TRANSCRIPTS DOCUMENT
NOTE: UNEDITED DOCUMENT
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UNITED STATES OF AMERICA


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PRESIDENTIAL ADVISORY COMMITTEE

ON GULF WAR VETERANS' ILLNESSES



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MEETING

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Tuesday, March 26, 1996


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The Committee met at Parker House, 60
School Street, Boston, Massachusetts at 8:35 a.m.,
Joyce C. Lashof, M.D., Chair, presiding.


Committee Members Present:

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

Arthur L. Caplan, Ph.D.


Admiral Donald Custis, M.D. (Ret.)

Major Marguerite Knox, R.N.C., M.N., C.C.R.N.

Andrea Kidd Taylor, Dr. P.H.

Also Present:


Robyn Nishimi, Staff

Jonathan Foster, Designated Federal Official



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INDEX


SPEAKERS: PAGE:

Joyce C. Lashof, M.D. 3

Lt. Col. Robert Wolfertz 4

Judy Scotnicki 11


Dolly Lymburner 17

SFC Stephen McGarry 24

Cecilia Mason 28


Christopher Dawer 34

Craig Stead 40

MSG Joseph Sturniolo 48

Victor Gordon, M.D. 54


MSG Leon Dodd 61

Edward Bryan 64

Diane Dulka 70


John Chestna 78

Laurance McInnis 81

Robert F. Lawson 87

Discussion of Clinical Syndrome Panel Meeting 89


Boston Environmental Hazard Group Discussion 101

East Orange Environmental Hazards Research 149

Portland Environmental Hazards Research Center 186


VA National Customer Feedback Center 219



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


2 (8:35 a.m.)

3 MR. FOSTER: Good morning.

4 My name is Jonathan Foster. I'm from the

5 White House Office of Science and Technology Policy.


6 I am the Designated Federal Official for today's

7 meeting of the Presidential Advisory Committee on Gulf

8 War Veterans' Illnesses.


9 And without further ado let me declare the

10 meeting is open and turn it over to the Chairwoman of

11 the committee, Dr. Joyce Lashof.

12 CHAIRWOMAN LASHOF: Thank you very much.


13 We will be proceeding first with the open

14 public comment, that is, as our -- as we always do at

15 these meetings, and we have a number of people who


16 have asked to testify. Each person will have ten

17 minutes, five minutes for presentation and five

18 minutes for questioning, and unfortunately we have to

19 be pretty rigid and stick very much to that schedule,


20 but everyone knows that they can submit additional

21 testimony both today and after the meeting if they

22 wish.


23 I will signal at the end of the five

24 minutes and we'll work hard to keep us on schedule.

25 We will start with Lieutenant Colonel Bob



4

1 Wolfertz. Is he here?


2 COLONEL WOLFERTZ: Here.

3 CHAIRWOMAN LASHOF: Would you come

4 forward, if you want to go to the podium.

5 (Pause.)


6 Go right ahead.

7 COLONEL WOLFERTZ: Thank you for allowing

8 me this opportunity to speak about my experiences in


9 the Persian Gulf War as they relate to a series of

10 ailments known collectively as Persian Gulf Syndrome,

11 PGS.

12 I understand your investigation is aimed


13 primarily at the possible environmental causes of PGS.

14 I will address environmental issues as well as some

15 other possibilities which may be germane.


16 I volunteered to serve in Operation Desert

17 Shield leaving my duty station in Hawaii on August

18 24th, 1990, and arriving in Dhahran, Saudi Arabia, two

19 nights later. My initial assignment was to assist in


20 coordinating the off-load of the Marine Corps'

21 maritime prepositioning ships at the Port of Al

22 Jubayl, about sixty miles north of Dhahran.


23 The heat and humidity were intense, with

24 temperatures sometimes reaching into the low 120's.

25 We drank large quantities of bottled water provided by



5

1 the Saudis. The acclimatization process was slow and


2 long.

3 Once the MPS ship off-load was complete,

4 I moved to oversee the establishment of a combined

5 air/ground camp for U. S. Marine forces at a Saudi


6 Marine Corps base about fifteen miles south of Al

7 Jubayl. Sanitation conditions were not great but we

8 were eventually able to take showers with water from


9 the Persian Gulf purified by our own reverse osmosis

10 water purification units.

11 Periodically the Saudi Marines drove a

12 truck through our compound unannounced spraying a


13 chemical fog for insect control.

14 I spent two or three days a week north at

15 Al Saffaniyah where our initial four defenses were


16 established. On one occasion I acquired a severe case

17 of diarrhea, as did many other Marines, apparently

18 from a tainted chicken dish prepared at the First

19 Marine Division Field Kitchen.


20 In early 1991 I was assigned to serve as

21 the Executive Officer for the 4th Marine Infantry

22 Regimen initially occupying defensive positions


23 astride the Coastal Highway north of Al Mishab, Saudi

24 Arabia. While there, I experienced a severe athlete's

25 foot-like rash on my right foot. I'd never



6

1 experienced athlete's foot before despite many years


2 of participation in organized sports.

3 Operation Desert Storm kicked off in mid-

4 January with the air campaign against Iraq. As my

5 regimen prepared for eventual ground combat, I made


6 several reconnaissance trips to the Saudi-Kuwaiti

7 border scouting for future command post sites for the

8 regimental headquarters. During those ventures I


9 noted piles of dead animals, mostly goats, sometimes

10 camels, at various locations. Strangely, there was an

11 absence of flies or bugs around these carrion heaps.

12 Sometime in early February we received


13 anthrax vaccinations and began a daily dosage of

14 pyridostigmine bromide tablets as preventive medicines

15 for chemical and biological warfare. The Navy doctors


16 explained that these precautions were not approved by

17 the FDA for use in a preventive medicine capacity but

18 that they were safe.

19 The doctors also warned that one possible


20 side effect was kidney problems. We were told to stop

21 taking the tablets if we began experiencing lower back

22 pain.


23 When it came time to commit ground forces

24 to combat the 4th Marines was tasked with attacking

25 into Kuwait west of the Al Wafrah oil fields two days



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1 before the official start of the ground offensive. We


2 were given the mission of breaching a section of the

3 Iraqi mine fields and obstacle belt and to provide

4 security for the 1st Marine Division's follow-on

5 mechanized armored assault. After exchanging fire


6 with the Iraqis we began receiving large numbers of

7 EPW's.

8 The 4th Marine's attack into Kuwait


9 brought us within close proximity of the burning Al

10 Wafrah and Um Gadair oil fields. On one occasion the

11 expanding cloud of thick, black smoke turned day to

12 night well before sunset. Several days later it


13 rained bringing specks of oil down with the raindrops

14 so that it literally rained oil for most of the day.

15 Our subsequent attack to seize the Al


16 Jubayl Airport from the Iraqis was interrupted by a

17 chemical alert from the German FOCHS vehicle traveling

18 with us with its state-of-the-art chemical/biological

19 detection system. We went to full mission-oriented


20 protective posture for a couple of hours before the

21 all clear was sounded. After the war ended we passed

22 through the area where the gas had been detected.


23 On the morning of February 28th I awoke

24 with a stabbing pain in my lower back. Fearing the

25 negative side-effect of the pyridostigmine bromide



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1 tablets as warned by the doctors, I stopped taking the


2 pills, but the pain persisted, and finally back in

3 Saudi Arabia in early March I was seen by a doctor.

4 He was unable to tell me what was wrong, suggesting

5 that maybe it was a strain.


