T-cell function can occur in many


18 different settings that aren't accompanied by chronic

19 fatigue or chronic pain. And thus the data supporting the

20 fact that these are causal really weakens when you look at

21 that evidence.


22 This is our hypothesis and any number of








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1 individuals'. This is not something that I was the one to

2 develop. There is a number of individuals at the NIH that

3 were probably the first to come up with this hypothesis.


4 And that is that the human stress response, which consists

5 of the autonomic nervous system, the hypothalamic-

6 pituitary axes, and what are called descending


7 antinociceptive pathways. These are pathways that begin

8 in the brain, go down the spinal cord, and are responsible

9 for inhibiting the upward transmission of pain.

10 The abnormalities in a number of these


11 different areas may be responsible for leading to the

12 symptoms that we see in chronic fatigue syndrome or in

13 illnesses such as migraine headaches or irritable bowel

14 syndrome. I am not going to spend any time on this. It


15 is very busy and, once again, this is a lecture in and of

16 itself -- the biology of the stress response.

17 I just wanted you to focus on the top left. It


18 says the human stress response is stimulated by acute

19 stressors such as physical or emotional input when we

20 perceive it by our eyes or by our emotions. It can be

21 stimulated by a nerve activation and it can be stimulated


22 by certain types of neuromodulators such as serotonin,








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1 vasopressin, or acetylcholine.

2 And on the other hand, it is inhibited by a

3 number of different things. And this is a biological


4 stress response that I am talking about, that there is a

5 lot of data supporting the fact that this is abnormal in

6 individuals with chronic fatigue syndrome and


7 fibromyalgia.

8 We don't know exactly why it becomes abnormal

9 but we do know that the physiologic consequences of it

10 becoming abnormal are very similar to the symptoms that we


11 see in chronic fatigue syndrome and fibromyalgia. And so

12 this is possibly the mechanism of the pathogenesis of

13 Persian Gulf Syndrome.

14 An individual is deployed to the Gulf War.


15 They may or may not have a genetic predisposition to

16 develop this spectrum of illness. They are exposed to

17 numerous stressors. Once again, it is conceivable that


18 toxins are one of these types of stressors although that

19 has not really been established, that any toxins that I am

20 aware of directly stimulate the human stress response.

21 We know that both physical stressors and


22 emotional stressors were prevalent in the Gulf War. And








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1 then what happened is, when these individuals have the

2 illness, they have blunting of the stress response

3 characterized by abnormalities in the autonomic nervous


4 system, abnormalities of diffuse increased nociception, or

5 increased pain throughout their entire body, a number of

6 different hormonal abnormalities that occur, all of which


7 may contribute to the symptomatology that we see in

8 chronic fatigue syndrome and fibromyalgia as well as in

9 the Persian Gulf Syndrome.

10 And then finally, just talking about treatment


11 of fibromyalgia and related conditions. The main stage of

12 treatments are low doses of tricyclic compounds, tricyclic

13 compounds being antidepressant by design but the dosages

14 that we use in fibromyalgia and chronic fatigue syndrome


15 are nowhere near the dosages that are effective as

16 antidepressants.

17 And when you give these drugs, you have to be


18 very careful about how you give these drugs. You have to

19 start at a very low dose and go up very slowly on the dose

20 or else people are intolerant of these drugs because of

21 the general chemical hypersensitivity that individuals


22 with chronic fatigue syndrome and fibromyalgia have.








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1 I do mainly tertiary care of fibromyalgia. I

2 get people that other rheumatologists or other people

3 haven't been able to make better. And so everyone that I


4 get with fibromyalgia has already been on both Elavil and

5 Flexeril, which are amitriptyline and cyclobenzaprine.

6 And the patients come in to me and they say


7 these drugs didn't help. If you retry the drugs, you

8 start at a very low dose. You very slowly escalate the

9 dose. In many cases, you find that these drugs are very

10 beneficial. A lot of it has to do with knowing how to use


11 these medications.

12 Aerobic exercise, in my view, is the single

13 most beneficial therapy for people with chronic fatigue

14 syndrome or fibromyalgia. The trick is getting people to


15 feel well enough that they can do their aerobic exercise.

16 And in that instance, what we have to do is use

17 medications to make their symptoms better so that they can


18 then tolerate aerobic exercise programs.

19 What I always say when I give talks to either

20 support groups or physicians that if I was stranded on a

21 desert island with 100 fibromyalgia or CFS patients, which


22 most physicians would view as sort of a scary proposition,








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1 and all I had is one modality, it would be aerobic

2 exercise.

3 I am firmly convinced that there is something


4 about aerobic exercise that is tremendously beneficial.

5 And on the other hand, there is something about making

6 people stop a regular aerobic exercise which have occurred


7 as part of their deployment to the Gulf War that may be

8 very harmful.

9 It may be that stopping regular aerobic

10 exercise -- people that were exercising five miles a day


11 and wouldn't miss it and stop doing regular aerobic

12 exercise because of some of the conditions involved in the

13 Gulf War -- that that in some way could have precipitated

14 this spectrum of illness.


15 And then finally, other more anecdotal types of

16 treatment. Other antidepressants such as serotonin

17 reuptake inhibitors, newer drugs, analgesics or, as Dr.


18 Gantz was referring to, the treatment of specific

19 syndromes -- or, symptoms such as insomnia, neurally-

20 mediated hypotension, multiple chemical sensitivity.

21 When individuals have these other syndromes,


22 you can address multiple chemical sensitivity by








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1 avoidance. You can address neurally-mediated hypotension

2 by giving low doses of beta blockers or Florinef or other

3 drugs that will raise the blood pressure.


4 But the more global approach of giving low

5 doses of tricyclics and using aerobic exercise is more

6 globally beneficial in leading to an improvement in all


7 symptoms in individuals with these illnesses.

8 So in summary, fibromyalgia is not a discrete

9 entity. There is considerable overlap between this

10 disorder and a number of other systemic and organ-specific


11 disorders that fall within the spectrum of illness. The

12 unexplained symptoms that are present in many Gulf War

13 veterans are all very common in fibromyalgia and related

14 disorders.


15 There are plausible pathogenic mechanisms for

16 the development of these symptoms other than exposure to

17 environmental agents. And don't get me wrong. I am not


18 by any means saying that that didn't play a role or that

19 couldn't play a role. I am just saying that it doesn't

20 have to have played a role in the development of illness.

21 And then finally that there are effective


22 treatments for fibromyalgia and related conditions that








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1 have not been studied in individuals with unexplained

2 illnesses associated with the Gulf War. And I will stop

3 there and take any questions.


4 DR. LANDRIGAN: Thank you very much, Dr. Clauw.

5 Questions from the panel?

6 DR. LASHOF: Can I draw your attention to your


7 chart on epidemiology? In that chart, you suggest that

8 chronic fatigue syndrome is 1 percent of the population

9 and fibromyalgia is 2 to 4 percent. And you are

10 considering these as separate entities, I assume, so that


11 one could add it and say, We have 3 to 5 percent.

12 If somatization disorder occurs in another 4

13 percent, are we really talking that among those three,

14 somatization, fibromyalgia, and chronic fatigue would


15 occur in 8 to 9 percent of the population?

16 DR. CLAUW: No. It is probably more like 1 to

17 4 percent because if you look at the Venn diagram, what


18 you see is that the highest prevalence is somatoform

19 disorders, which is 4 percent. And that -- and almost

20 everyone that has either fibromyalgia or chronic fatigue

21 syndrome would likewise meet criteria for a somatoform


22 disorder.








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1 Most people who have either chronic fatigue

2 syndrome or fibromyalgia meet criteria for the other

3 disorder as well. So no, it doesn't -- it is not additive


4 because there is so much overlap. The total percentage,

5 though, in the population is probably in the range of 1 to

6 4 percent and there are good data to back that up,


7 particularly in fibromyalgia and in somatoform disorders.

8 Like I said, the new CFS criteria have not been

9 tested in population-based studies so I am using the 1

10 percent figure as a rough estimate only because almost


11 everyone who has fibromyalgia meets those criteria.

12 DR. LASHOF: We would then need to see if it is

13 generally 1 to 4 percent of the total population for us to

14 show that there is a Gulf War illness -- Persian Gulf War


15 illness, we would have to see it in more than 4 percent of

16 the Gulf War veterans or it could be coincidental and they

17 could have --


18 DR. CLAUW: Right. You could be just picking

19 up the background rate. But my reading of the literature

20 and the studies that have been done suggest that it

21 exceeds that rate. And I -- once again, my personal


22 opinion is that there isn't any doubt that there are








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1 individuals who weren't ill when they went. They were ill

2 when they came back. And that these types of symptoms are

3 the symptoms that we see commonly in fibromyalgia and


4 chronic fatigue syndrome.

5 DR. LASHOF: But I guess the question is

6 whether there is any way -- what kind of triggers and what


7 kind of evidence one needs to look for to be able to

8 associate the development of the symptoms as being due to

9 presence in the Gulf War versus occurring if they had not

10 have gone.


11 They couldn't have been that population that

12 would have developed this. I am not saying that is the

13 case.

14 DR. CLAUW: Right.


15 DR. LASHOF: But from your presentation, that

16 could be a conclusion. I would like you to comment on

17 that.


18 DR. CLAUW: Well, it is a very good comment.

19 And I guess this is probably a roundabout way of getting

20 around your question because we don't -- it would be very

21 difficult to do the type of study that you are suggesting,


22 as to looking at the specific triggers that might have








213


1 caused the Gulf War would be impossible now. That kind of

2 study would almost need to be done prospectively because

3 there were so many different triggers -- the potential


4 triggers that these people were exposed to: physical

5 stress, emotional stress, and perhaps toxins or different

6 kinds of immune stress such as infections.


7 I guess my feeling as both a treating physician

8 and as a researcher is that what we need to focus on is

9 the bottom part, is where people are right now. It

10 doesn't really matter -- when you take care of someone


11 with chronic fatigue syndrome or fibromyalgia, it doesn't

12 matter if they got it as a part of an infectious prodrome

13 or if they got it after a motor vehicle accident or if

14 they got it after their mother died.


15 What they have -- the symptoms they have are

16 all the same and they are treated the same. They are not

17 post-infectious chronic fatigue syndrome and post-


18 traumatic fibromyalgia and post-emotional whatever you

19 might want to call it all really look the same.

20 And I think what we need to be focusing on is

21 what happens to the body that leads these symptoms to keep


22 going on and on well after the stressor, well after the








214


1 person has that type of exposure. And that is -- as a

2 researcher, that is the kind of thing that I am focusing

3 on, is looking at how -- why does someone have a headache?


4

5 Why do they have muscle pain? Why do they have

6 a bowel that has intermittent diarrhea, constipation? And


7 we are getting closer. We are looking at, you know,

8 abnormalities in autonomic function, abnormalities in

9 nociception can be identified in these individuals.

10 We just have to test these hypotheses and look


11 in control groups and make sure that what we are looking

12 at are true observations rather than another set of

13 epiphenomena.

14 DR. LANDRIGAN: Other questions? Yes.


15 MAJOR KNOX: Have you treated Gulf War veterans

16 for this syndrome yourself?

17 DR. CLAUW: Only a couple.


18 MAJOR KNOX: Only a couple.

19 DR. CLAUW: Three or four.

20 MAJOR KNOX: And they responded to the therapy?

21 DR. CLAUW: Yes. But I wouldn't make a claim


22 that I am going to be able to successfully get all Gulf








215


1 War veterans better. I do think, though, that there is a

2 very -- there is a lot of expertise in treating this group

3 of illnesses and unfortunately a lot of people don't have


4 it.

5 And that expertise doesn't happen to be

6 centered in the VA medical centers. And so, you know,


7 when I have talked to people at the VA -- I am -- I was on

8 staff at the VA. Now I still have an appointment at the

9 VA. Or when I have talked to people in -- at Walter Reed

10 in the federal government that are looking at treating


11 these illnesses, my -- and it is nothing against them but

12 I don't think they really know how to treat this spectrum

13 of illness.

14 These aren't the people like myself that have


15 sort of devoted their life to doing research in it or

16 devoted their life to treating this spectrum of illness.

17 And the worst thing that you can do is confront an


18 individual with this spectrum of illness and tell them it

19 is all in their head.

20 And that is what happened. That is what

21 happened to these individuals. And it is not all in their


22 head. It is -- it might originate in their head. There








216


1 may be central mechanisms by which these symptoms occur

2 but once -- and then what happens is, people develop

3 distrust of the whole medical profession, of the whole


4 healthcare system and it is a self-perpetuating cycle.

5 Once again, I see it over and over again in

6 individuals with fibromyalgia and chronic fatigue


7 syndrome. The same thing happens where they originally

8 have the symptoms. They present for medical attention.

9 They are alienated, sort of, and then from that point

10 further, it is very hard to sort of break into that cycle.


11 MAJOR KNOX: And can you speak to the doses

12 that you begin patients on -- the low tricyclic doses?

13 DR. CLAUW: Both of those drugs, amitriptyline

14 and cyclobenzaprine, the lowest dose that they are


15 available in are ten milligrams. And in many cases, you

16 have to have them cut the tablet in a quarter or a half.

17 Start taking it two to three hours before bedtime or else


18 the person will be drowsy for two days afterwards.

19 Educate the person that even when they take a

20 quarter of a tablet and when they take it two to three

21 hours before bedtime that there are certain side effects


22 they are going to have that are predictable but those will








217


1 get better and better with time.

2 My strong contention is that those are the two

3 most effective drugs if you use them correctly in that


4 those are among the only drugs that will lead to a global

5 benefit in symptoms rather than antidepressants which may

6 help someone's depression but don't do anything for their


7 pain, don't do anything for their fatigue.