6 The pain eventually subsided, then flared

7 up again after I returned to my duty station in

8 Hawaii. It subsided again until after my retirement


9 in July 1991 when I had the pain for several months.

10 Over the course of the next year I began having

11 chronic headaches and fatigue, severe pain in my right

12 elbow, a regularly recurring infection on my right


13 eyelid, spots and rashes on my hands, arms and legs.

14 The rash on my right foot returned frequently. I

15 found myself always clearing my throat.


16 I reported these symptoms to the VA

17 Hospital in Manchester, New Hampshire, and was

18 subsequently diagnosed by Dr. Victor Gordon as having

19 Persian Gulf Syndrome.


20 Over the past four years I've experienced

21 significant pain in my elbow, left knee, and currently

22 my right shoulder. Fatigue remains a problem, maybe


23 because of poor sleep due to the joint pain. I still

24 clear my throat frequently, and the spots and rashes

25 come and go.



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1 Since taking doxycycline for a month early


2 this year, the eye infection and foot rash have not

3 recurred.

4 The constraints of a five-minute time

5 limit have forced me to shotgun a lot of information


6 in your direction. May I clarify any of it for you?

7 CHAIRWOMAN LASHOF: Thank you very much.

8 Are there questions from the Committee?


9 DR. TAYLOR: I'd like to ask just one.

10 Can you -- you mentioned a lot of dead

11 animals and other environmental exposures that you

12 had. Is there any one that you think might stand out


13 in -- or during the Gulf War?

14 COLONEL WOLFERTZ: The one that's clearest

15 in my mind is a pile of dead camels. Again, I would


16 have thought that ---

17 DR. TAYLOR: Attributed to possibly

18 chemical ---

19 COLONEL WOLFERTZ: I have no idea why they


20 were there or how long they'd been there. No, I don't

21 know.

22 CHAIRWOMAN LASHOF: Dr. Custis?


23 DR. CUSTIS: Did you have a diagnostic

24 workup when you reported to the VA?

25 COLONEL WOLFERTZ: Yes, I did.



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1 DR. CUSTIS: And they gave you nothing in


2 the way of result?

3 COLONEL WOLFERTZ: I spoke with Dr. Gordon

4 about the results of some of the tests. Most of them

5 didn't show anything conclusive.


6 DR. CUSTIS: Specifically did they have

7 anything to say about your urinary tract, your

8 kidneys?


9 COLONEL WOLFERTZ: No.

10 DR. CUSTIS: You indicated that you had

11 started on doxycycline. How long ago did you go on

12 that and how long did you take it?


13 COLONEL WOLFERTZ: That was -- I saw Dr.

14 Gordon, I believe it was the 9th of January, and I

15 took the doxycycline for a month.


16 DR. CUSTIS: And was that prescribed by

17 Dr. Gordon?

18 COLONEL WOLFERTZ: Yes, it was.

19 DR. CUSTIS: I see. And since you've


20 completed that course what has your symptomatology

21 been?

22 COLONEL WOLFERTZ: I have not -- the


23 infection on my right eyelid used to come about every

24 two to three to four weeks on a regular basis. I have

25 not had that since. And the rash on my foot, about



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1 the same cycle. I haven't had that since.


2 DR. CUSTIS: What about the joint pains

3 and ---

4 COLONEL WOLFERTZ: I -- at this time -- I

5 am unable to practice Little League baseball with my


6 two sons because I can't throw the ball right now

7 because of the pain in my right shoulder. It seems to

8 -- it travels, the joint pain.


9 DR. CUSTIS: And the fatigue, is that

10 still a problem?

11 COLONEL WOLFERTZ: That's ongoing.

12 DR. CUSTIS: Are you working full time


13 now?

14 COLONEL WOLFERTZ: I am. I'm a property

15 manager for the Church of Jesus Christ Latter Day


16 Saints.

17 DR. CUSTIS: Thank you very much.

18 CHAIRWOMAN LASHOF: Marguerite, do you

19 have any questions?


20 MAJOR KNOX: No.

21 CHAIRWOMAN LASHOF: Thank you very much.

22 We appreciate your testimony.


23 COLONEL WOLFERTZ: You're welcome. Thank

24 you.

25 CHAIRWOMAN LASHOF: Next one is Judy



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1 Scotnicki.


2 MS. SCOTNICKI: Thank you for giving me

3 this opportunity to be here this morning, and I hope

4 you'll be patient if I cough and I won't lose my

5 seconds of my five minutes.


6 As a citizen living in Concord,

7 Massachusetts, who began researching depleted uranium,

8 DU, almost seven years ago, the main motivation for my


9 doing this work was for my concern for my own and

10 other's children. My concern is related to health

11 risk from escaping airborne radioactive particulate

12 because I live a mile-and-a-half from a manufacturer


13 of depleted uranium products, including the depleted

14 uranium penetrator.

15 The depleted uranium penetrator was first


16 used in warfare during the Gulf War. Hundreds of tons

17 of depleted uranium were fired during the Gulf War.

18 Fourteen hundred Iraqi tanks were destroyed by

19 depleted uranium penetrators, as well as numerous


20 vehicles and other equipment. It has been reported

21 four out of five Gulf veterans entered depleted

22 uranium contaminated tanks and vehicles. This means


23 a large number of Gulf veterans could have breathed

24 depleted uranium.

25 The most serious health risk from



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1 particulated depleted uranium are through inhalation


2 and ingestion. Depleted uranium is highly toxic from

3 a radiological and chemical standpoint.

4 I am here before this Advisory Committee

5 today because of my concern both for the Gulf veterans


6 and their children. I also am concerned about the

7 possible connection between depleted uranium and the

8 severe health effects of some of the children born to


9 Gulf veterans, as well as Iraqi children.

10 Two doctors who have gone to post-war Iraq

11 and have raised the possibility that depleted uranium

12 may be killing Iraqi children are Dr. Eric Hoskins and


13 Dr. Segorth Gunther. Dr. Gunther is an epidemiologist

14 and head of the International Yellow Cross. He has

15 made several trips to Iraq every year since 1991. He


16 attributes fallout from depleted uranium to death and

17 radiation sickness among Iraqi children. He observed

18 a high rate of death and illness in southern Iraq

19 where many of these children had collected spent


20 depleted uranium shells left in the desert from the

21 Gulf War.

22 Dr. Eric Hoskins, a Canadian public health


23 specialist, was medical coordinator for a Harvard

24 University health team that went to post-war Iraq. He

25 has recommended that epidemiologists examine the



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1 connection between depleted uranium and cancer.


2 As Dr. Hoskins notes, the health risks

3 from depleted uranium become much greater after a

4 depleted uranium projectile has been fired. Fired

5 shells release airborne uranium particles that can


6 enter the body easily. This uranium then deposits

7 itself in bones, organs and cells. If depleted

8 uranium is in the organs of Gulf veterans, this could


9 potentially affect their children born after their

10 return from the Gulf War.

11 I have found in my years of research and

12 educational work on depleted uranium that there are


13 not many doctors or scientists who know very much

14 about depleted uranium. This is why it is important -

15 - and I urge the Committee to do this -- to be open to


16 learning more about this form of uranium.

17 Repeatedly I'm asked questions, such as,

18 "Is depleted uranium radioactive?" Or, "Isn't

19 depleted uranium like natural occurring uranium?"