8 These drugs seem, for reasons that aren't

9 clear, to be effective in treating the syndrome more

10 globally rather than just specific syndromes or specific


11 symptoms of the illness.

12 DR. LASHOF: Have you done any double-blind

13 controlled studies of that therapy in --

14 DR. CLAUW: I haven't. Other people have.


15 Both amitriptyline and cyclobenzaprine have been shown in

16 multiple double-blind placebo-controlled studies to be

17 effective in fibromyalgia. That hasn't been done in the


18 Persian Gulf Syndrome patients but it has been shown to be

19 effective in fibromyalgia.

20 In fact, everything that I listed as proven has

21 been shown in at least two double-blind placebo-


22 controlled -- cognitive behavioral therapy, aerobic








218


1 exercise, and amitriptyline and cyclobenzaprine. The ones

2 I labeled as anecdotal either have only been done in one

3 study or are just that, anecdotal.


4 DR. LANDRIGAN: Okay. Thank you very much.

5 Nice presentation. We have reached a happy state of

6 affairs. We are about 12 or 13 minutes ahead of schedule.


7 There is one young lady that came forward this morning and

8 wanted to present. We couldn't put her in this morning.

9 I don't know your name, ma'am, but you be

10 willing to come forward now? Is this a good time for you?


11 And if you would, introduce yourself. Ms. Joanne Rigdon.

12 Ms. Rigdon, if you would come on up, we will be glad -- if

13 you can keep it to five minutes or thereabouts as did our

14 speakers this morning, please.


15 MS. RIGDON: I want to thank you for this

16 opportunity. Can you hear me?

17 DR. LANDRIGAN: Yes. But the recording --


18 maybe she -- could you hold the mike in your hand? Would

19 that be convenient?

20 MS. RIGDON: Okay. Is that better?

21 DR. LANDRIGAN: Yes.


22 MS. RIGDON: I want to thank you for the








219


1 opportunity. This -- I was not expecting it so I am not

2 totally prepared.

3 DR. LANDRIGAN: I am sorry I didn't -- I


4 couldn't forewarn you but it looked like a good chance.

5 MS. RIGDON: That is all right. My name is

6 Joanne Rigdon. I was a chief petty officer in the Navy


7 when I was called to active duty and sent to the Persian

8 Gulf. I came down with an infection immediately after I

9 got there -- an upper respiratory infection that was

10 pretty severe.


11 And while I was on quarters with this

12 infection, I received the anthrax injection, which I found

13 out later I should not have received under those

14 circumstances. But I was there for three months and I was


15 airlifted out of there with an injury and came back to the

16 States.

17 And I was in therapy for a year. I had two


18 surgeries on my shoulder. And when I got out of therapy,

19 I was discharged from the Navy and returned to -- or, not

20 discharged, released from active duty and returned to San

21 Antonio to continue my civilian career.


22 And I think within 90 days, I was developing








220


1 symptoms of convulsions -- well, mainly convulsions at

2 that time. And subsequently I got to where I was having

3 convulsions three and four times a day that were totally


4 uncontrolled.

5 I have been in and out of the hospital several

6 times. I have had a number of other kinds of diagnoses.


7 I don't know if they are specific diagnoses or if they are

8 just sort of suggestions of what might be wrong but I have

9 been told that I have had encephalitis, I have

10 fibromyalgia, probably the chemical sensitivity syndrome.


11 I do have a blood disorder. I do have a

12 difficulty walking. I can walk but not without some sort

13 of assistance. I have lost my driver's license. I have

14 lost my civilian career. I have been discharged from the


15 military. I did receive a 20 percent disability for all

16 of my inconvenience.

17 I have nothing from active duty whatsoever.


18 But I have received care from the VA for the last probably

19 three to four years. It has been somewhat frustrating at

20 times, somewhat very rewarding at times. Right now, I am

21 under the care of a rheumatologist who has been


22 exceedingly helpful.








221


1 But I have been told everything from, You are

2 not entitled to VA care, to, Why are you wasting our

3 time?, to, Why didn't you come here to begin with?


4 And I was also told by one of my doctors -- I

5 asked him if he would please review the medical records

6 that I had in the civilian community. He said, I have.


7 He said, I have spent more time looking at your file than

8 anybody else's. And he says, And that is a real shame

9 because some of my other patients are really sick.

10 And I thought, What do you think that tells me?


11 That tells me that there is nothing wrong.

12 And they have been telling me this for four

13 years, that I do not have a disability. That it is, if

14 anything, psychological. That my convulsions are more


15 than likely brought on by psychological problems that I

16 had prior to the Gulf War.

17 I cannot prove that I was healthy before I went


18 overseas because all of my medical records disappeared. I

19 have nothing from the years that I was in the Reserves

20 before I went overseas. It has really been a struggle.

21 Right now, I don't work. I don't drive. There are a lot


22 of things I don't do anymore that I used to do a lot.








222


1 But I do go to school. The VA is sending me to

2 vocational rehabilitation training and I appreciate that

3 very much. And I do appreciate the VA hospital. It has


4 been extremely kind on some occasions and I do have some

5 very good friends there. Some people I would rather not

6 see again there, also, but I really would encourage


7 anybody who has any influence at all with the VA, I would

8 encourage you to pursue this.

9 Whatever this problem is, whether it is a

10 syndrome, whether it is an illness, whether it is a


11 figment of my imagination -- I don't really care. Just

12 tell me what it is and help me get over it.

13 DR. LANDRIGAN: Thank you very much, Ms.

14 Rigdon. How long were you in the Reserves? How many


15 years did you serve?

16 MS. RIGDON: Twelve years.

17 DR. LANDRIGAN: And then?


18 MS. RIGDON: And then I had 15 months of active

19 duty.

20 DR. LANDRIGAN: Was this the only time you ever

21 did full-time active duty?


22 MS. RIGDON: Yes.








223


1 DR. LANDRIGAN: Okay. Other questions?

2 MAJOR KNOX: I have one. Can you tell us what

3 caused you to be Med-Evac'd home?


4 MS. RIGDON: My shoulder injury.

5 MAJOR KNOX: A shoulder injury. Did you have

6 any head injury at the time?


7 MS. RIGDON: No. They sent me back to the

8 States for, well, diagnostic care because they -- one of

9 the doctors who saw me thought maybe I had a tumor in my

10 arm. And I didn't but --


11 MAJOR KNOX: What is your 20 percent disability

12 related to?

13 MAJOR KNOX: It was related to seizures. They

14 have now upped that to 40 percent. They gave me another


15 20 percent for my left shoulder because I do have -- well,

16 I don't have complete use of my left arm. But I have

17 nothing yet for any of these other kinds of problems that


18 I am experiencing.

19 MAJOR KNOX: And you don't pay for any of your

20 care that you receive at the VA, do you?

21 MS. RIGDON: Not for what I receive at the VA.


22 But I receive a lot of care from the private sector








224


1 because I spent all of my initial -- well, all of my

2 initial treatment -- my initial two months in the hospital

3 and everything else was done in the private sector because


4 I was told I was not eligible at the VA for treatment.

5 DR. LANDRIGAN: Okay. If there are no more

6 questions, then thank you very much. We really appreciate


7 your coming forward.

8 MS. RIGDON: Thank you.

9 DR. LANDRIGAN: Let's take a break now. Let's

10 see if we can keep it to 15 minutes. It is now 2:30 so we


11 will come back at a quarter to 3:00. Thanks.

12 (Whereupon, a short recess was taken.)

13 DR. LANDRIGAN: All right. Let's please resume

14 our seats and continue the meeting. Well, our next


15 speaker this afternoon is Dr. Edward Hyman from New

16 Orleans, Louisiana. Dr. Hyman's topic is bacteriuria and

17 antibiotic treatment. Dr. Hyman.


18 DR. HYMAN: I will start off with a video.

19 This is a video of my first patient that I took with a

20 video camera.

21 (Whereupon, a videotape was played.)


22 DR. HYMAN: Thank you for inviting me. I sent








225


1 in my curriculum vitae. I don't know if it was

2 distributed but let me briefly say that I am a veteran in

3 the Navy of World War II. I am one of the youngest


4 graduates at Johns Hopkins Medical School ever.

5 I interned at Barnes at Washington University

6 of St. Louis. Residency at Stanford and research at


7 Stanford. And into the Brigham at Harvard where I

8 peacefully left -- gave up a subsequent appointment to go

9 out to see disease in the real world before it is tampered

10 with and sent to a so-called tertiary center.


11 Published in Nature and publications of the

12 American Chemical Society and the Biophysical Society, the

13 Lancet, the New England Journal of Medicine, Biotech, and

14 Histochemistry, a pathologists' journal on staining


15 technology primarily, and the work on this is in the

16 international publication called Nephron because the

17 findings are largely in the urine and I think a major


18 change will occur because of that.

19 If 5 to 10 percent of 700,000 military persons

20 who were briefly in a small geographic area came down with

21 a single illness, that is an epidemic and you must suspect


22 that something happened to them there. If 50,000 military








226


1 and VA doctors have not been able to find the illness in a

2 1,400-page textbook in the five years since, then you must

3 conclude that it is not in the textbook, code book, or


4 what I call a cookbook.

5 What about the stress syndrome and the

6 psychiatric diagnoses? I personally performed separation


7 physical examinations on many hundreds of Marines who

8 pushed bayonets into Japanese soldiers for three years in

9 the South Pacific islands. I did not find a single one

10 with the so-called stress syndrome after those three years


11 of extreme stress.

12 I cannot believe that the 100-hour war caused

13 an epidemic of the stress syndrome. Like any other

14 poorly-defined disease, a psychiatric diagnosis is then


15 made by default. Applying this label without

16 justification is a disgrace to those who served my country

17 in war.


18 Nature of the illness. In 1992 when I saw

19 these sick veterans on television, I realized I had been

20 studying their illness for about 30 years. It is an

21 illness which was familiar to doctors 50 years ago but


22 which has been lost from the textbooks since.








227


1 This illness, which I have found in each

2 veteran and family member that I have encountered -- and

3 that is some 40 to 50, including one of the multiple


4 chemical sensitivity syndrome discussed here this morning.

5 The illness is a bacteremia, usually a streptococcal

6 bacteremia.


7 By that, I mean the sick veterans have germs,

8 usually streptococci, floating around in their blood. And

9 as they float in the blood, they reach every organ in the

10 body: the joints, the muscles, the brain, the liver, the


11 heart, the lungs, the kidneys, the skin, et cetera, and in

12 females, the uterus.

13 The resulting illness manifests almost

14 universally as chronic fatigue but with pains in muscles


15 and fibrous tissue or fibromyalgia, with nerve and mental

16 findings, neuritis and brain loss, with lung impairment,

17 with arthritis of one kind or another, with skin rashes


18 usually that itch, with blood changes, et cetera. The

19 illness appears to be mildly contagious. Chemical

20 afflictions are not.

21 As postulated in the 1920s and demonstrated in


22 the 1930s, streptococci enter the blood following a tooth








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1 extraction. patients who have a bad heart valve or a

2 heart deformity may get a fatal heart infection, bacterial

3 endocarditis. That is why dentists today give penicillin


4 prophylaxis before dental work.

5 Since the 1930s, there must be a hundred papers

6 in the medical literature demonstrating that many events


7 other than pulling a tooth result in streptococci entering

8 the blood stream. By improving the method of detecting

9 the germ, several investigators have shown that apparently

10 normal people have these germs in their blood without


11 symptoms and without an initiating event such as pulling a

12 tooth.

13 Comparable events occur in other infections.

14 For example, 10 percent of persons with lung tuberculosis


15 have TB germs floating in their blood, going to every

16 organ in their body, and coming out in the urine. In

17 syphilis or Lyme disease, most victims have the germ in


18 their blood, going to every organ in the body.

19 I have found and published that virtually every

20 healthy person has dead streptococci or like germs in his

21 urine. That is published in Nephron. They come from the


22 blood by way of the kidney. But dead germs were once








229


1 alive, and alive inside the body.

2 However, in many illnesses classified as

3 illnesses of individual organs, the number of blood-


4 derived germs I see in the urine goes up 100 to 1,000

5 fold. This number is reduced by antibiotics which benefit

6 or wipe out the illness.


7 This is exactly what happens in Desert Storm

8 Syndrome. In 1992, when I took my first victim of Desert

9 Storm Syndrome that you saw on television in front of a TV

10 camera, the antibiotics which killed the excessive germs


11 and eliminated their telltale residues from the urine

12 restored Navy Chief Petty Officer to health. Now, three

13 years later, he is off medicine and still healthy. Chief

14 Tom Lane was schedule to speak here this morning.


15 What are the specific diagnostic tests I use to

16 diagnose the illness of Gulf War veterans and their

17 spouses? First, I review the extensive medical record,


18 the tens of thousands of dollars of tests already done in

19 their weeks and months in government hospitals.

20 When the veteran gets here, I do a careful

21 history and physical examination. Physical findings are


22 usually minimal except for shortness of breath, overt








230


1 arthritis or brain defects, or small skin pustules. There

2 is a classic one right there and there is a millimeter

3 rule. They are usually no more than a millimeter in


4 diameter and they do not occur in a pore or hair follicle

5 and they come from underneath.

6 These may contain a few yeast, which was highly


7 curious because that may be one of the vectors, and they

8 usually contain some streptococci like those sitting up

9 there. And when you grow them out, you find the

10 intermediary form of Gram-negative streptococci that is so


11 well described in the bacteriology literature and

12 eventually on the second daughter culture, they become

13 classic streptococci. Usually these are much smaller than

14 the classic and then they become classic.


15 I examine a fresh urine by my published

16 technique and I culture that urine for fastidious cocci by

17 an update of the old-fashioned culture technique. Why


18 does the routine laboratory not find the germs? They use

19 a standardized test method which is designed to quickly

20 find a different kind of germ and which is well known to

21 fail to find this sort of streptococci.


22 If one fails to find the germ in one case, then








231


1 that veteran has a strange disease or is sent to a

2 psychiatrist. If the government fails to look in 10,000

3 cases, then 10,000 victims have no diagnosis. If the


4 government waits five years, then the illness may evolve

5 into the classic diseases of individual organs that I

6 started to study 30 years ago. The government will still


7 miss the germs.

8 My individualized approach to treatment. I

9 give antibiotics to target the bacteria that I can detect

10 in the urine within the hour. These bacteria reflect the


11 bacteria in the bloodstream. I give intravenous

12 antibiotics following the golden rule of pharmacology.

13 That is, I give an antibiotic in sufficient

14 dosage to destroy the bacteria that appear to be viable


15 under the microscope or until I encounter adverse effect

16 of the drug which requires me to change. I am quite

17 familiar with the ill effects of each of the antibiotics I


18 use.

19 If the bacteria are not affected by the

20 antibiotic, then under close observation, I may increase

21 the dose of the antibiotic, add a second antibiotic,


22 change the antibiotic, or all three. I continue until the








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1 excretion of the resulting dead bacteria falls to normal

2 or near normal.

3 For those who prefer a routine procedure,


4 should I get more experience in this disease, I would

5 write a simple algorithm for them to use as a recipe.

6 Unfortunately, medicine has descended to that.


7 I have treated nine U.S. servicemen, one RAF

8 physician, eight to ten wives, and two adolescent

9 children. All of my work has been done without

10 compensation, pro bono. Initially, 100 percent improved


11 noticeably. All the wives and two adolescents have not

12 been sick as long and only one relapsed. She has been

13 successfully retreated.

14 Several military service persons relapsed.


15 They should have been intensively treated for a longer

16 time. Of those who relapsed, all but three were again put

17 in remission either on one or two return visits or by


18 getting some physician or visiting nurse to administer the

19 large doses of antibiotics at home.

20 The RAF physician has found it difficult to

21 return and cannot get medications in England. After two


22 relapses and one retreatment, she is much improved but








233


1 still not well. She also has an immune defect in her CD3

2 and CD4 lymphocytes but she does not have AIDS.

3 The remaining two U.S. veterans would not


4 return for reasons that are not medical. Each remains

5 improved over his pre-treatment status. All of this out-

6 of-town follow-up has been done by telephone and by


7 examining the preserved urine sent by mail.

8 This is not the best way to follow a physician,

9 but that is all that was available. It has been very

10 expensive for me.


11 The following are my thoughts about a link

12 between the presence of bacteria in the urine and -- or,

13 bacteria in the blood and particular exposure in the Gulf

14 theater. First, the cluster means that something started


15 there in a limited time period.

16 A. I cannot link the pattern of clinical

17 illness to any of the warfare chemicals thus far mentioned


18 nor can I relate any chemical to increased susceptibility

19 to bacterial infestation. My mind is certainly not closed

20 on that.

21 Recently, there has been an epidemic of Sarin


22 poisoning in Tokyo. Professor Heyndrickx of Ghent,








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1 Belgium, recently sent me a few long-term personal records

2 of some of the severe victims. In their clinical follow-

3 ups, the pattern of illness does not resemble the Desert


4 Storm Syndrome.

5 Thus, I do not believe the organic phosphorus

6 poisons or choline esterase inhibitors, with or without


7 pyridostigmine, would serve as a cause of the illness or

8 of the bacteremia found.

9 B. I am fully aware that insertion of a

10 plasmid of DNA into certain bacteria could produce a


11 modified streptococcus or staphylococcus which, upon entry

12 into the human, would set up colonies within the body and

13 could cause an illness just like the Desert Storm

14 Syndrome.


15 I have saved a few of the bacteria isolated.

16 Perhaps without help, I could rule that in or out.

17 However, I would like to have someone look for the


18 abnormal nucleic acid sequence in common, one that would

19 result in the production of certain chemicals by the

20 bacterium.

21 Such a chemical would increase invasiveness by


22 inhalation or by aerosol -- which did occur over there --








235


1 or by transport across the gut membrane or it would set up

2 colonization within the human. That would be a germ

3 willfully modified for the purpose or it may just be a


4 strain indigenous to the area.

5 Such DNA sequences are already known and I am

6 told they take almost a week to create.


7 C. Some retrovirus could set up the patient,

8 even if the viremia was relatively asymptomatic.

9 Clearly the first step is to restore the sick

10 veterans. When I tried to get involved one year after the


11 war, it would have been easier than it will be after five

12 years. The infections seem to get more refractory as time

13 goes by.

14 My role in this adventure has been extremely


15 costly in terms of time, money, and removal from my work.

16 Originally, I thought the best way to show that my

17 thinking was correct was to take sick veterans and restore


18 them. This I have done repeatedly.

19 But even since I stopped taking veterans pro

20 bono, I have spent thousands of hours in totally useless

21 paperwork. My office has a log of over 1,000 veterans


22 begging for help. "I am 27 years old and I cannot work an








236


1 eight-hour day or a 40-hour week. I have lost my job and

2 can't get another. I am bankrupt and I have lost my home.

3 I have a wife and two children. Doc, what do I do now?"


4 The Congress has voted $3.4 million for me to

5 continue my work. The president signed the bill into what

6 I used to believe was law. These funds are still withheld


7 in the Department of Defense. I have letters asking me to

8 create yet another protocol.

9 Two years ago, I got a letter from a two-star

10 general telling me the funds would be sent within a week.


11 Not a cent has come to date. I have jumped through

12 innumerable hoops like a circus animal. Clearly, my

13 government does not want to stand up to its

14 responsibilities to care for the veterans. Unless


15 something happens soon, I see no use in retaining friends

16 in academia to hold their breath along with me.

17 Finally, what has happened is quite painful for


18 me to watch. The Department of Defense has found that the

19 Desert Storm illness is now evolving into known clinical

20 illnesses, the same clinical illnesses with occult

21 bacteria in the blood that I have studied.


22 I have treated hundreds of cases of these








237


1 resulting illness with good success and with precious few

2 adverse effects, even of a mild sort. It is criminal to

3 allow this to happen when so many with this illness can be


4 treated with success.

5 Watching to see how long it takes the illness

6 to evolve reminds me of the well-known, ugly Tuskeegee


7 Experiment conducted by my government decades ago. I urge

8 my president to intervene immediately. Should he not

9 intervene, then with agony, I will return to my work and I

10 will continue to watch as veterans and their families


11 continue to suffer and perish.

12 Thank you for inviting me.

13 DR. LANDRIGAN: Thank you, Dr. Hyman. Are

14 there questions for Dr. Hyman in the panel?


15 DR. LARSON: Dr. Hyman, you are -- what you are

16 saying is, it is the -- it is a long-term occult low-level

17 streptococcemia and streptococcus in the urine. Is that


18 correct? Would you --

19 DR. HYMAN: That is correct.

20 DR. LARSON: Okay.

21 DR. HYMAN: The ones in the urine necessarily


22 and mathematically must come from the blood. And that is








238


1 published in the referee journal. One referee gave an

2 accolade like I have never seen before.

3 DR. LARSON: I am not that familiar with


4 chronic streptococcal infection where you can find the

5 organisms in the blood and the urine for a long period of

6 time. Is it a -- you said it is a Gram-negative


7 streptococci that then becomes Gram-positive so it is a

8 different kind? Does it have a name?

9 DR. HYMAN: I call it systemic coccal disease

10 because it includes so many clinical diagnoses. However,


11 if you go back to the 1910s and 1920s, this was known.

12 They used techniques of drawing the bacteria, which have

13 been abandoned ever since Dr. Cass' landmark paper in

14 1956.


15 No laboratory in the United States, military or

16 civilian, and probably few of any in the world go back to

17 what they used to do or what I learned to do as an intern


18 working for Dr. Barry Wood, who is a microbiologist at

19 Harp [phonetic] and who was head of microbiology at Johns

20 Hopkins when he left St. Louis.

21 This illness is far more common. Recently, Dr.


22 Charles Zierdt at the National Institutes of Health








239


1 published on this. He isolated it from the blood but it

2 takes many weeks and highly specialized technique. All I

3 can say is, that Charles Zierdt congratulated me because I


4 could find it within the hour in the urine.

5 Many particles transfer from blood into urine,

6 leaving very little trace in transit. I am working on


7 that now quietly at my own expense in my own laboratory.

8 DR. LARSON: And then just another question.

9 The $3.4 million was a grant that was granted to you but

10 then it -- you don't know where the money is.


11 DR. HYMAN: It is in the appropriations for the

12 Department of Defense specifically labeled for the use of

13 Louisiana Medical Foundation -- and that is my work -- and

14 it has been hung up by a Dr. Stephen Carl Joseph in the


15 Department of Defense, one of Mr. Clinton's appointees,

16 and he does it at the advice of a Colonel William Bancroft

17 at Fort Detrick -- and I wonder about him because, well,


18 how can you help but wonder about him?

19 They have had several phony reviews and finally

20 one review which followed -- well, General Blanck, to his

21 credit, not understanding this, he chose a civilian


22 professor who is thoroughly familiar with this and wrote a








240


1 contract for him to come down and visit to see what I am

2 doing.

3 And after staring into my microscope for over


4 an hour, he had one remark. We have missed this all these

5 years.

6 In 1993 in December, he recommended to General


7 Blanck that we go ahead and General Blanck has been

8 converted ever since. However, the rest of them have all

9 been tainted by Dr. William Bancroft at Fort Detrick, even

10 when this particular fellow went up to Walter Reed and


11 convinced each member of the committee that it should go

12 through.

13 Frankly, I am sick of their illogical logic or

14 the asinine remarks. I don't know -- I don't see any


15 evidence that my government is interested in tracking this

16 down and secondly, I haven't had a failure yet. I don't

17 know how many of these people can be retrieved. I would


18 wildly guess that 50 to 90 percent of them including,

19 perhaps, the one that had multiple chemical sensitivity

20 this morning.

21 I think this ought to be done. I think we owe


22 it to them. That is my opinion as a Navy veteran myself.








241


1 DR. LARSON: And do you have any sense about

2 the occurrence of this bacteria in the regular population?

3 Do you ever -- have you ever seen it in other people?


4 DR. HYMAN: When you see it in other -- in the

5 regular population, it is already manifested clinically,

6 perhaps as fibromyalgia. They all have chronic fatigue


7 but that is as nonspecific as they come. You can be dying

8 of cancer and have chronic fatigue.

9 That is where I cut my teeth on it. And I

10 really got into it by more ultimately studying the


11 sediment of urine, which has never been done succinctly.

12 And that was my first publication on the subject. And

13 then as I looked for a control, I learned that a control

14 is very difficult to find because the nature of the


15 illness is so diverse that what I have really done is

16 brought the whole thing together as a single entity based

17 upon the cause of illness.


18 I almost got thrown out of medical school in my

19 senior year for doing the same thing on the ward in

20 Baltimore.

21 DR. LARSON: Would you be so kind as to provide


22 us with a -- I guess we do have. We have a bibliography








242


1 from you in your resume.

2 DR. HYMAN: I believe I sent Dr. Brix five

3 pounds of paper.


4 DR. LARSON: Okay.

5 DR. HYMAN: I have 14 linear feet on my shelf.

6 If you have anything --


7 DR. LARSON: Okay. It is here. We have it.

8 Thank you.

9 DR. LANDRIGAN: Dr. Hyman, what is the

10 antibiotic regimen that you use?


11 DR. HYMAN: What, sir? I missed that.

12 DR. LANDRIGAN: What is the antibiotic regimen

13 that you have used on these patients?

14 DR. HYMAN: Dr. Albert Gilman -- I think most


15 anyone who has studied medicine has heard of Goodman and

16 Gilman's textbook of pharmacology -- had a beautiful

17 summary. The dose of any drug is q.s.odd, quantum


18 sufficium odd 2.

19 And many of the drugs that they are supposedly

20 not sensitive to, if you raise the dose, they become

21 sensitive. Now, I learned that in '47 when I was working


22 in the lab with Barry Wood. I will use any one of them








243


1 and I will go after the ones that present -- since the

2 finding of almost always grandpas of cocci, perhaps with

3 some yeast, rarely Gram-negative rods, which is the common


4 garden variety of so-called "urinary tract infection," and

5 I will use any one of the ones that -- and push the dose.

6 If it fails, I will swap or increase the dose


7 or swap or add a second or third one. My ambition is

8 not -- has not been -- and as one who practices medicine

9 as a country doctor for a living -- my ambition is not to

10 establish a protocol for the cookbook doctor to use.


11 My ambition is to cure the patient and I have

12 had remarkable success. Now if the government is

13 interested, what I would like to do -- and I have

14 submitted this as a protocol around August of 1993 --


15 would be to show to their satisfaction that it functions.

16 And I saw your television there. You had one

17 of my patients, Mr. Hollingsworth, who now works with the


18 American Legion, who had a splenectomy in high school

19 following a football injury before he joined the Marine

20 Corps. He is completely retrieved.

21 Another one, whom I told Dr. Brix, who wanted


22 to come to speak is a helicopter pilot who was taken off








244


1 of flight status because he was incapable of handling that

2 flying tank, as he describes it. And then one week after

3 returning to Fort Riley, they put him back on full flight


4 status.

5 I didn't make either decision. I think that is

6 a decision made by a third party. But what I thought the


7 proper thing to do -- and having given anesthesia for the

8 fourth heart operation, I was sitting there watching what

9 happened. After Dr. Blaylock described in the medical

10 literature what he did, he then had a whole bunch of


11 doctors coming from around the world to act like

12 residents.