20 Yes, depleted uranium is radioactive, and no, it's not

21 like natural occurring uranium. Natural occurring

22 uranium is highly dilute in nature, locked up in


23 minerals in non-metallic form, not easily subject to

24 chemical action; whereas depleted uranium always

25 occurs in highly concentrated form, chemically



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1 available for uptake in biological systems.


2 The radioactivity of depleted uranium is

3 relevant, not only because it is more than ninety-nine

4 percent uranium 238, an alpha emitter, but also

5 because the uranium 238 is always accompanied by its


6 decay progeny, thorium 234 and protactinium 234.

7 The continuous penetrating radiation by

8 beta particles and gamma rays of these depleted


9 uranium decay products must be considered in cancer

10 risk and genetic damage.

11 In Concord, Massachusetts, where I live,

12 there is worry about health risks from the production


13 of the depleted uranium penetrator in our community

14 where Nuclear Metals, Inc., NMI, has been

15 manufacturing uranium products for thirty-seven years.


16 Nuclear Metals has refused to make public air

17 emissions data from its stacks for the first twenty-

18 four years of the company's operation.

19 My organization, Citizens Research and


20 Environmental Watch, through its own research and that

21 of its commissioned experts, has found high levels of

22 depleted uranium, 18.9 times background, in soil


23 nearly a mile east from the company site. This means

24 depleted uranium has escaped in the past from Nuclear

25 Metals, Inc.'s stacks and been deposited in the soil.



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1 Teledyne Isotopes of Westwood, New Jersey,


2 did the soil analysis. Harvard University

3 subsequently confirmed the DU finding. Crew and their

4 experts have never said Nuclear Metals, Inc., is the

5 cause of higher cancers in Concord. Certainly many of


6 us wonder if this is an environmental connection.

7 I personally have heard Dr. Richard Clapp,

8 the first Director of the Massachusetts Cancer


9 Registry, say that citizens in Concord should be

10 concerned about high cancer rates. Based on Mass.

11 Cancer Registry data for the years 1982, '86, male

12 leukemia in Concord was one of the highest in the


13 state, and double the state average. Review of Mass.

14 Cancer Registry's data, including up to 1990, finds

15 Concord had a high incidence of six types of cancer


16 relative to state averages. They are breast cancer,

17 skin melanoma, testicular cancer, brain and central

18 nervous system cancers, multiple myeloma and thyroid

19 cancer. Thyroid cancer was the second highest in the


20 state, nearly two-and-a-half times the state average.

21 While the reason for the high incidence of

22 these cancers is not known, according to the


23 Massachusetts Cancer Registry report, ionizing

24 radiation is among the risk factors for all these

25 cancers except testicular cancer.



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1 Certainly I and other citizens as well as


2 veterans potentially affected by DU are convinced that

3 research must be done to examine the connection

4 between depleted uranium and cancer, other health

5 effects and genetic effects around the depleted


6 uranium processing, manufacturing and testing sites,

7 including long-term health studies of depleted uranium

8 workers and their children and Gulf veterans exposed


9 to depleted uranium and their children conceived after

10 the Gulf War.

11 Thank you very much.

12 CHAIRWOMAN LASHOF: Thank you.


13 Are there questions?

14 The only question I have is you have

15 gotten involved and interested and you have a citizens


16 group working on this because of the plant near you.

17 Do you have any -- have you had any contact with any

18 of the Gulf War veterans' groups and do you have any

19 information related to actual exposure to depleted


20 uranium?

21 MS. SCOTNICKI: Yes. I work with some of

22 the Gulf War veterans' groups in the country through


23 the National Citizen Depleted Uranium Network which is

24 part of the military toxics project. My husband was

25 a Vietnam veteran and so one reason I am very



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1 concerned about this issue is because I know what it's


2 like to be a veteran's wife and also we have children

3 and we're -- my husband potentially was exposed to

4 Agent Orange in Vietnam and then to come and move into

5 a community when he finally got back from his last


6 tour from Vietnam and find that there was another risk

7 related to military involvement of our country and

8 this weapon was, I can tell you, very unnerving, and


9 that has been part of the impetus in the work that I

10 do.

11 CHAIRWOMAN LASHOF: I see. Thank you.

12 MS. SCOTNICKI: Thank you.


13 CHAIRWOMAN LASHOF: Thank you very much

14 for your testimony.

15 MS. SCOTNICKI: And I'll provide copies to


16 Mr. Ewing of my statement.

17 CHAIRWOMAN LASHOF: Good. Fine. Thank

18 you.

19 Dolly Lymburner?


20 MS. LYMBURNER: You are very good with

21 names. No one ever gets mine right.

22 I'm on staff at the Military Toxics


23 Project, currently working as an organizer for the

24 Depleted Uranium Citizens Network. And I want to

25 thank the members of the President's Advisory



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1 Committee for allowing me this opportunity to offer


2 testimony and recommendations.

3 The Military Toxics Project is a national

4 non-profit environmental organization whose members

5 are people who have been affected by the military's


6 use of toxics. The Depleted Uranium Citizens Network

7 which Judy spoke about is made up of citizens' groups

8 and individuals living near or working at DU weapons


9 development sites, manufacturing facilities, testing

10 sites, and also veterans of the Persian Gulf War and

11 atomic veterans.

12 The Army Environmental Policy Institute,


13 AEPI, in response to a Congressional request, prepared

14 a report entitled "Health and Environmental

15 Consequences of Depleted Uranium Use in the U. S.


16 Army." The Depleted Uranium Citizens Network

17 critiqued that report with our response entitled

18 "Radioactive Battlefields of the 1990s," which I'm

19 presenting to you today. I've given copies for all


20 the members of the committee also and have brought

21 with me today two copies of the AEPI report, a 200-

22 page report. So, if everyone needs a copy I'm sure


23 the staff will make copies for you.

24 We have a few additional points which we

25 didn't include in this original report that I'd like



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1 to make to you today.


2 Number 1, AEPI states within the first

3 three pages of its report in its introduction that the

4 Army has not pursued recommended health and

5 environmental studies, and that there is not adequate


6 medical or exposure information to defend the

7 assertion of no significant health effects from

8 depleted uranium.


9 In using the argument that DU, depleted

10 uranium weapons use is justified because of the

11 protection that it gave our troops, as they do on page

12 76 of their report, we could excuse the use of any


13 weapon, why don't we use our arsenal of atomic bombs,

14 or continue the use of such herbicides as Agent

15 Orange? Why not continue to use nerve gas, mustard


16 gas, et cetera, instead of entering into treaties to

17 discontinue the use of those chemical agents because

18 there is a greater picture to consider, that of our

19 responsibility to the health of our troops using those


20 weapons and to humanity at large.

21 I won't even get into the health effects

22 now being suffered by Iraqi children which Judy did


23 touch on, but those health effects should be

24 investigated in our search for the truth behind

25 Persian Gulf veterans' illnesses and the birth defects



21

1 suffered by their children.


2 Number 3, we disagree with the report's

3 assertion on the effects of low level radiation as

4 they do on page 102 and 103.

5 Number 4, we do agree with the training


6 recommendations that were made in the AEPI report as

7 they do in section 65.

8 Although several of our members have given


9 both written and oral testimony on depleted uranium

10 and its health effects, we were disappointed in that

11 this committee's interim report made little, almost no

12 comment on the issue. We sincerely hope that this


13 will be corrected in the final report.