13 Now, the only way I know to teach this is on-

14 site teaching. Now, before I ever published my first


15 paper on this, I chose the man who has the reputation in

16 academia as the hardest man in the world to convince. And

17 after he -- for a year, he called me nuts or crazy or


18 bananas or something like that.

19 He came down because I stuck with it. And then

20 he slipped his own specimen in and he says, You see, you

21 think it is positive and I am perfectly well. I told him,


22 You are not well. That is all there is to it.








245


1 So he took my reagents back with him to New

2 York and he repeated and repeated and repeated and he was

3 positive every time. About three months later he phoned


4 and he says, You know, now I can remember where I parked

5 my car. I am a different person.

6 He had descended so subtly in civilian life, he


7 didn't realize that he had a reparable disease. Now, this

8 is the way it occurs. However, you have a cluster of

9 persons here. They were all in one place for a short

10 period of time and they came back with something.


11 Maybe something provoked it. Maybe the madman

12 of Baghdad created a particular plasmid which he

13 introduced. And my son, who deals in molecular biology,

14 advises me it would take about a week per organism to


15 produce it. And once you do, you just keep growing it.

16 You go to Home Depot and you get a 26-gallon

17 garbage can and incubate it and you can make a hell of a


18 lot of them. And I remember one patient who says a SCUD

19 missile blew up over his head and the stuff -- the spray

20 that came down was watery. And they called it mustard gas

21 or something like that.


22 The hell it was. It was on his arm for an hour








246


1 before he wiped it off on his pants and that is not

2 mustard gas. It would burn like hell in the meantime.

3 But it sure certain could be a bacterial culture or it


4 could be any kind of culture. It was aqueous.

5 I don't know what happened over there. It is

6 getting too late to find out. I think one root is to


7 isolate enough germs and analyze them sufficiently that

8 you can find a common denominator. I have spoken to my

9 friend Dr. Nicolson and Dr. Nicolson perhaps can be

10 convinced to help. I don't know.


11 I can, myself -- have read sufficiently into

12 the -- what could be the pathogenesis of the whole

13 business, which has fascinated me for 30 years. This is

14 my life work. I think I can test for some of the possible


15 products of many plasmids without any help. I have gone

16 this far without help. I can continue.

17 But I, for the world, can't find out why


18 Colonel Bancroft is so damned convinced that this

19 shouldn't go on. I can't understand it. You sort of get

20 the feeling he is protecting his buttons but I can't prove

21 it. I will answer questions as long as you people are


22 interested.








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1 DR. LANDRIGAN: Thank you. Let me see --

2 DR. HYMAN: I spent an awful lot of time on

3 this.


4 DR. LANDRIGAN: Let me see if there are any

5 more questions on the panel. No? I think we are out of

6 questions. Sorry. Dr. Lashof.


7 DR. LASHOF: You supplied us with a protocol

8 which I assume is the protocol that was submitted for

9 funding -- the proposal for a double-blind study.

10 DR. HYMAN: I supplied you with three


11 protocols. The first is a protocol I was asked to give in

12 1993, June 9, when I testified before the well-named

13 Committee on Oversight of the Subcommittee of the

14 Veterans' Committee of the House of Representatives.


15 Congressman Lane Evans of Illinois was chairing

16 the session. They asked me to submit a protocol. That

17 was a longitudinal study and a by-pass study. The by-pass


18 study was to take on those people whom I knew at the time.

19 For example, a guy by the name of Gene Trucks in

20 Birmingham who had successive MRIs, has lost pieces of his

21 brain. And his urine was strongly positive.


22 I take people like that in a by-pass study.








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1 They are too sick to wait for a study. It is too late

2 with him. He is reduced to a ghoul at this point. And

3 then I do a longitudinal study. And then came these


4 appropriations. We met in Vienna, Virginia, May 9, 1994.

5 And we had the supply by June 1 to Fort Detrick, a

6 protocol for a double-blind.


7 DR. LASHOF: That is the one I have here.

8 We --

9 DR. HYMAN: Right. We had a representative

10 from Walter Reed, a Colonel Wise. We had a person who has


11 worked out approved methodology for quantitating the

12 fatigue and the loss of cognition and other things like

13 that. And we had a world-renowned statistician along with

14 my friend the professor from New York who I worked with at


15 Stanford many years ago.

16 And we all sat down. We worked this thing out.

17 We submitted it and they are still playing with it. They


18 sent it to a committee of the -- Fort Detrick where it

19 was, of course, canned because Bancroft was on the

20 committee. Then they sent it to the AIBS.

21 I don't know how dumb they think I am but this


22 is an organization of ornithologists, ichthyologists, and








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1 herpetologists, acid-rain experts, oceanographers. Not a

2 single practicing physician among them but Fort Detrick

3 supplied them with a few M.D.s and there is my man again.


4 And then they sent it to three professors who

5 never heard of this and hadn't read the background of it.

6 And then finally, a year and a quarter later, they sent it


7 to Walter Reed where the doctor that General Blanck sent

8 was up there explaining it to them. And they all agreed

9 to it.

10 And then they got a letter from Colonel


11 Bancroft saying, No soap. And all the -- No soap.

12 I don't know how many more hoops they want me

13 to dance through. It doesn't matter to me. But as I

14 understand, there are a hell of a lot of veterans that are


15 suffering and I think that is wrong. And I think it is

16 criminal. And I can watch the thing evolve. I understand

17 that Dr. Joseph at the Pentagon has already spent millions


18 of -- something like $10 million to study 10,000 veterans

19 and watch the disease evolve. That is what reminds me of

20 Tuskeegee, Alabama.

21 I know what it is going to evolve to. I have


22 seen the whole thing in civilian life. I think it is








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1 wrong. I think that something has got to be done. I hope

2 this committee has within it the push to push somebody to

3 do something. I think it is terribly wrong.


4 But yes, you are right. I do have that. That

5 protocol is in there. And a revision was made by the

6 consultant to the Walter Reed who is -- used to be the


7 dean of a Adelphi [phonetic] Medical School for its first

8 18 years and is still on their payroll as a consultant.

9 And he is the one who revised it to fit their kind of

10 protocol.


11 And he went up there because he thinks it ought

12 to go through. And he convinced virtually the entire

13 committee until they got this wonderful letter from Dr.

14 Bancroft and it was seven -- nine to nothing against it.


15 There is something queer going on and I think it smells.

16 DR. LANDRIGAN: We shall pass your word on.

17 Thank you.


18 DR. HYMAN: I hope I didn't leave any doubt as

19 to what I think.

20 DR. LANDRIGAN: All right. Our last

21 presentation this afternoon is Dr. Garth Nicolson from


22 University of Texas M.D. Anderson Cancer Center. Dr.








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1 Nicolson is going to talk on mycoplasma infection and

2 antibiotic treatment of mycoplasma.

3 DR. NICOLSON: Thank you, Mr. Chairman.


4 Basically, I am going to continue on where Dr. Hyman left

5 off and talk about infections and their role in Gulf War

6 Illness. Just a little bit about my background for those


7 committee members who I haven't met.

8 I am the David Brutton, Jr. Chair in Cancer

9 Research at the M.D. Anderson Cancer Center in Houston,

10 Texas. I am a professor of internal medicine and a


11 professor of pathology and laboratory medicine at the

12 University of Texas Medical School in Houston.

13 I have published over 420 papers in a variety

14 of different journals, including many of the same journals


15 that Dr. Hyman has mentioned. I serve on 12 editorial

16 boards of scientific and medical journals. I am the

17 editor of two of these; Clinical and Experimental


18 Metastasis and The Journal of Cellular Biochemisty.

19 I am also a father of a Gulf War Illness

20 patient and my entire family has had Gulf War Illness. So

21 I think I am qualified to speak on this topic. We became


22 involved in this when our stepdaughter came back from








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1 service as a crew chief on a Blackhawk helicopter in the

2 101st Airborne Division. And she and practically every

3 one of her colleagues came down sick within six months or


4 so after their return.

5 And so that is how I got involved in this whole

6 process. Let me see if this projector is working. So


7 today, I am going to briefly discuss why we have delayed

8 casualties during Operation Desert Storm. And of course,

9 we don't have all the answers and I don't pretend to. And

10 I don't think Dr. Hyman pretends to have all the answers


11 because we feel that the diseases that have resulted from

12 Operation Desert Storm are complex and due to a variety of

13 different causes.

14 I am going to be discussing the potential


15 biological exposures as a previous speaker did and I would

16 like to divide these up into different categories: acute

17 agents, bacterial pathogens, a variety of which caused


18 very acute symptoms; and chronic agents, which include

19 bacteria and mycoplasmas which can cause a variety of

20 chronic diseases which we think perhaps a large number of

21 the Desert Storm veterans are suffering from.


22 I am not going to cover anything about chemical








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1 exposures but obviously if anyone has had chemical

2 exposures, they are going to be much more susceptible to a

3 variety of different infections.


4 We know from the CDC -- not from the DOD --

5 that service in Operation Desert Storm was hazardous to

6 your health. In fact, I think the CDC study, which was a


7 controlled study where they examined two units in

8 Pennsylvania and two units in Florida -- and these were

9 units that had approximately half the soldiers and airmen

10 deployed to the Persian Gulf and approximately half stayed


11 behind in their respective reserve and guard units -- that

12 there were illnesses associated with the Gulf War.

13 So this is not something that the DOD at that

14 time was willing to admit. And most of you on the panel


15 are well aware of this study. It was published in

16 Morbidity and Mortality Weekly Reports in which fatigue,

17 joint pain, diarrhea, and a number of other symptoms were


18 examined and found to be much higher in the deployed

19 units.

20 And I just made this into a bar graph just to

21 show you. Unit A and Unit B are from Pennsylvania. The


22 red bars indicate the deployed, in this case, airmen from








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1 a Air National Guard and an Air Force Reserve unit. And

2 the yellow bars indicate the nondeployed airmen.

3 These are approximately equal units of equal


4 size and the deployed versus the nondeployeds are

5 approximately equal size. And as you can see by the red

6 bars, it doesn't take much of a mental genius to see that


7 if you were deployed to the Persian Gulf, you have a much

8 great incidence of a variety of these signs and symptoms

9 that we have heard about today, can be put in the

10 category, for example, chronic fatigue syndrome.


11 And here are the two Florida units. Same

12 thing. All the absolute numbers are the same. The units

13 that were deployed do have greater incidence of illnesses,

14 particular chronic illnesses. And so we feel that this is


15 a major problem so we set about to study this.

16 First, we developed a survey form and this was

17 supplied to the committee. I think I supplied enough


18 copies to the committee during the last meeting in Kansas

19 City. We wanted to find out about the individuals who

20 were sick, where they served in the Persian Gulf, the

21 locations.


22 We wanted to find out something about their








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1 chronic symptoms and the severity of the symptoms. We

2 wanted to compare pre- and post-war symptoms. Indicate

3 whether they had any previous diagnoses. We wanted to


4 document symptoms when their blood is drawn because all

5 our tests are based upon blood samples.

6 We wanted to quantify, if possible, their


7 overall illness state. List chemical and environmental

8 exposures, when they happened. We wanted also to know

9 about their vaccinations although you know that this is a

10 very difficult area to get any solid information about


11 vaccinations. And indicate any drugs or treatments.

12 And we also wanted information on their family

13 members. Many of the patients that we have worked with,

14 their entire families have come down with Gulf War


15 Illness, very similar to my own. We published the study

16 in which Dr. Hyman was also an author, where we looked at

17 650 Desert Storm veterans. This just happened to be the


18 date of ours.

19 And again, it is very similar to the data you

20 have seen. A variety of these chronic signs and symptoms

21 like aching joints, chronic fatigue, memory less, sleep


22 difficulties, headaches, skin rashes, so on and so forth,








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1 have very high frequencies in the soldiers and veterans

2 that have Gulf War Illness.

3 And finally, they go down the list to lower and


4 lower frequencies. So this is very much like the list

5 that you have seen before and I have provided this in a

6 publication which came out in the International Journal of


7 Occupational Medicine and Toxicology.

8 And in it, we discussed that there were

9 overlapping chronic signs and symptoms. These included

10 immediate family members. There were multiple apparent


11 causes and of course, that was really a hypothesis. We

12 did not attribute these to psychological disorders.

13 We felt that they were organic in nature and

14 that they were probably due to chemical and biological


15 agent exposures by endogenous and exogenous agents. And

16 as an exogenous agent, we also considered the possibility

17 that there may have been a chemical, biological warfare.


18 And of course, that is hotly denied by the

19 Department of Defense. We have heard today about the

20 chronic fatigue syndrome or CFIDS, chronic fatigue immune

21 dysfunction syndrome. And in fact, we published a paper


22 recently indicating that this is very similar to Gulf War








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1 Illness. And you have heard this before.

2 This is a paper that was published in the

3 Journal of Occupational and Environmental Medicine and I


4 have provided a copy to the committee. But basically in

5 this paper, we conclude that the signs and symptoms of

6 CFIDS closely parallel those found in Gulf War Illness.


7 And that shouldn't be of any news to you now. It was when

8 we submitted the paper.

9 And here is just some of the data. If we

10 compare the literature values, particularly from David


11 Bell, for example, the Gulf War Illness -- they fit sign

12 by sign, symptom by symptom, almost exactly. And if we

13 look at the top 30 signs and symptoms, there were only a

14 few differences.


15 And the one difference here that we found in

16 visual is light sensitivity. We think that, in fact, our

17 values -- now we have gone back. We think they are


18 underreported. So essentially they fit very closely. And

19 in fact, General Blanck was mentioned here earlier and he

20 also came to this conclusion. Published in the CFIDS

21 Chronicle, although we heard he got into a little bit of


22 trouble because of this. He indicated that the symptoms








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1 list fit his CFIDS-like illness.

2 So I think it is pretty clear that these

3 illnesses fit chronic fatigue immune dysfunction syndrome


4 or chronic fatigue syndrome. And I am not going to go

5 through this. You heard this earlier from one of the

6 other speakers.


7 There are some definitions. A working case

8 definition, for example, in 1988, Holmes et al., was kind

9 of the gold standard and there is a new one out in '94.

10 But basically, this is what I wanted to talk about. We


11 think that chronic fatigue syndrome or CFIDS can be caused

12 by infectious agents. And I think that is accepted but

13 what isn't accepted is, what are these chronic agents?

14 These -- certain chronic agents infect our cells, for


15 example, are present in our blood.

16 They can stimulate an immune response. This

17 immune response can result in the release of cytokines and


18 interferons and other substances which can cause many of

19 the symptoms that we see in chronic fatigue syndrome.

20 Now, if we look at the laboratory tests that

21 have been used for chronic fatigue syndrome -- and I won't


22 go through this but many of these tests come up normal.








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1 And this has been very confusing, in fact, to try and get

2 a diagnosis for Gulf War Illness.

3 So I am not going to go through this. I will


4 just flash these up. If we look at CBCs, sedimentation

5 rate, blood chemistry, the thyroid screen -- although in

6 extreme cases we found thyroid disorders. Some patients


7 have been misdiagnosed with a Graves-like syndrome which

8 reverts upon antibiotic therapy.

9 In some cases, soldiers have come up positive

10 for an HIV test even though they did not have HIV. We


11 think we can explain that now and we have looked in a

12 little bit further into the types or organisms that are

13 present in these soldiers.

14 Antinuclear antibody. It is generally normal


15 but it can be abnormal. Lyme Disease -- sorry for the

16 misspelling here -- negative. Chest x-rays, generally

17 negative except in extreme cases.


18 And urinalysis for infection -- the normal

19 urinalysis for infection, of course, comes up normal but

20 Dr. Hyman, with his test, does find abnormalities and I

21 did want to mention that. This is for the classic test


22 and I think Dr. Hyman would accept that if you do the








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1 classic methods, you can't detect anything.

2 Going to the next slide. Liver scan comes up

3 normal except in extreme cases and we have had a few


4 extreme cases where CT, for example, or liver scan comes

5 up abnormal. This is usually at the very terminal stage.

6 Lymph node biopsy comes up normal. That is, neoplastic


7 disorders or other disease states can't be identified.

8 CT scan of the brain comes up normal,

9 generally, for CFIDS but for Gulf War Illness, you can see

10 abnormalities. CD4, CD8 immune function is abnormal as


11 mentioned previously. Natural killer cell is abnormal.

12 So these are some of, now, the abnormal things.

13 A viral activation is abnormal. We don't think

14 that most of these viruses like the EBV have any role in


15 the etiology of it. We think that these generally come up

16 when somebody has a chronic infection. Blood antibody

17 levels can be abnormal and that might be a response to


18 illness.

19 Autoantibodies can be abnormal and many of the

20 patients have autoantibody. And also they have immune --

21 very unusual autoimmune type symptoms, at least in some of


22 the patients. Some of them have been misdiagnosed with








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1 MS. You heard earlier this morning about ALS and so on.

2 The interferons and cytokines like IL2 and

3 interferons show abnormal. That is part of the syndrome.


4 And infections, bacteria and mycoplasma -- we think that

5 can show up. In fact, in a subset of CFIDS patients, we

6 found the same type -- not the same type but mycoplasmal


7 infections.

8 So we have been talking about -- Dr. Hyman,

9 about bacteria. I have been talking about mycoplasma.

10 They are basically the same type of organism. A


11 mycoplasma can be thought of as a bacteria without a cell

12 wall. These are very small organisms.

13 The type that we are dealing with are

14 penetrating mycoplasma described by Dr. Lowe at the Armed


15 Forces Institute of Pathology and others. These type of

16 mycoplasma enter cells. And we think this is very

17 important, in fact, in the disease process because when


18 they come back out of cells, they can take a piece of the

19 membrane with it and we think that this may trigger some

20 of the autoimmune effects which revert upon successful

21 antibiotic therapy.


22 Now, mycoplasmas are known to cause a variety








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1 of different illnesses. Although I put a letter in there

2 from Stephen Joseph indicating that mycoplasmas are not

3 known to cause these types of illnesses, I think that is


4 basically incorrect. And to back that up, somebody sent

5 me the syllabus from the USUHS. USUHS is the Uniformed

6 Services University for the Health Sciences. It is where


7 the medical physicians are trained that serve in the armed

8 forces.

9 And in Pathology Syllabus 6, this disease

10 process was described very adequately by Eileen Marty, who


11 is Chief of Infectious Diseases at the Armed Forces

12 Institute of Pathology. Basically, mycoplasmas do cause

13 illnesses. In fact, we found this out later in looking at

14 that syllabus, the same types of antibiotics that it took


15 us some time to find out, they knew about all along. So

16 that was kind of interesting.

17 I am not going to go through this but


18 essentially the types of signs and symptoms associated

19 with mycoplasma are the very same types of signs and

20 symptoms that can occur in a severe mycoplasma or Gulf War

21 Illness situation. I am going to just skip this to get


22 on. There is a mycoplasma inside cells, what they look








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1 like by electromicroscopy.

2 Now, how are these detected in patients? Well,

3 we started -- that is, Nancy Nicolson and I, my wife --


4 using a technique she developed called gene tracking. And

5 I am just going to go into that very briefly. It is a

6 very powerful method. It is based upon DNA probe


7 technology, DNA hybridization. It is extremely specific

8 and sensitive.

9 We have also used another technique that is

10 very sensitive, polymerase chain reaction. And we found


11 that the classical polymerase chain reaction was really

12 insufficient in examining this so we, in fact, elaborated

13 on a forensic PCR technique to detect mycoplasmal

14 infections.


15 We couldn't find any mycoplasmal infections in

16 the straight blood. We couldn't even find it in the

17 straight plasma of Gulf War Illness patients. We had to


18 go to the leukocyte fraction of the blood, basically

19 because these mycoplasma were penetrating -- intracellular

20 mycoplasma that we detected.

21 So we could find it in the leukocytes. We


22 could find it in the nuclear fraction of the leukocytes,








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1 not in the cytoplasmic fraction. So these penetrating

2 mycoplasma get into the cell. Either they associate with

3 the nucleus or we purify them with the nuclear fraction.


4 Gene tracking is a technique I mentioned that

5 can be used to identify specific genes bound to nuclear

6 proteins purified from subchromatin complexes so we don't


7 have to, in fact, purify the entire DNA to localize a

8 specific gene. And we have used this technique in cancer

9 research over the last few years to study the progression

10 of cancer and the change in a variety of different genes


11 associated, for example, with malignancy and progression.

12 Now, I have four active grants myself, two from

13 the National Cancer Institute, one from the American

14 Cancer Society to study these sorts of things. The gene


15 tracking technique as we use it clinically -- clinically,

16 diagnostically, is we take the nuclear fraction, for

17 example, from the leukocytes of patients like Gulf War


18 Illness patients.

19 We separate out the chromatin complexes, the

20 nuclear protein complexes on low ionic strength gel.

21 Electrophoresis. We transfer those to Immobilon and then


22 we probe them with very specific gene probes. And then by








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1 autoradiography, we can determine a positive reaction.

2 This is a Gulf War Illness patient who came up

3 positive for mycoplasma fermentans incognitus strain. And


4 here is a positive probe result. Here is the control on

5 that. These are various subfractions -- nuclear

6 subfractions. This indicates that this particular


7 mycoplasma was in a complex of nuclear proteins that we

8 consider fairly peripheral, not deep in the nuclear

9 material.

10 Polymerase chain reaction is a technique where


11 you can take a segment of DNA, usually a small segment,

12 and using two sets of primers that are very specific and

13 they are all of the nucleotide sequence you can, in fact,

14 make a complete replica of that DNA and then use a


15 technique to release the DNA that you have replicated and

16 then repeat that process and by a number of cycles, you

17 can amplify up to a million or ten million fold that


18 particular DNA sequence.

19 What we found in the case of the Gulf War

20 Illness patients is that something is blocking this in the

21 classical form of PCR. We hypothesize that there may be


22 nuclear proteins blocking it and unless the DNA is treated








266


1 properly, you won't be able to amplify the DNA, so you

2 don't get a PCR product.

3 This is what we found. In fact, in some of our


4 preliminary studies with Gulf War Illness patients, first

5 the control -- this happens to be a control for any type

6 of mycoplasma. It is a general gene that produces a


7 product with the two specific primers at 607 base pair

8 size.

9 These are positive patients shown here. This

10 little bright line here, this indicates that equivalent


11 size product was made in some of the patients, indicating

12 that they are probably positive for mycoplasma infections

13 although we couldn't identify the species with this

14 particular test.


15 Now, this was one of the things that I proposed

16 to do in a grant to the DOD, was to optimize this

17 particular process. That is very important if you have a


18 clinical type of diagnostic test, that it be optimized,

19 that it be available to be used by anybody, essentially.

20 To do that, you have to really optimize it.

21 So we were going to optimize it for the


22 specificity of the primers for a variety of different








267


1 conditions which are necessary. I am not going to go

2 through these. These are pretty standard. We were also

3 going to confirm the PCR product by sequence analysis,


4 southern hybridization, and so on. These are all very

5 standard techniques and I am not going to just show you

6 the primers.


7 Now, what we have found in our small selection

8 of Gulf War Illness patients. We found that about half of

9 them have a mycoplasmal infection in their blood. And

10 that is the important thing. This is not a superficial


11 mycoplasma infection, as one of the reviewers thought on

12 my grant application.

13 This is not from an oral cavity or something

14 like this. This is actually from the leukocyte fraction


15 of the blood, inside the leukocytes of the blood. In this

16 set of patients, about half of the patients tested

17 positive for any type of mycoplasma. The overwhelming


18 majority of those was this very unusual mycoplasma,

19 Mycoplasma fermentans incognitus. This was first

20 described by Dr. Lowe, the Armed Forces Institute of

21 Pathology.


22 Now, nobody really knows the exact origin of








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1 this mycoplasma. I have heard that this mycoplasma arose

2 as a contaminant in an anthrax culture at Fort Detrick but

3 that is just -- I have no evidence for that. In less than


4 10 percent, we found mycoplasma genitalium. And in fact,

5 this number actually may get lower than that.

6 Now, a number of other common mycoplasmas we


7 could not identify and these are often the types of

8 mycoplasmas like Mycoplasma pneumoniae that you would

9 find, for example, in a respiratory infection. We did not

10 find that in the blood.


11 Now, there are a variety of different

12 treatments for a viral, bacterial, and mycoplasmal

13 infections. For the most part, for bacteria and

14 mycoplasmas, you use antibiotics. Unfortunately, the


15 specificity of these antibiotics is not very great so you

16 try to find antibiotics that work.

17 And in fact, for our findings, we found four


18 antibiotics that we could suggest to primary care

19 physicians. When we found recently about half, I

20 mentioned, Gulf War Illness patients and symptomatic

21 family members have in their white blood cells mycoplasmal


22 infections -- and we have examined greater than 200 now.








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1 The treatment recommendations are several six-

2 week cycles of the following antibiotics: doxycycline at

3 200 mg per day, ciprofloxacin 1,000 to 1,500 mg per day,


4 azithromycin 500 mg per day, minocycline 300 mg per day.

5 So those are the recommendations that we give sometimes.

6 These have to be used sequentially. Different


7 antibiotics, particularly if there is any resistance that

8 develops -- this type of disorder is not easily treated.

9 The reason why we have to use several cycles is given here

10 in this following graph, that after one cycle essentially


11 100 percent of the patients relapsed at various times

12 after removal from antibiotics.

13 After two cycles, only 84 percent relapsed.

14 Three cycles, and finally you get down to as many as six


15 cycles and now the patients are simply -- they don't

16 relapse any longer or if they do relapse, they are so mild

17 that maybe they don't even notice it.


18 The important thing was that with each cycle of

19 therapy, the relapses became milder and milder in terms of

20 the clinical severity. And I think that is important. It

21 shows that we are making some progress. But as Dr. Hyman


22 mentioned, patients are probably not cured of this








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1 disorder. We can simply reduce the

2 level, probably, of the mycoplasma to the point where they

3 are no longer a clinical problem but they are probably


4 still there. You have got to think of this almost like

5 tuberculosis. You can solve the clinical problem but the

6 disease is still there. And if the patients are, let's


7 say immunosuppressed or severely compromised, that we

8 think that this could pop back up again and, in fact, in a

9 number of our patients, this has happened.

10 We published a note in JAMA, Journal of the


11 American Medical Association, about a year or so ago. In

12 fact, we were roundly accused by the DOD of doing this

13 completely in error. We had 73 Desert Storm veterans with

14 CFIDS and immediate family members with similar symptoms.


15 And we recommended to their primary care physicians that

16 they go on doxycycline.

17 Of the 73, 55 responded and eventually


18 recovered. In fact, we now have a study and you wanted

19 information on this. This is now a published study in a

20 peer review journal. In fact, there were four reviewers

21 on this paper because I mentioned to the editor that this


22 might be a controversial paper so he immediately assigned








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1 four reviewers. I should have kept my mouth shut but it

2 worked out.

3 This was a pilot study on 30 Gulf War Illness


4 and 21 control healthy patients. Again, as we found

5 before in the Gulf War Illness patients, 14 out of the 30

6 came up mycoplasma positive in their blood. Zero out of


7 21 of the controls came up positive.

8 Eleven out of 14 of the mycoplasma positive

9 patients recovered after multiple cycles of antibiotics,

10 up to six cycles. Three out of the 14 are still


11 undergoing therapy and are still relapsing. Follow-up

12 studies indicated that the recovered patients are now

13 mycoplasma negative.