14 As a part of that process, a panel should

15 be convened that would deal specifically with depleted


16 uranium, such as those which you have had on clinical

17 issues, epidemiological research and drugs and

18 vaccines, and the upcoming panel on chemical and

19 biological agents. We would be happy to assist the


20 committee with names of people who might be helpful

21 for you to interview.

22 The many possible pathways of exposure and


23 contamination of troops has not been fully looked

24 into. Depleted uranium after impact and oxidation

25 becomes aerosolized particles. The Persian Gulf area



22

1 with its desert sands stirred up by the movement of


2 troops and their equipment, tanks, trucks,

3 helicopters, created a storm of DU particles. Crews

4 firing DU munitions were subjected to the backfire of

5 DU particles. Troops doing recovery of tanks or


6 entering enemy tanks disabled by DU munitions were

7 exposed to these toxic radioactive DU particles.

8 Large numbers of troops were exposed by the DU


9 munitions fire in Dohar, Saudi Arabia.

10 DU particles can be ingested, inhaled, and

11 even enter the body through open wounds.

12 These are -- the following are our


13 recommendations.

14 Number 1, full body counts, invito

15 monitoring for DU-exposed troops should be done.


16 Although workers at the Aerojet Munitions production

17 facility are given full body counts twice a year, this

18 same opportunity is not extended to our soldiers.

19 Number 2, long term testing and tracking


20 of DU-exposed veterans.

21 Number 3, soldiers on active duty in

22 Bosnia or in any future conflict should be given


23 training and protective gear for DU.

24 Studies previously done on the health

25 effects of low level radiation should be considered as



23

1 you look at the DU issue.


2 Number 5, medical personnel need to be

3 trained to identify and treat DU health products.

4 Number 6, we should establish a peer

5 review committee of radiation health experts from the


6 civilian sector to act as a watch dog authority over

7 all studies conducted by U. S. government departments

8 and agencies on those who have been exposed to DU.


9 Number 7, there should be a coordination

10 of data with allied countries who also served in the

11 Gulf with us and whose veterans are also suffering

12 Gulf War illnesses.


13 Number 8, a moratorium should be

14 established on the use and export of DU munitions

15 until at least the studies that were recommended in


16 the AEPI report are completed.

17 When interviewed by Maggy O'Kane for the

18 British documentary entitled "Riding the Storm," which

19 I know staff has a copy of, Brent Scowcroft, National


20 Advisor to President Bush, said, "DU is more of a

21 problem than we thought when it was developed. It

22 turned out perhaps to be wrong."


23 The position of the Depleted Uranium

24 Citizens Network is that the use of DU weapons should

25 be banned.



24

1 And I just have one other thing I'd like


2 to say.

3 The NRC, the Nuclear Regulatory

4 Commission, regulates very closely the handling, the

5 disposal of depleted uranium, and it's very closely


6 regulated until it goes out into the field and used by

7 the troops and then there are no regulations.

8 CHAIRWOMAN LASHOF: Thank you very much


9 for your testimony.

10 MS. LYMBURNER: You're welcome.

11 CHAIRWOMAN LASHOF: Are there any

12 questions?


13 MAJOR KNOX: I have a question. You

14 mentioned that we should have protective gear that

15 would protect us against depleted uranium. What would


16 that be?

17 MS. LYMBURNER: Suits, I believe, and

18 masks. Whatever is given to workers who are exposed

19 to or have to handle depleted uranium. Exactly what


20 that gear is, I'm not sure, but I'm sure I could find

21 that out for you. But it is recommended in the

22 report.


23 There was also a recommendation that

24 actually came down to the Army during the time of the

25 Persian Gulf that this type of training and protective



25

1 gear be given, and yet it never reached the troops, so


2 that warning was never given to the troops. And I

3 don't know in Bosnia now where DU weapons are being

4 used what kind of training or protection is being

5 given.


6 MAJOR KNOX: Does your research show any

7 of the workers who deal with depleted uranium, do they

8 have abnormal birth defects in their children?


9 MS. LYMBURNER: I don't know about the

10 birth defects. I do know that the workers at the

11 Aerojet plant in Tennessee actually went out on strike

12 for health and safety reasons and two of the problems,


13 and there may be more, I know John Paul has given you

14 testimony, but kidney problems was a big problem, and

15 also leukemia.


16 DR. TAYLOR: And that brings another

17 question to my mind. Were there any symptoms similar

18 to what we've been hearing from other Gulf War

19 veterans with relationship to chronic fatigue syndrome


20 and some of the other things experienced by the

21 workers?

22 MS. LYMBURNER: I, you know, other people


23 that I work with would be glad to let you know that

24 and they do work at facilities. But I think one of

25 the reasons why we have atomic veterans that work with



26

1 us is because they also had radiation exposure, and I


2 know some of these bone problems and kidney problems,

3 leukemia and things like that, are problems that were

4 suffered by both groups of people.

5 CHAIRWOMAN LASHOF: Thank you very much.


6 Just for the record I would say that we

7 have every intention of looking into this area. We do

8 have a copy of the AEPI report, although that is not


9 an official report yet, it's not been officially

10 released, as you know.

11 MS. LYMBURNER: Yes.

12 CHAIRWOMAN LASHOF: And when it's finally


13 reviewed and released it's probably more appropriate

14 to comment further upon it.

15 We did not discuss this in the interim


16 report because in the interim report we only reported

17 on those issues we had actually looked at up until

18 that date, but this is on our agenda.

19 MS. LYMBURNER: Are you planning to have


20 a panel specifically dealing with that issue as you

21 did with all the other issues?

22 CHAIRWOMAN LASHOF: I do not believe so at


23 this time, but those are still open as to what

24 additional panels we'll have. As our work progresses

25 we'll see whether we need to.



27

1 MS. LYMBURNER: All right. Thank you.


2 CHAIRWOMAN LASHOF: Thank you.

3 Stephen McGarry, please. Is Stephen

4 McGarry here? Oh. I'm sorry. Didn't spot you.

5 Thank you.


6 SERGEANT McGARRY: Good morning. I'm

7 Sergeant First Class Stephen McGarry. I'm stationed

8 at Fort Devens, the 94th Regional Support Command.


9 I served over in the Gulf for ten months

10 with the 324th Data Processing Unit. Over that time

11 frame -- or since my return in June 1991 I've had

12 eight surgeries and I've had problems with my liver


13 count, bilirubin count. I'm not really a drinker or

14 anything like that, but that's what they thought that

15 was attributed to it, but I've had a poor reaction to


16 a bilirubin count which has been technically

17 unexplainable.

18 As I said -- mentioned, eight surgeries.

19 I'm on convalescent leave as I speak right now. I


20 just finished two surgeries: one on my ankle and

21 elbow surgery. I'm having problems with every part of

22 my joints, two knee operations, one ankle, my right


23 ankle, my left foot, had throat reconstruction because

24 of breathing problems. And then I had elbow surgery

25 on my right elbow, too.



28

1 The joint problems I've been having is


2 from bone spurs or whatever causing various parts of

3 my body to lock. I've also gained forty-five pounds

4 since the last year-and-a-half which has been really

5 unexplainable, probably a lot because of the lessened


6 physical activity, but I've gone from the MASA

7 Physical Fitness Team now to not being able to

8 participate in any physical activity pretty much at


9 all.