14 I left a copy of this paper with you this


15 morning so you can take a look at it. This was published

16 in the International Journal of -- or, will be out soon.

17 I gave you the galley copies. But I have the page numbers


18 in the International Journal of Occupational Medicine,

19 Immunology and Toxicology, Volume V, Pages 69 to 78.

20 Now I would like to go through just a few

21 subjects. I have a little bit of time left and then I


22 want to give a conclusion as to what I think might be the








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1 possible origin of these types of illnesses.

2 Subject A was an Air Force major in military

3 intelligence attached to the 5th Special Forces. He was


4 deployed at King Kahlad Military City. He was present

5 during the SCUD attacks. After six months when he came

6 back to the U.S., he presented with a variety of the


7 symptoms we have heard about.

8 He went on doxycycline 200 mg per day to begin

9 with and 100 mg per day, six-week cycles. He tested

10 positive for Mycoplasma fermentans, using gene tracking.


11 He recovered after three cycles of doxycycline.

12 Occasionally he relapses, especially if he flies or

13 extreme physical activity.

14 Subject B was a lieutenant commander in the


15 Navy. This is one of our best subjects. He was in the

16 SEAL units in the 5th Special Forces. He was deployed on

17 the Joint Special Operations deep in Iraq. Within nine


18 months after he returned, he -- again -- presented with

19 all of the same problems that we have heard about.

20 His illness was much worse after flying,

21 diving, or extreme activity which, of course, being in


22 Special Forces and a Navy SEAL, that is exactly what they








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1 are going to do. He went on doxycycline therapy. He had

2 tested positive for M. fermentans by gene tracking. After

3 several cycles, he completely recovered.


4 Subject C was a Marine Corps colonel. He was

5 attached to the Central Command staff. He was deployed in

6 Saudi Arabia at Central Command headquarters. Within nine


7 months after his return, again he presented with the same

8 types of symptoms that you have heard about.

9 Within 24 months, his wife became ill with the

10 same symptoms. They both tested positive for a mycoplasma


11 species by PCR. They went on doxycycline treatment.

12 After two cycles of doxycycline, the colonel recovered.

13 His wife still is relapsing and she is almost recovered

14 now.


15 Subject D was a captain in the Army in the

16 101st Airborne. He was deployed in Iraq near Base Eagle.

17 Within 16 months after his return, he presented again with


18 the same types of symptoms. His wife became sick with

19 similar symptoms. Their seven-year-old child became sick

20 with similar symptoms. Failed to gain weight.

21 The adults were put on doxycycline 200 mg per


22 day, then 100 mg per day. The child was put on 50 mg per








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1 day. The child, being seven years old, was just above the

2 limit where you might want to apply doxycycline. After

3 several cycles -- as a matter of fact, that should be six


4 cycles of doxycycline, the husband is recovered. The wife

5 is almost recovered. The child completely recovered after

6 only a few cycles. Now she is gaining weight normally and


7 doing very well in school where she was having problems

8 before.

9 Subject E is an Army specialist in a Graves

10 registry unit in the 24th ID. Was deployed in Iraq and


11 Kuwait. Within 12 months after her return, she became a

12 very sick -- matter of fact, she is so sick that she is

13 partially paralyzed, in a wheelchair, requires oxygen.

14 She had trouble with doxycycline. She went on


15 ciprofloxacin 500 mg. I checked -- it should be 1,000 mg

16 per day. She tested positive for Mycoplasma fermentans by

17 both PCR and gene tracking. After -- now that should be


18 about four cycles of ciprofloxacin. She is improving.

19 She has not fully recovered yet but she has made

20 improvement.

21 Subject F is an Army colonel, retired, Special


22 Forces. He was a member of the Press Corps. He was at








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1 various locations in Saudi Arabia and Kuwait. He examined

2 SCUD impact sites. In fact, he is in this room as part of

3 the Press Corps.


4 Within nine months after his return, he present

5 with, again, the variety of the chronic fatigue symptoms.

6 His fiance, who is also here, presented with similar


7 symptoms and both of these were treated with doxycycline

8 200 mg per day. They tested positive with Mycoplasma

9 fermentans by PCR.

10 After a few cycles of doxycycline, they are


11 essentially -- he has essentially recovered but they still

12 relapse occasionally. It is hard to keep a Special Forces

13 man from exercising. Isn't that right, Mike? And he

14 overdoes it. Sometimes relapses.


15 Subject G is a -- was a staff sergeant in

16 military intelligence in the 101st Airborne. He served at

17 various locations in Saudi Arabia and Kahlad. He was near


18 SCUD impact sites. Within six months after he returned,

19 he presented with a variety of the different problems that

20 we have heard about.

21 The spouse also started presenting with the


22 same symptoms. They went on doxycycline. They were








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1 positive. This is the only one in this group that was

2 positive for Mycoplasma genitalium by gene tracking.

3 After one cycle of doxycycline, he stopped it because of


4 his multiple chemical sensitivity. He then went on some

5 other antibiotics. He is still not recovered but we saw

6 him recently and essentially he is now recovered.


7 Subject H was a staff sergeant, 101st Airborne

8 Division. Again, served in Iraq. Was subject to SCUD

9 attack. Within six months after he returned, again he

10 presented with the same types of symptoms we have heard


11 about. He was partially paralyzed in a wheelchair when he

12 contacted us.

13 Actually, his wife had the same symptoms. They

14 both went on doxycycline 200 mg per day, then 100 mg per


15 day. They tested positive for mycoplasma species. After

16 one cycle of doxycycline, he lost his paralysis and he

17 could walk again. They are both recovering now.


18 Subject I was a 30-year-old lieutenant in an

19 NBC unit in 101st Airborne. She served in various

20 locations in Iraq and inspected various NBC -- or, was

21 involved in suspected NBC attacks. Within six months


22 after her return, she presented again with a variety of








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1 the different problems.

2 She had -- particularly, she had menstrual

3 cycle problems like a lot of the females do, multiple


4 chemical sensitivity, memory loss, vomiting, all the

5 things. Required constant sleep. She had to leave the

6 Army. She went on doxycycline 100 mg per day. We had to


7 up that eventually to 200 and we had to switch her,

8 actually, to another antibiotic.

9 She tested positive. We were able to pin that

10 down. It is not a mycoplasma species now. It is


11 Mycoplasma fermentans incognitus. After two cycles of

12 doxycycline, she recovered enough to go back to work. She

13 has had a few more cycles and she is doing fine.

14 This is a very interesting subject. Subject J


15 was a master sergeant in the Air Force. Was a cargo

16 specialist at Dover Air Force Base. Never went to the

17 Gulf although he did receive immunizations. He unloaded


18 Iraqi equipment and SCUD parts at Dover Air Force Base.

19 Within six months after that, he came down with

20 chronic fatigue, skin rashes, aching joints -- the same

21 types of things that we have heard. His wife and three


22 children are now showing the same symptoms. They all








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1 tested positive for mycoplasma species by PCR.

2 The entire family was put on 200 mg per day

3 doxycycline. After two cycles of doxycycline, the whole


4 family is recovering. We have now heard from them. They

5 have relapsed again. They are going to have to go back on

6 another antibiotic.


7 How did this happen? Well, we suspect that

8 there were several possible sources for these infections.

9 First are the vaccines. And we have heard a lot about

10 vaccines. They spent probably half a day during the last


11 meeting on vaccines.

12 Now, it turns out mycoplasma contaminations is

13 not unusual in vaccines and so that could be the possible

14 source. For example, in commercial vaccines it is not


15 uncommon where you will find a lot that has mycoplasma

16 contamination. We know in tissue culture it is very

17 common to get a mycoplasma contamination. So that is the


18 first possibility. And of course, there may have been

19 purposeful seeding of mycoplasma in vaccines.

20 The second possibility. Backblow or plumes

21 from bombing of chemical biological warfare factories and


22 bunkers deep in Iraq. The Special Forces units that had








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1 to go deep in Iraq may have been exposed this way.

2 Three, the purposeful seeding of exclusionary

3 regions in Iraq. Some of the military intelligence people


4 that we talked to that were quite sick after going into

5 Iraq indicated that there were certain regions that had

6 signs in Arabic, "Do Not Enter," and so on. There were


7 nothing but dead animals in those regions.

8 Those areas may have been purposely seeded. In

9 fact, they had proposed that they were going to do that.

10 At least, a U.N. inspection team indicated that.


11 And number four, which is very important, SCUD-

12 B attacks. We have heard about -- that a lot of the

13 people that became sick after SCUD attacks. We have heard

14 this description over and over. These were SCUD attacks


15 where they weren't ground burst, high explosive types.

16 They were low explosive, low yield, high altitude bursts

17 where a fine mist would come down -- a water vapor or a


18 mist would come down. That is very consistent with a CBW

19 type of warhead. The U.S. inspection team indicated that

20 they did have the offensive capability of delivering these

21 types of warheads on SCUDs.


22 So the delayed casualties to Desert Storm could








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1 be due to a number of possible exposures by chemical and

2 biological agents. And I have only covered the

3 biological. Obviously, the chemical exposures are very


4 important as well and these have been mentioned. I am not

5 going to comment on that but let's go to the biological

6 exposures.


7 There were a variety of possibilities, both

8 acute agents and chronic agents, and most of these agents

9 fall under the category of CBW. I realize that but some

10 of them may not be. In the area of acute agents, we have


11 all heard about anthrax and botulism. And there was also

12 clostridium and other types of bacteria.

13 We knew that the Iraqis had this capability.

14 This was mentioned by the U.N. inspection team. They not


15 only had the capability but the U.N. inspection team had

16 indicated that they had the capability. They had also

17 grown up large quantities of bacterial biological


18 weaponry.

19 We don't know what happened to that. We don't

20 know if they are stored or if they actually used it.

21 There were orders put out to the generals in the field --


22 you heard that -- at battalion level, to use CBW. And we








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1 have heard that particularly if units penetrated into

2 Iraq, they had standing orders to use it.

3 We have been interested in chronic agents. Of


4 chronic agents, I put in that category mycoplasma,

5 brucella, tularemia, and other possibilities because these

6 are agents that would not show up immediately. These are


7 agents that would show up some time after the conflict.

8 And that is consistent with the six-month or so period of

9 time which it took for symptoms to show up.

10 We are going to examine some of these


11 possibilities. The next one we are going to examine in

12 brucella. We found that so far in the patients that we

13 have examined, about half of them have evidence of

14 mycoplasmal infections in their blood and they revert to


15 mycoplasma negative after successful antibiotic treatment.

16 The types of antibiotics that we are using

17 could also knock down brucella, for example, and tularemia


18 as well so we need to go back and look at that. Since the

19 Iraqis were operating under Soviet war doctrine, that war

20 doctrine indicates that you mix conventional and

21 unconventional weaponry.


22 If you look at chemical and biological warfare,








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1 that doctrine suggests that you mix together different

2 chemicals, mix together different biologicals and use them

3 as a cocktail. If, in fact, that happened, that would


4 explain some of the problems we have in identifying some

5 of these agents positively in suggesting the appropriate

6 therapies. Well, we are going to follow through on some


7 of these now and we are going to develop the tests

8 necessary to do this.

9 Now, I have heard -- in fact, I was under

10 criticism from people in the Pentagon. They indicated the


11 Iraqis didn't have the capability to weaponize mycoplasma

12 or to use it as an offensive weapon. And I disagree with

13 that. There was a very talented individual, Jawad Al-

14 Aubaidi, who was head of the mycoplasma unit. In fact, he


15 was a world-renowned mycoplasma expert.

16 He was trained at Plum Island in the United

17 States, which was our USDA isolation facility. He was


18 president of Al-Quadsia University and he was also the

19 founder of the University of Baghdad mycoplasma unit

20 approximately 20 years ago, so this is a unit that has

21 been very active in Baghdad for some time.


22 They also had a very large number of personnel








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1 for this unit, which is pretty surprising for a country

2 like Iraq unless they were going to use this for some

3 other use, such as chemical biological warfare.


4 My conclusions. We have identified invasive

5 mycoplasmas in approximately one-half of a nonscientific

6 selection of veterans of Desert Storm that have Gulf War


7 Illness using gene tracking and forensic PCR. Now,

8 although there has been a lot of argument that we are not

9 using scientific methods, basically we depend upon sick

10 soldiers and their -- sick veterans and their family


11 members to come to us.

12 We don't advertise. We don't charge anything

13 for a diagnosis. Like Dr. Hyman mentioned, this is all

14 done at no cost. It takes a tremendous amount of time and


15 effort to do this.

16 We feel that those soldiers that were on the

17 deep insertions into Iraq or under SCUD-B attacks seem to


18 have the most health problems. This is a theme that has

19 been repeated over and over again. You have heard this

20 over and over. SCUD attack. What you may not have heard

21 is that the Special Forces and other units that went deep


22 into Iraq had major problems. And we worked very closely,








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1 for example, with the Special Forces units, with the Delta

2 Force and so on, with their problems.

3 Most soldiers that display signs and symptoms


4 of Gulf War Illness within months after returning to the

5 U.S. -- and generally you have heard this is six months to

6 a year. And the symptoms are chronic and some symptoms


7 actually abate with time. Naturally, that is what you

8 might expect with a chronic infection.

9 However, when immediate family members present

10 with almost exactly the same symptoms, this suggests that


11 there is an active infection that is involved. And it

12 suggests that at least some forms of Gulf War Illness are

13 contagious and are being transmitted and this is probably

14 by an airborne method.


15 Now, the mycoplasmas are not what I would call

16 wildly contagious. They are only mildly contagious. And

17 so again, that is consistent with the slow onset of signs


18 and symptoms that you see in immediate family members.