10 And the only thing that could be

11 accountable for it is the unexplained situation would

12 be the nerve agent pills that we had to take. It


13 seemed to affect every nerve in my body, a lot

14 probably could pay for being physically active through

15 my military career, but I'm paying for it now with, as


16 I said, eight surgeries. I've got another surgery

17 coming May 2nd to remove bones from my wrist because

18 my wrist -- I've got severe problems in my left wrist.

19 CHAIRWOMAN LASHOF: Any questions?


20 DR. CUSTIS: Has it ever been suggested

21 that you be processed for a medical dis -- you're on

22 active duty, are you?


23 SERGEANT McGARRY: Yes, I am, sir.

24 Unfortunately for myself right now, all

25 these surgeries have been handled individually. The



29

1 way Uncle Sam works it, they resolve a problem, it


2 gets done, instead of everybody looking at it in one

3 fell sweep or whatever. It's eight different doctors

4 that work, set up a cure or whatever, and tackle each

5 situation as it comes. So the answer is no.


6 I've been -- I went before a Medical

7 Review Board for my latest -- what they call a

8 profile. I have a profile right now because of back


9 problems. I can't stand in any one location for more

10 than then minutes or sit in one location for more than

11 ten minutes and I was considered fit for duty. So

12 that's as it stands right now.


13 CHAIRWOMAN LASHOF: What is your duty

14 assignment at this point?

15 SERGEANT McGARRY: I'm a computer


16 specialist at Fort Devens. I'm a training NCO. I

17 handle all the training schedules and activities that

18 go on on a -- setting up for a weekend drill and two

19 weeks ---


20 CHAIRWOMAN LASHOF: Have you been able to

21 carry out those duties?

22 SERGEANT McGARRY: To the best of my


23 capabilities, yes.

24 CHAIRWOMAN LASHOF: When was the first

25 surgery? Over what period of time have you had all



30

1 the surgeries?


2 SERGEANT McGARRY: The first surgery was

3 back in May of '93. I had the right elbow surgery.

4 My right elbow kept on locking up on me.

5 CHAIRWOMAN LASHOF: And all of them have


6 been for the same thing; that is, bone spurs in

7 different joints?

8 SERGEANT McGARRY: Bone spurs or painful


9 joint areas.

10 CHAIRWOMAN LASHOF: The surgeries have

11 always been to remove the bone spurs?

12 SERGEANT McGARRY: Yes, ma'am.


13 CHAIRWOMAN LASHOF: What have they done

14 for surgery?

15 SERGEANT McGARRY: I had a bunionectomy --


16 excuse me. That was the first one. That was back in

17 1992. I had the problem over in the Gulf with a

18 bunion from wearing the boots over there, and they

19 couldn't -- they didn't have the proper capabilities


20 of doing the surgery over in the Gulf so as soon as I

21 come back I had the operation done in early 1992.

22 So, it has been always somewhat bone-


23 related except for the throat reconstruction.

24 CHAIRWOMAN LASHOF: And what was the

25 throat reconstruction due to?



31

1 SERGEANT McGARRY: I had problems


2 breathing and my tonsils were somewhat swollen so they

3 removed the tonsils and uvula and opened up the

4 passageway to my throat. That possibly, being up in

5 Kuwait or wherever, the Gulf --


6 CHAIRWOMAN LASHOF: Did they give you any

7 diagnosis in relation to the bone spurs?

8 SERGEANT McGARRY: No. They just resolved


9 the problem.

10 DR. CUSTIS: There is a diagnosis:

11 osteochondritis dissecans. Are you familiar with that

12 term? Did they use that term with you?


13 SERGEANT McGARRY: No, sir.

14 CHAIRWOMAN LASHOF: Thank you very much

15 for your testimony.


16 Cecilia Mason.

17 MS. MASON: Good morning.

18 CHAIRWOMAN LASHOF: Morning.

19 MS. MASON: Thank you for the opportunity


20 to be here today to talk about veterans who are sick

21 from the Persian Gulf conflict.

22 My name is Cecilia M. Mason. I am the


23 chairperson for the Desert Storm Committee, founded in

24 1991, this is a Worcester, Massachusetts, non-profit,

25 tax-exempt organization. Our purpose thus far has



32

1 been an official welcoming home tribute in 1991 for


2 the Gulf veterans, the erection of the State War

3 Memorial commemorating the Persian Gulf veterans for

4 the Commonwealth of Massachusetts, in 1993.

5 Plus, we have also become a source of


6 public information and support group. Our focus now

7 is on the Gulf War Syndrome, and we are working to

8 secure funding for the research on those veterans who


9 have been injured by the environmental exposures in

10 the Persian Gulf conflict and who continue to

11 experience chronic illness. I guess I'm coming down.

12 It is essential for the VA to move toward


13 recognition of disability status of this syndrome of

14 which our veterans are so affected. In the interim,

15 it is equally vital to recognize the problems that


16 this disability brings, such as fatigue, sleep

17 disturbance, forgetfulness, joint pain, diarrhea,

18 muscle weakness, rashes, confusion, weight gain, and

19 like a growing number of Gulf War veterans, some of


20 whom remain apparently healthy, has fathered a child

21 with devastating birth defects.

22 Patterns of effects have begun to emerge,


23 patterns unlikely to result from chance alone.

24 Miscarriages are frequent among the spouses and women

25 who served in the Gulf, and the list goes on.



33

1 Gulf veterans may be suffering from a


2 general overload of chemical pollutants and their body

3 fluids are actually toxic, resulting in chemical-

4 induced illnesses, where they find themselves plagued

5 by tremendous physical, emotional and financial costs


6 from their disability.

7 It is the responsibility of this

8 government to take immediate action in order to


9 stabilize or minimize symptoms and avert further

10 disability.

11 There is a remarkable similarity of

12 patterns of these illnesses that these individuals


13 report to those reporting MCS, multiple chemical

14 syndrome, in the civilian population. MCS is also

15 referred to as an environmental illness and a chronic


16 somatic and disability debilitating symptoms triggered

17 by environmental exposures on a day-to-day basis.

18 MCS may be thought of as an acute

19 exposure, and within time the individual begins to


20 react to more and more substances and products at

21 lower and lower exposure levels.

22 The syndrome is most frequently caused by


23 an acute chemical exposure such as those reported

24 during the Persian Gulf conflict who face mind-

25 boggling array of environmental hazards, such as



34

1 pesticides, diesel fuels, oil fires, inoculations or


2 vaccines, depleted uranium, and the list just keeps on

3 going.

4 Veterans are also experiencing in their

5 search for validation of their illness the search for


6 a physician and diagnosis, and in their difficulty,

7 the inability to obtain acknowledgement for their

8 disability status.


9 The mechanism involved causing MCS is not

10 known. However, an observation level, those who study

11 exposure to substances and products that trigger their

12 symptoms, become more and more disabled both in number


13 of symptoms and the level of disability. Lack of

14 information on this health problem within the military

15 and the VA structure and the absence of literature to


16 recommend basic lifestyle changes in order to minimize

17 exposures result in continued ill health and more

18 severe health problems.

19 Lack of validation and the acceptance of


20 such symptoms from the VA and DOD all underline those

21 reluctant to address this problem and make necessary

22 adjustments and modifications in their life and


23 lifestyle. This may increase stress levels,

24 thereby exasperating systems for those already facing

25 illness and disability.



35

1 In conclusion, the health problems


2 experienced by Persian Gulf veterans have been

3 numerous and compelling. These veterans have made

4 research on chemical sensitivity imperative. The time

5 has come to determine what is the syndrome? What


6 measures and methods will be taken by this government

7 whose obligation and duty it is and now must be filled

8 without delay, to find out what this elusive


9 affliction is all about.

10 We urge the VA and DOD to work with other

11 agencies already involved with research, policy and

12 social illness. Please, do not reinvent the wheel.


13 Help set it in motion. For you see, I am also the

14 mother of a Persian Gulf veteran who is also afflicted

15 with the same symptoms.


16 CHAIRWOMAN LASHOF: Thank you very much.

17 Are there questions?

18 DR. TAYLOR: Just one quick one. You work

19 with a network of Gulf War veterans, is ---


20 MS. MASON: Correct.

21 DR. TAYLOR: And most of the veterans that

22 are in your network, are they all suffering from the


23 illness in some ---

24 MS. MASON: The majority.

25 DR. TAYLOR: The majority. Okay. How



36

1 many -- do you have a number?


2 MS. MASON: About eighty percent.

3 DR. TAYLOR: Eighty percent. And that's

4 in this area of the country, in Massachusetts, or near

5 your home?


6 MS. MASON: Within Massachusetts that I

7 have with my group. Okay?

8 DR. TAYLOR: How many are in your group?


9 MS. MASON: Well, there are several.

10 Let's see. There's about right now a hundred and ten

11 total. And I have been getting doctors, one of which

12 is a Dr. Edward Driscoll in Worcester, to take on some


13 of these cases at no cost.

14 DR. TAYLOR: Most of them are without

15 medical coverage then?


16 MS. MASON: That's right. And a lot of

17 them cannot get disability because the VA will not

18 recognize this when there's research already underway

19 for this particular problem.


20 CHAIRWOMAN LASHOF: Have they -- the

21 veterans you've worked with -- have they all

22 registered with the VA? Are they on the VA registry?


23 MS. MASON: Most of them. Yes. Most of

24 them did.

25 CHAIRWOMAN LASHOF: And they have sought



37

1 care at VA facilities?


2 MS. MASON: Most of them did, yes, and

3 they come back and tell me the same thing, that the

4 government doesn't want to do anything about this, and

5 I tell them the government has to recognize it because


6 there's what they call the multiple chemical syndrome

7 by the general population, and if these people have

8 been disabled because of everyday chemicals, you can


9 imagine what the veterans are going to be disabled

10 from with the, like I said, the array of chemicals

11 that they had to face.

12 DR. TAYLOR: Have any of these veterans


13 that have sought care at the VA, have they been

14 referred to some of the centers that are set up for

15 that?


16 MS. MASON: No.

17 DR. TAYLOR: So, they're lacking the

18 referral ---

19 MS. MASON: Yes, they are.


20 CHAIRWOMAN LASHOF: --- to the specialized

21 centers.

22 MS. MASON: Yes. And I -- again, I find


23 that a little astonishing. I don't understand why the

24 VA and DOD has not been able to communicate with these

25 agencies.



38

1 DR. TAYLOR: Are they going to the Boston


2 VA?

3 MS. MASON: Well, I've got a few from

4 Connecticut that come in. I don't know if they go to

5 Boston, but most of them do.


6 CHAIRWOMAN LASHOF: Thank you very much

7 for your testimony.

8 Christopher Dawer?


9 MR. DAWER: Madam Chairman and members of

10 the Committee, I want to thank you for giving me this

11 opportunity to speak with you providing information

12 about my illness as a result of the Persian Gulf War


13 and about my treatment by the veterans -- or the

14 Department of Veterans Affairs.

15 I was deployed to the Persian Gulf region


16 on September 29th, 1990, as part of an Air Force

17 active duty thirteen-man air base perimeter defense

18 team from Hanscom Air Force Base, Massachusetts. My

19 primary duty was M-60 machine gunner at a remote


20 ammunition supply depot in central Saudi Arabia.

21 On April 2nd, 1992, I was diagnosed with

22 a brain tumor. This was discovered after my headaches


23 that began during the war worsened and my vision began

24 to deteriorate. This tumor has recurred two more

25 times resulting in a total of four surgeries and



39

1 permanent damage to my endocrine system. The tumor is


2 still present today and I continue to be treated at

3 Mass. General Hospital's neuroendocrine clinic.

4 On May 4th, 1993, I underwent a surgery at

5 Mass. Eye & Ear to remove a large amount of fluid


6 accumulating in my sinuses. The physicians there do

7 not know why this occurred. Other diagnoses include

8 asthma which requires intermittent courses of steroid


9 and nebulizer treatments, and I am also forced to use

10 bronchial dilators throughout each day in order to

11 breathe comfortably.

12 Symptoms I now have that defy diagnosis


13 are near constant muscle pain and spasms, severe

14 fatigue and recurrent rashes.

15 Since the Gulf war has ended I have been


16 treated at nine different hospitals and examined by

17 well over one hundred physicians. This includes the

18 Department of Veterans Affairs which, in my opinion,

19 is a broken system.


20 Fortunately, I and approximately five

21 hundred other Gulf War veterans have found Dr. Victor

22 Gordon, who's present here with us today, at the VA


23 Medical Center in Manchester, New Hampshire. Dr.

24 Gordon is one of the few truly professional and

25 dedicated physicians within the Department of Veterans



40

1 Affairs. Thanks to him and a very small number of


2 others in the VA system, Gulf War veterans have

3 received some of the medical attention that we

4 deserve.

5 God bless you, Dr. Gordon, for not giving


6 in to the ineffective and reckless bureaucracy that

7 governs the very agency sworn to help this nation's

8 veterans.


9 I would like to know why most VA

10 physicians not only dismiss Gulf War veterans'

11 complaints but some have been nothing short than

12 abusive. A perfect example was on April 5th, 1995,


13 when I was asked by the Veterans Administration to

14 report for some tests at the Causeway Street Clinic in

15 Boston.


16 While Dr. Alfred Lanes was examining me

17 for skin rashes, he stated to me with a grin, he

18 stated to me, "Hey, Chris, be a man. Take off your

19 shirt." After telling me to look through hundreds of


20 copies of my medical records for myself for anything

21 that had to do with skin rashes, Dr. Lanes said one

22 more disgusting comment for me. I was a young man


23 with a family living life in the fast lane. Dr. Lanes

24 also told me he had a diagnosis for me: Yuppy

25 syndrome. Yuppy syndrome.



41

1 I resent the fact that Dr. Lanes displayed


2 total and blatant disregard for my health and well

3 being. This VA physician not only ridiculed and

4 insulted me, but also my family, along with thousands

5 of other sick and dying Gulf War veterans. These


6 verbal attacks that Dr. Lanes directed at me were

7 degrading and ugly in every sense, and I'm certain

8 that the Honorable Jesse Brown, Secretary to the


9 Department of Veterans Affairs, would be disheartened

10 to know that this mistreatment is occurring within the

11 VA system.

12 I'm very troubled by the fact that my


13 military medical and shot records apparently along

14 with thousands of other Gulf War veterans are now

15 missing. I have personally spoken with hundreds of


16 sick Gulf War veterans and their records cannot be

17 located either. Is this just another unexplainable

18 coincidence within the Department of Defense?