19 Now, the immediate family members display similar symptoms

20 to the Gulf War Illness patients. And we have tested both

21 family members and the individual veteran or patient by


22 examining their leukocytes for the presence of mycoplasmal








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1 infections. They are also treated with the same

2 antibiotic regimen and they also recover similar to Gulf

3 War Illness veterans. So we think that they have the same


4 disease process and they got it through their close

5 interactions.

6 The antibiotics that we use to treat these


7 mycoplasmal infections -- doxycycline, ciprofloxacin,

8 zithromycin, and minocycline may not be the most effective

9 antibiotics for the types of infections we have found but

10 basically with mycoplasmas, you are quite limited in the


11 type of antibiotics you can use. And that may be one of

12 the problems in treating it. I realize that these are

13 also broad-spectrum antibiotics and these also may knock

14 down other types of infections as well.


15 The diagnostic tests for mycoplasmal infections

16 must be improved and streamlined for diagnostic laboratory

17 use. Basically, we are in a research setting and we use


18 very labor-intensive techniques that would never be useful

19 in a diagnostic laboratory setting. We had hoped to

20 improve these but the Army did not fund our grant.

21 A case-controlled study should be performed to


22 confirm the possible role of these mycoplasmal infections








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1 in Gulf War Illness and we had proposed to do a study with

2 the CDC on this. The DOD chose not to fund that study,

3 which was a case-controlled study. The CDC now still


4 wants to proceed. So we are finding -- we are going to

5 find another source for money to do this.

6 Basically, that is my story. And if those of


7 you on the committee by now haven't got the sense that

8 there might be some kind of a cover-up going on about this

9 whole operation, I have left a couple of documents with

10 you that I am not going to discuss.


11 One is a letter from Stephen Josephs where he

12 denied that mycoplasmas are a health problem. And of

13 course, I mentioned to you that that is completely

14 contradicted by instructors in the USUHS, the military


15 physicians; by Eileen Marty, who is Director of Infectious

16 Disease at the AFIP; and also that, in fact, we haven't

17 really found anything and we have had no follow-up.


18 I would suggest to you that we have done

19 follow-up on at least a small cohort of patients.

20 Obviously, these are not large numbers because we don't

21 have the money to do large numbers. We were criticized


22 for not running a case-controlled study but those of you








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1 that are in clinical research know that that takes quite a

2 bit of money and manpower to do.

3 We have done what we could on a very small


4 personnel budget. This came mainly from my chair, the

5 David Burton Chair, I would like to acknowledge for that

6 funding, and donors who donated money out of their pockets


7 to help us out with this program.

8 So we are doing what we can do. And I think a

9 lot of the criticism that has been leveled at people like

10 Dr. Hyman and myself are very ill-founded. We are working


11 essentially without any support, without any help from the

12 VA or the DOD. As a matter of fact, the VA has tried to

13 shut us down more than once through my own institution.

14 We have had an unbelievably difficult situation


15 to work under, very unusual for me. I was not used to all

16 of this shenanigans behind the scenes. So I hope that

17 this information has been useful and thank you for


18 inviting me back to present to the full committee.

19 DR. LANDRIGAN: Thank you very much. I know

20 you said at the beginning of your presentation that you

21 have enjoyed funding from the National Institutes of


22 Health. In fact --








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1 DR. NICOLSON: Correct.

2 DR. LANDRIGAN: -- you have several NIH grants

3 running at the present time. And so I would like to ask


4 you, have you sought funding from NIH -- I guess it would

5 be from the NIAID, specifically, to support some of this

6 work?


7 DR. NICOLSON: We are going to look into that,

8 actually. Because, in fact, we are doing a study -- a

9 small study with the Cheney Clinic in North Carolina and

10 also with a group in Redding, California to examine CFIDS


11 patients. We did a very tiny -- it is not even a -- I

12 wouldn't even call it an organized study. We just simply

13 got a few CFIDS patients together and blindedly tested

14 them for mycoplasmal infections. And we found a subset of


15 them had mycoplasmal infections.

16 Their primary care physicians were informed of

17 the results. They went on the same types of antibiotics


18 that we suggest for Gulf War Illness. They have recovered

19 now. Some of these patients were sick for 10 or 15 years.

20 Now, I am not suggesting that all CFIDS

21 patients have these chronic infections but I suggest to


22 you that there is probably a subset of CFIDS patients that








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1 have these chronic infections that can be helped immensely

2 by these types of diagnostic tests and advice to their

3 primary care physicians.


4 DR. LANDRIGAN: Yes. I mean, I don't think any

5 of us thinks that the NIH peer review system for awarding

6 grants is perfect but it is like what Winston Churchill


7 said about democracy. It may be imperfect but it is a

8 awful lot better than the alternative.

9 DR. NICOLSON: I am well familiar there. I was

10 a holder of an Outstanding Investigator award from the


11 National Cancer Institute. Those of you that know that

12 know that it is a very rare award, indeed, to get. I have

13 had approximately 30 years of continuous support from the

14 NIH and so I believe in the NIH.


15 I believe in their review system. I have been

16 chairman of some of their review committees. I believe in

17 that process. However, I do also have a U.S. Army grant.


18 I have also been a chairman of a U.S. Army review

19 committee so I know a little bit about their review

20 process.

21 But I do not believe that the review process


22 that they used for these Gulf War Illness grants are








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1 similar to what they did in the past, for example, for the

2 breast cancer program, which I am familiar with. That is,

3 nowhere have I heard where you have representative from


4 DOD, from VA, and from different sources to constitute a

5 review panel.

6 Normally, they go out and get a panel of


7 outside experts to make recommendations. And so it is a

8 very unusual process that they have used. You have heard

9 from Dr. Hyman. He has had a very difficult time getting

10 any funding at all. A lot of broken promises.


11 I am not going to even try and get DOD support

12 because when I put my last grant application in, I

13 mention -- I talked to a friend of mine at DOD. He said

14 that I was wasting my time, that that grant was DOA. It


15 was dead on arrival. They had no intention of funding it.

16 And in fact, when I got it back, not only did

17 they not give me a priority score for funding but they cut


18 the budget by 88 percent which meant that there was no

19 possible way that I could achieve any of the specific aims

20 of the grant on 12 percent of the budget that I put in.

21 It was just a joke, frankly.


22 DR. LASHOF: Can you tell me how you came to








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1 look at mycoplasma specifically? Had you looked for other

2 organisms first? This was not an area you had worked in

3 in the past.


4 DR. NICOLSON: No. As a matter of fact, I was

5 criticized because I am not a mycoplasma expert although

6 one of the co-investigators on the grant, Dr. Joel


7 Baseman, is a mycoplasma expert and we sought him out for

8 advice on this. And also one of the co-investigators of

9 my grant, Dr. Herbert DuPoint, is also an expert in

10 infectious disease and chairman of -- was chairman of


11 medicine at Baylor College of Medicine and head of the

12 infectious disease unit at Baylor College of Medicine. So

13 I did have a number of experts that I was collaborating

14 with.


15 Basically, we went through the medical

16 literature and tried to find out, were there any similar

17 diseases that had ever been reported in the medical


18 literature and what were the signs and symptoms and so on

19 and so forth. We started from that standpoint and then

20 started to test a number of possibilities in the

21 laboratory and hit upon mycoplasma.


22 DR. LASHOF: What other organisms did you look








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1 for?

2 DR. NICOLSON: Well, I am not going to go into

3 detail. We were looking at some of the common bacteria


4 and so on. And again, we are going to start now looking

5 at brucella, some of the other possible chronic illness-

6 causing types of bacteria.


7 Most people who look for bacteria look for

8 acute causing -- bacteria that cause acute illnesses and

9 these are not like that. You know, the whole type of the

10 illness, the whole clinical manifestations are not like an


11 acute bacterial infection at all.

12 So we were trying to look for penetrating

13 microorganisms, bacteria -- but penetrating inside cells

14 because, from my background, that would be most consistent


15 with an autoimmune dysfunction or disorder and also

16 causing some of these, what we call false autoimmune

17 symptoms that we see in many of the Gulf War Illness


18 patients.

19 Essentially, these false symptoms -- I call

20 them resolved upon antibiotic treatment but there is no

21 way that things like ALS, as you heard about this morning,


22 MS or something like that, will resolve upon antibody








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1 treatment. No way.

2 DR. LASHOF: How many of the spouses or family

3 members of the veterans that you have treated did you also


4 test and what percentage of those were positive? Do you

5 have data on that?

6 DR. NICOLSON: Well, I can't give you an exact


7 figure on that off the top of my head. Every week when we

8 contact -- when a patient comes to us, one of the first

9 things we do is to have them fill out a form. They have

10 to also fill out a blood disclosure form and this illness


11 survey form which, by the way, is 18 pages. And I gave a

12 copy.

13 It is very extensive. And I went over with an

14 epidemiologist, the format of that form before we ever


15 used it. And so it actually went through several hands

16 before it was actually -- before we decided on using it.

17 And we were very interested to know at that time was there


18 any indication that spouses or other family members had

19 similar symptoms.

20 And usually we would get the information at

21 that time because we -- quite frankly, we asked them.


22 That is one of the first things we asked. Is anyone else








294


1 in your family exhibiting the same or similar symptoms?

2 And if they are, we make sure to give them

3 enough forms so that every family member will fill it out.


4 On the basis of that form then, we can recommend that they

5 send in blood samples. Now, we haven't routinely been

6 taking everybody in the family but now we have, I think,


7 enough justification for doing that.

8 Basically, in the past we have only taken the

9 blood from symptomatic family members so it is not really

10 a controlled or carefully done study. As a matter of


11 fact, none of this, I would call, is a carefully done or

12 controlled study.

13 A lot of it is taking small groups, which is

14 all we can really do with the amount of funds we have


15 available and examining them and doing some follow-up on

16 it. This is all we can do right now.

17 MR. RIOS: Let me ask you. You stated that you


18 thought there was a -- that in your view, there is a

19 cover-up going on and we have heard that from different

20 sources. In your view, in your personal observation, what

21 is the driving force for this cover-up?


22 Is it different -- just a different medical








295


1 philosophy on how to approach this problem or is this

2 generals that are hiding something or -- in your view,

3 what is it?


4 DR. NICOLSON: I think it is generals that are

5 hiding something. I think you may have --

6 MR. RIOS: And they have basically gotten


7 together with the doctors and said, Look, we have --

8 DR. NICOLSON: Look, I can only speculate on

9 this. Anything I say is rank speculation. But we do have

10 some scientific evidence that similar microorganisms were


11 being tested in a vaccine program in the Texas Department

12 of Corrections before the Gulf War.

13 And you -- Sally Medley spoke here this

14 morning. We found a similar infection in some of her


15 people and her family. We also found a very unusual gene

16 present in the mycoplasma, the HIV-1 envelope gene but not

17 the entire HIV gene which may explain, as I mentioned


18 during my talk, why some of the veterans come up HIV-

19 positive. But when they are re-tested, they are not --

20 they don't have HIV.

21 It is on an antibody-based test. And we think


22 that the reason that some may come up positive if they do








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1 have this mycoplasma with the HIV-1 envelope gene, if it

2 is expressed and the mycoplasma expresses that envelope

3 gene, then they could theoretically come up positive on an


4 AIDS test.

5 And I think -- and I -- this is speculation but

6 I think quite strongly that the HIV-1 envelope gene may


7 have been put in the mycoplasma to weaponize it. This is

8 a perfect way to weaponize a microorganism and turn it

9 into a systemic disease. Why? Most mycoplasmal

10 infections are usually limited to the organ in which they


11 initially infect, for example, either urinary infection or

12 respiratory infection.

13 If, however, you have in it a receptor for the

14 CD-4 receptor on a -- carried by a variety of different


15 cells, you might be able to make that potential biologic

16 weapon systemic. And so that may have been what happened,

17 is this may have been part of the weaponization process.


18 And there may be other genes present that we don't know

19 anything about.

20 In fact, my wife stumbled across the HIV thing.

21 It was a control that we were running. You know, we were


22 running controls for various viruses and infections and








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1 everything and that cropped up. We started to investigate

2 it further. Started going gene by gene down the HIV

3 because we -- she happens to work on that.


4 And so we had the probes for it and found out

5 that it wasn't the polymerase gene. It wasn't the REV

6 gene. It wasn't the TAD gene. It wasn't the LTR. It was


7 the envelope gene and only the envelope gene. That is

8 very suspicious. Yes?

9 DR. LARSON: A couple of questions. Correct me

10 if I am wrong. I thought that the CDC had funded you for


11 doing some blinded analysis.

12 DR. NICOLSON: No.

13 DR. LARSON: No. Okay.

14 DR. NICOLSON: No. We are -- it is under


15 discussion but they don't have a grant mechanism in the

16 CDC. DR. LARSON: So they --

17 DR. NICOLSON: So we --


18 DR. LARSON: -- would like you to do it but

19 they don't have the funding.

20 DR. NICOLSON: They don't have a funding

21 mechanism to do it. In other words, they don't give


22 external grants. The only way they could do it is if we








298


1 entered into some kind of an agreement to test X number of

2 samples for X amount of money or whatever.

3 They do not have a budget to be able to do it


4 that way, to account for all this. So we may have to do

5 just a small little pilot study.

6 DR. LARSON: Okay.


7 DR. NICOLSON: Or we will fund it ourselves

8 internally. I am moving from the University of Texas to

9 the University of California. I previously was a

10 professor at the University of California. In 1980, I


11 moved to the University of Texas M.D. Anderson Cancer

12 Center to start a new unit to work on cancer invasion and

13 metastasis.