19 What about Persian Gulf VA claims for


20 service-connected disabilities? Even though I was

21 granted service connection for one of my disabilities,

22 and thank goodness I was, the VA has continuously


23 deferred ruling on several others going on three-and-

24 a-half years. I even submitted hundreds of supporting

25 medical documents and spent a total of six weeks at



42

1 the so-called Persian Gulf Environmental Center at the


2 Washington, D.C., Veterans Administration Clinic.

3 At one point my remaining claims

4 mysteriously disappeared from the VA's computer

5 system. I was forced to seek Senator Kennedy's help


6 to straighten this problem out.

7 The veterans of the Persian Gulf War do

8 not deserve the brush-off from the brass within the


9 Department of Defense. The fact that many of us were

10 sent into chemical and biological combat without

11 adequate training is not only deceptive but purely

12 lethal.


13 The Pentagon states that the winds never

14 blew down from the north carrying biological and

15 chemical warfare agents over us during the war. While


16 the military might not have taught many of us about

17 wind direction, the Boy Scouts did. Most of our

18 chemical and biological protective equipment was

19 manufactured and packaged during the Vietnam War. The


20 fact that there were hundreds of chemical alarms

21 sounding after SCUD missile attacks speaks for itself,

22 and the constant Allied bombing of chemical and


23 biological targets in Iraq and the subsequent fall out

24 on the troops is horrifying.

25 I understand that the Pentagon along with



43

1 government agencies have stated that they do not want


2 this to be another Agent Orange. It already is.

3 Someone once told me that the truth will

4 set you free. Unfortunately, I feel in my heart that

5 there are some in our government who do not believe


6 this, and I sometimes wonder if it was their son,

7 daughter, brother or sister who was an ill Gulf War

8 veteran that there may just be some justice after all,


9 because it's not only the veterans they are hurting

10 but their families as well.

11 My daughter's only three years old and

12 asking questions like, "Is the booboo inside your head


13 all gone yet, Daddy?" And, "Did you take all your

14 medicine today?" Maybe the top brass at the Pentagon

15 could explain to her why her twenty-seven-year-old


16 Daddy spends more time at the hospital than he spends

17 playing with her.

18 I applaud this Committee for gathering

19 information about our plight. I think the most


20 effective way, however, would be to actually spend a

21 week with us sick Gulf War veterans and our families

22 at home. Only then would you know the true magnitude


23 of Gulf War Syndrome.

24 Thank you.

25 CHAIRWOMAN LASHOF: Thank you very much.



44

1 Are there any questions?


2 You said that you've been in nine

3 different hospitals and over a hundred doctors.

4 MR. DAWER: That's correct, ma'am.

5 CHAIRWOMAN LASHOF: Where has that been


6 and ---

7 MR. DAWER: In the Boston area, such as

8 Mass. General Hospital, Mass. Eye & Ear, different


9 hospitals in the Boston area, some in Concord,

10 Massachusetts, Leominster, Massachusetts.

11 CHAIRWOMAN LASHOF: Those have been non-

12 military hospitals, not VA hospitals?


13 MR. DAWER: That's correct. Well,

14 actually, that isn't -- nine hospitals is including

15 the Veterans Administration which is the Washington,


16 D.C., VA, which is the Environmental Clinic, that was

17 set up, and also to see Dr. Gordon on a regular basis

18 up in Manchester VA up in New Hampshire.

19 CHAIRWOMAN LASHOF: The care in the other


20 civilian hospitals has been paid for how?

21 MR. DAWER: Well, thank goodness I have a

22 job, I work for MIT, and they know my situation, and


23 I work when I can work, but they're giving me full

24 benefits, in order for me to get ---

25 CHAIRWOMAN LASHOF: I see. So you have



45

1 comprehensive health insurance that has been able to


2 cover your medical costs?

3 MR. DAWER: Thank God that I do.

4 CHAIRWOMAN LASHOF: Okay. Thank you. Any

5 other questions?


6 Thank you very much.

7 Mr. Craig Stead?

8 MR. STEAD: Madam Chair, members of the


9 Committee, good morning. Thank you for allowing me to

10 speak about petroleum illness, its symptoms, diagnosis

11 and treatment.

12 My name is Craig Stead, and I live in


13 Putney, Vermont. I'm a chemical engineer with two

14 degrees from Cornell University. I'm also a

15 registered professional engineer.


16 I know petroleum illness. As a civilian

17 I've lived with it for twelve years. I got it from

18 drinking oil-contaminated water. For two-and-a-half

19 years I also showered in the water. I know the


20 disabling symptoms of petroleum illness. The

21 inability to breathe, the sleepless nights, the

22 emergency room visits. I've found ways to both


23 diagnose and treat petroleum illness.

24 I was driven to this research by my own

25 health problems, and I've actually gone from in 1986



46

1 when I was sleeping twenty hours a day and


2 unbelievably ill to be able to stand in front of you

3 as a functioning human being.

4 So, what I'd like to do is share this

5 knowledge of my ten years of research with this


6 committee and the veterans ill with Gulf War illness.

7 I've read the transcripts of all twelve

8 days of hearings you've had, and I find the symptoms


9 expressed by many of the ill veterans are my own. I

10 would say that at this point my symptoms, in many

11 cases, I do not have what I had ten years ago, but I

12 am still disabled from severe chronic asthma and I'm


13 on a drug therapy program for it. And I notice in

14 this room there's a problem with the air conditioning

15 system that makes you want to cough; something's in


16 it.

17 One of the things I've noticed from all

18 your hearings so far is I haven't seen anyone

19 connecting the petroleum exposure of the veterans to


20 the Gulf War illness as a causative factor. And one

21 point I'd make is there is a large body of knowledge

22 already available on petroleum illness, its symptoms,


23 its diagnosis and its treatment, and I would emphasize

24 diagnosis and treatment because that seems to be one

25 of the problems we have right now: how do you



47

1 diagnose this illness and how do you treat it.


2 I researched this because I happened to be

3 a scientist and I was very sick and I had been

4 perfectly healthy prior to that, and my doctor at

5 Dartmouth Hitchcock Medical Center directed me to the


6 library. I also have contacts at the Harvard School

7 of Public Health and the University of Massachusetts

8 Chenowith Laboratory which relates to how you diagnose


9 and analyze petroleum in the body.

10 So, to sort of summarize it, I understand

11 and know the methods of diagnosis and treatment for

12 those veterans who have petroleum illness, and I don't


13 believe that's the only causative factor in the

14 Persian Gulf Syndrome, but I think it's a major one.

15 We all know petroleum was a major


16 environmental exposure for our troops in the Gulf War.

17 There was a petroleum mist in the air continuously

18 from the oil field fires, and your exposure to it was

19 a function of the local weather conditions, air


20 inversions and wind direction. Petroleum contaminated

21 the drinking and shower water, both on land as well as

22 on the ships. Combat clothing was soaked with


23 petroleum, and the troops were in this combat clothing

24 for days, or longer. I don't know, I haven't talked

25 to enough of them to find out what exactly was that



48

1 exposure.


2 There was also significant exposure to

3 petroleum fumes and diesel exhaust.

4 The petroleum was inhaled from the air, it

5 was ingested with food and water, and it was absorbed


6 through the skin.

7 The symptoms of petroleum illness are

8 numerous, and they are a function of your genetic


9 makeup. This is my conclusion. If you take a hundred

10 people and put them in a theater like the Gulf War,

11 some will have no symptoms from a petroleum exposure,

12 and from what I can gather from my research it would


13 appear like maybe half of the people would have no

14 symptoms and the other half would have anywhere from

15 mild to intensely severe symptoms.