14 Well, I am now going back to the University of


15 California. I will be the director of the Institute for

16 Molecular Medicine at the University of California at

17 Irvine School of Medicine. This is a new institute. We


18 hope to have a unit in this institute that will cover the

19 molecular aspects of chronic diseases such as CFS.

20 DR. LARSON: And would you just discuss a

21 little bit how your hypotheses and work and findings


22 interrelate with Dr. Hyman's?








299


1 DR. NICOLSON: Well, basically my belief now I

2 am working on this, is that we are dealing with a

3 situation where there are probably multiple infections


4 involved. Both of us have probably been using enough of

5 the broad-spectrum antibiotics so we are probably knocking

6 down multiple infections with the antibiotic treatment.


7 That is a hypothesis at this point. We are

8 going to actually test that. The next organism we are

9 going to look at is brucella. Why brucella? Well,

10 brucella is a very important pathogen in the biological


11 warfare programs of a variety of countries, including the

12 United States, Russia, even Iraq. So we are going to test

13 for that next.

14 DR. LARSON: It is also a chronic disease in


15 the Middle East.

16 DR. NICOLSON: It is also a chronic disease in

17 the Middle East. But what we will also be looking for is


18 some of these unusual genes that may have been used to

19 weaponize it. So we are not just looking for chronic

20 infections. We will also be looking deeper.

21 Now, I have been put under certain restrictions


22 at my institution because I work at a cancer institution.








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1 I am not allowed to isolate any of these possible vectors

2 or organisms so I had to agree to that before allowing me

3 to continue on this work.


4 That restriction won't apply when I move so we

5 may be able to, in fact, isolate it and replicate the

6 disease in animals which would be fulfilling Cox'


7 postulate, in a way. We are trying to look at setting up

8 an animal model but we can't do it at the M.D. Anderson

9 Cancer Center.

10 So I have been placed under a number of


11 restrictions at M.D. Anderson that I don't like. It has

12 really restricted our academic freedom quite significantly

13 and that is going to change.

14 DR. LASHOF: Is that one of the reasons you are


15 moving?

16 DR. NICOLSON: Yes, it is.

17 DR. LANDRIGAN: Other questions? I just had to


18 step out there for a second. Excuse me.

19 DR. NICOLSON: Beg your pardon?

20 DR. LANDRIGAN: Excuse me. I just had to step

21 away for a moment. Any other questions? Okay. Well,


22 thank you, Dr. Nicolson. That was a fine presentation.








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1 We are now ten minutes from adjournment. Are there any

2 comments that any members of the committee would like to

3 make?


4 We do have one member of the public who has

5 asked -- one further member of the public who has asked to

6 make some remarks but I want to make sure first that


7 nobody in the panel has anything to say because it was

8 scheduled for panel discussion at this point.

9 If there is nothing from the panel, and I see

10 that there is not, let me -- if Ms. Sandy -- Ms. or Mr., I


11 am not sure -- Sandy Gragg is still here? Ms., yes. If

12 you could come forward. Please do keep it brief because

13 we want to wrap it up on time but we would love to hear

14 from you.


15 MS. GRAGG: My name is Sandy Gragg. I served

16 with the 93rd Evac Hospital in Saudi Arabia. And prior to

17 going to Saudi, I was -- I felt like I was too young to be


18 in my body, if that makes sense. I felt like I was too

19 young to be out of high school, that I had three kids.

20 I was very active, very energetic. My

21 memory -- like, when I went to nursing school -- I am a


22 nurse -- I never once studied. All my friends had to








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1 study but I could just read something over and I could

2 remember it word for word when it came to test time.

3 Since I have returned from Saudi -- oh, in


4 Saudi we were first at a place called Cement City which is

5 where we first started taking the little white pills that

6 they gave us. And when I was at Cement City I was part of


7 the rear detachment because I was one of the drivers for

8 one of our five-tone trucks.

9 And we were outside. And I was showing some

10 people who just came to our unit, you know, because they


11 had missed the main body. I was showing them, you know,

12 where the facilities were. And the guy was standing there

13 looking up and I asked him what he was doing.

14 And he was watching a SCUD come over. So I


15 told him to mask. Said a few choice words to him and we

16 masked and put on our thing. And as we were seeking

17 cover, less than probably from here to where the stairs


18 are out here, a Patriot intercepted the SCUD.

19 And he was saying he had a fine mist come down

20 on him? We had nothing like that. What we had on our

21 uniforms was burnt holes. In our mess tent, we had


22 humongous burnt holes. Right. We had no chemical








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1 reaction on our skin, no itching, none of that. Right.

2 And you just kind of blow it off because they

3 were saying nothing was coming in the SCUD but because we


4 was rear detachment, our main body quit taking the little

5 white pills but because we were rear detachment, we took

6 them an extra three weeks longer than what our main body


7 did. So we actually took them longer than almost anybody

8 else in the Army, from what I understand.

9 When we got to our main base, I had a

10 hemorrhagic cyst which I, you know -- an ovarian cyst that


11 ruptured. So they put me in the hospital. And during

12 this time when I was in the hospital, they came to our

13 unit and gave us the anthrax shots.

14 It was documented everywhere that I did have


15 this. They kept wanting to operate on me. But I kept --

16 I had been in this unit for five years. I was active

17 Army. And I kept saying, No, no, no, no. So finally it


18 stopped bleeding but during this time they came and gave

19 me the anthrax shot.

20 All I asked them is, I don't mind taking the

21 shot if that is what you say we have to do but I want it


22 documented. I had my shot record right there. They said,








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1 No. This will not be documented anywhere.

2 And I go, Then I don't want the shot.

3 And my orders were, Sgt. Gragg, you will take


4 this shot either on your own or I will order you to take

5 this shot and we will physically hold you in order to give

6 you this shot.


7 So you had no options. As for the little white

8 pills, when we started taking those, I had a lot of

9 reactions to them. I had the photosensitive to the light.

10 I had muscle twitching. You could sit there and see my


11 muscles twitching. Severe headaches.

12 And because I had reactions and went to the

13 doctor, you know, because I didn't -- me, I always

14 rationalized things. If you are a nurse or a doctor and


15 you are sick, you rationalize what is wrong with you. You

16 don't say, Oh, well, this is causing it. You say, Well, I

17 am just tired, or, You know, I just have a sinus infection


18 so it is bothering my eyes.

19 But because I had gone to the doctor and he

20 said that that is why I was sick was because I was taking

21 these pills, my sergeant physically watched me take them


22 every time, where some people, they would quit taking








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1 them. But I was physically watched every single time for,

2 like, six weeks in taking these pills.

3 So for six weeks I took these pills three or


4 four times -- I think it was three times a day we took

5 them. But since I returned from Saudi -- we moved to San

6 Antonio in August of, I guess, '91. At that time, I was


7 sick. I could already feel a difference in me.

8 I was gaining weight. I gained 40 pounds in

9 less than four months. And at this time, I was doing

10 triple exercising. I was exercising with the remedial PT


11 just because I was gaining this weight. I was exercising

12 on my own. I was exercising -- all this stuff. I wrote

13 down everything I ate.

14 And I went to the doctor and I told him,


15 Something is wrong. I quit having menstrual periods.

16 The only time I ever missed a period in my life

17 was when I was pregnant. I felt terrible. I was sick all


18 the time. You had no energy. And when I went to the

19 doctor at Fort Sam Houston, what the doctor told me -- I

20 was 32 years old -- he goes, You have OWS.

21 And I go, What is OWS? And he told me, Old


22 woman syndrome. I told him I was 32 years old. My mother








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1 still had periods, you know. You don't quit having

2 periods. You don't start going through menopause at 32

3 years old if it is not a family history. You don't --


4 After months of arguing with him, I would go on

5 sick call every week because I told him, I don't know what

6 is wrong but something is wrong.


7 Then when the documentation came out that

8 something was wrong with the Desert Storm veterans, my

9 medical records -- because it had not been in the San

10 Antonio paper yet. My mom sent this to me from out of


11 state.

12 I took them to the Army doctors and I just left

13 him a note, Could this be what is wrong with me?

14 And I highlighted all the similar things. And


15 my medical records disappeared until the day I ETS'd out

16 of the Army. The day I ETS'd, all of a sudden, out of

17 nowhere, here is medical records that I haven't seen in


18 two years. They come up, forward.

19 Since I have been -- we made a list. When I

20 got out of the military, I made a list of everything that

21 was wrong. Not because I thought they would do anything


22 but in case something happened like Agent Orange that my








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1 kids would be taken care of.

2 I listed -- and this was back in '92 or '93. I

3 can't remember. I listed the memory loss. I listed -- I


4 have had blood in my urine ever since I returned from

5 Saudi. It is nothing you can see. It is all microscopic.

6 And they can't find any reasons.


7 They have done hundreds of tests. They -- I

8 have got a -- I have had a chronic cough. And then here

9 the last two years, I have developed asthma. And what

10 that doctor told me was that the chronic cough was more


11 than likely asthma all this time but I didn't know.

12 My memory loss is horrible. I am an ICU nurse.

13 DR. LANDRIGAN: One minute, please.

14 MS. GRAGG: Yes, sir?


15 DR. LANDRIGAN: One minute, ma'am.

16 MS. GRAGG: Oh, one minute. I am an ICU nurse.

17 My memory is terrible. I have to write things down, pages


18 and pages and pages of notes. I have already told my

19 husband that after this, this time I am -- after this --

20 within -- by spring, I am quitting nursing because I will

21 not be an unsafe nurse.


22 But my question for you all are, what are you








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1 going to do to help my children? If I am physically

2 unable to work because of serving in the Gulf, you know, I

3 won't qualify for Social Security. When I say something


4 to the VA, all they can say is that, You have filed for

5 compensation.

6 But, you know, that was months and months ago.


7 And all you get is a letter every month. And I don't want

8 the compensation. I want to know what is wrong and what

9 you all are going to do for my children when I cannot

10 work. Who is going to pay their bills? Who is going to


11 buy their groceries? Is the government going to help us

12 at that point?

13 DR. LANDRIGAN: Thank you.

14 VOICE FROM AUDIENCE: [unintelligible]


15 MS. GRAGG: Exactly. I mean, that is my point,

16 you know. What are you going to do? Are my kids going to

17 lose their home? Are we going to be on the street because


18 nobody is going to help us because we went to Desert

19 Storm? And it is not just me, it is all the veterans.

20 Or is it -- you know, what are they going to do

21 for us? What -- you know, are my kids going to end up out


22 on the street like all these other homeless people?








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1 Because my husband -- I make three times a year what my

2 husband makes.

3 But I will not be an unsafe nurse. I will not


4 risk my patients' lives in jeopardy. If you had somebody

5 in an intensive care unit, would you want a nurse who did

6 not know -- could not remember meds that she has given for


7 17 years, what those medications were all of a sudden?

8 Could you -- would you want a nurse that could

9 not remember if she gave a medicine or didn't? I write

10 down everything I do. I tell my charge nurses hundreds of


11 things every single day because I want to make sure I tell

12 somebody. All my coworkers come over and double-check me,

13 not because I am not a great nurse but because they don't

14 want me to make that mistake either.


15 DR. LANDRIGAN: That is very important. Yes.

16 You have got to get it right when you are working in the

17 ICU.


18 MS. GRAGG: That is right. And you know,

19 someone says, Well, you know, when you quit that you can

20 work at McDonald's.

21 You know, you are chronically fatigued. All my


22 entire life I have never wanted to be anything but a nurse








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1 from the time I was two years old. I have never wanted to

2 be anything. And the only reason I am in nursing is, I am

3 a patient advocate. I am for my patients.


4 And that is what drives me to get up every day.

5 That is what drives me to go to work every day, is to take

6 care of those patients. But you know, you push yourself


7 farther for things like that. Because I hate nurses that

8 are in it for the money. They are not in it for the

9 patients. And I am not one of those nurses and I hate

10 nurses that are.


11 But if you go to do something, if you are

12 suddenly from a lawyer or a doctor and they say, Okay.

13 You can go to McDonald's and work because you are no

14 longer mentally capable of working as a nurse or you are


15 no longer mentally capable of working as a doctor, are you

16 going to have the same drive to go to McDonald's every day

17 and do a job for $5 an hour that you have been doing and


18 you make $20 an hour at or $30 an hour at?

19 Are you going to be able to force yourself to

20 get up out of bed and go do that? And $5 an hour is not

21 going to pay your bills.


22 DR. LANDRIGAN: It is not, ma'am. No. Thank








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1 you very much.

2 MS. GRAGG: Thank you.

3 DR. LANDRIGAN: Okay. Well, we have now come


4 to the end of a long but, I think, very interesting day.

5 I really appreciate all the members of the public who have

6 come forward, the veterans and their families. Appreciate


7 the doctors, some of whom have come long distances to

8 testify before us.

9 I have got two announcements to make. First of

10 all, there is a meeting of our full committee in my


11 hometown of Boston on March 26. And secondly, there is

12 another meeting of the panel which is considering clinical

13 syndromes which is scheduled to take place in Atlanta in

14 mid-April. I guess the exact date is not yet determined


15 but it will be made public and it will be announced in the

16 Federal Register just as was done today.

17 Letters will be sent out to the news media.


18 Letters will be sent out to the people on the mailing list

19 informing those who are interested of the exact date of

20 the meeting in Atlanta. Any final comments from the

21 members of the panel? Mr. Rios, a native of San Antonio.


22 MR. RIOS: Just want to assure the veterans








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1 that are here -- I am a veteran myself -- that we on the

2 committee are, I think, objective and we are going to do

3 everything humanly possible we can to make sure that the


4 government is there for the veterans just the way that you

5 were there for our government when we needed you.

6 Thank you for being here.


7 DR. LANDRIGAN: Thank you. Thank you very

8 much. And I declare this meeting adjourned.

9 (Whereupon, at 4:40 p.m., the meeting was

10 concluded.)