16 Typical symptoms are -- and this is just

17 a short list -- is shortness of breath, wheezing and

18 cough -- and this is from the petroleum in the lungs.

19 And the petroleum does not come out of the lungs


20 easily.

21 There's an inability to sleep soundly, and

22 this leads and is part of chronic fatigue, although it


23 is not the lack of sleep that is the chronic fatigue.

24 There is a sensitivity to petroleum

25 exposures. There's a catchall which is called



49

1 multiple chemical sensitivity or multiple chemical


2 syndrome. I think it's a little more complex than

3 that. But specifically, you have a -- your symptoms

4 are increased by exposure to petroleum solvents,

5 petroleum fumes, and combustion fumes, in general, air


6 pollution.

7 There's also immune system dysfunction,

8 you could call it immune suppression. You have a high


9 susceptibility to infections, and in my particular

10 case I had incredible lung infections, which I don't

11 have now, but for a time I did.

12 There are other symptoms besides these,


13 but this is just sort of a brief overview.

14 How do you diagnose petroleum illness?

15 One way is you can wash the lungs with a saline


16 solution. It's called bronchoalveolar lavage. You

17 can pull the petroleum out of the lungs and you can

18 analyze that petroleum to find its environmental

19 origin.


20 Another method is computer tomography,

21 which I called it attuned X-ray. I'm not an expert in

22 this at all. But regular X-rays do not pick up


23 petroleum in the lungs.

24 And, of course, there's biopsy of the

25 target organs which is the lungs, liver, spleen and



50

1 lymph nodes. A section of the target organ will show


2 visible petroleum droplets.

3 How do you treat it? The most commonly

4 used treatment is oral steroids. It reduces the

5 inflammation of the lungs. It allows expectoration of


6 the oil in the lungs. And it will reduce the low

7 grade fever which sometimes shows up. There are some

8 diet food groups that appear to help in metabolizing


9 toxic petroleum compounds. One technique was washing

10 the lungs with a detergent which would actually wash

11 the petroleum out and recover lung function. And

12 there's immunotherapy using drugs to boost the immune


13 system.

14 Conclusion: I have some solutions to

15 diagnose and treat petroleum illness. They're based


16 on my own experience and my own ten years of research

17 and working with medical schools. I'm here to share

18 the knowledge with this Committee and the ill vets.

19 And with that, thank you.


20 CHAIRWOMAN LASHOF: Thank you very much.

21 Questions?

22 DR. TAYLOR: I just wanted to ask one.


23 Mr. Stead?

24 MR. STEAD: Yes.

25 DR. TAYLOR: Did you receive a diagnosis



51

1 from a physician from the VA system or is this based


2 on your own research and ---

3 MR. STEAD: This is my own research

4 because I became ill from an unknown cause. I'd been

5 perfectly healthy until I got this exposure, and when


6 I realized ---

7 DR. TAYLOR: Where did you receive the

8 exposure exactly?


9 MR. STEAD: I had a domestic water system

10 that had a pump in it that had an oil-filled motor,

11 and the motor had a hole in it and leaked oil into my

12 water for two-and-a-half years, and not only I got


13 sick but my entire family did from this petroleum

14 exposure. It smelled like diesel oil in our shower.

15 DR. TAYLOR: And you went to a physician,


16 or no? This -- you just ---

17 MR. STEAD: This came out of my own

18 research. I said there has to be an environmental

19 cause to this illness I'm experiencing. My son had


20 three hospitalizations for respiratory problems.

21 DR. TAYLOR: Were there any other water

22 systems affected in your neighborhood, or was this


23 just your own system?

24 MR. STEAD: It's a private drilled well,

25 but I'd also mention I have in my own connecting with



52

1 people found other people with a similar experience


2 with the same type of pump who had similar symptoms;

3 so that's how I've sort of put this together.

4 DR. TAYLOR: And you sampled the water and

5 found out the exact content or the amount of petroleum


6 in the water?

7 MR. STEAD: No. You cannot -- the type of

8 petroleum that was in the water -- and this is, I


9 think, an important point to this Committee -- people

10 think of petroleum as one single compound, say

11 gasoline or diesel or so forth. In fact, it's a very

12 complex mixture of compounds, and a Kuwait crude would


13 have well over a thousand compounds in it, many of

14 them never described in the sense of scientifically.

15 The impact of the petroleum on you in the


16 sense of the health effect is a function of what

17 exactly you breathe in. The material we breathed in

18 was an industrial oil that was one-third aromatic

19 compounds like mothballs, and it's a very, very toxic


20 oil, it turns out. Other oils are much more benign,

21 let's say pharmaceutical grade mineral oil.

22 So, to go back to -- you cannot test for


23 that oil in our water.

24 DR. TAYLOR: You couldn't determine the

25 exact contents of the petroleum, like from the water,



53

1 you could not do that.


2 MR. STEAD: No, you could not. In fact,

3 we had our water tested several times because we said

4 it smells like oil and the labs came back and said

5 there is no problem with your water, but the type of


6 oil that was in there no lab in the world would have

7 tested for, it turns out.

8 Any other questions?


9 CHAIRWOMAN LASHOF: You also said that the

10 diagnosis can be made by bronchoalveolar lavage and

11 also by biopsy. Have you had that done and have they

12 found lipid deposits in any of your organs?


13 MR. STEAD: No. I have not. This comes

14 from my study of the literature and case studies.

15 Basically, if you look at the subset of where this --


16 most of this information is, on the first level it's

17 under a thing called lipoid pneumonia. It has not

18 been done on my because I have not been able to afford

19 it. I am uninsured and I have had incredible medical


20 bills.

21 CHAIRWOMAN LASHOF: Okay. Thank you very

22 much. No other questions.


23 MR. STEAD: Thank you.

24 CHAIRWOMAN LASHOF: Staff Sergeant Joseph

25 Sturniolo.



54

1 SERGEANT STURNIOLO: Madam Chairperson,


2 panel, I'd like to thank you for hearing me.

3 My name is Joseph Sturniolo. I was a

4 First Sergeant over in the Gulf. We deployed over in

5 January '91. We were in Saudi Arabia and Kuwait. Our


6 job was collection, handling and processing prisoners

7 of war.

8 The illnesses since I've come back, I've


9 had shortness of breath, I've been diagnosed with

10 asthma, I've been diagnosed with problems with my

11 liver, I've been diagnosed with problems with my

12 knees, and I've also been diagnosed with post


13 traumatic stress syndrome.

14 In going back to the Gulf, one thing that

15 I know affected my -- that caused asthma that affected


16 me was that a lot of times over there during -- when

17 the oil fires started, up until almost noontime it

18 would be dark, the sky would be black.

19 We'd learn -- because we were out in the


20 desert -- we'd learn that when we washed our clothes

21 or anything to take them in at night and not to touch

22 the tent -- the guide ropes of the tent or the tent,


23 because if you touched them your hands were black,

24 because all this stuff would come down at night with

25 the condensation, with the moisture. So, anything we



55

1 had outside, we had to bring into the tents.


2 So, we knew we were, you know, we had to

3 be breathing this stuff in.

4 In '94 I signed up -- 1994 I signed up and

5 got with the Department of Defense physicals and I


6 took a physical in '94. They called me back in '95

7 and they sent me to Walter Reed Army Hospital for two

8 weeks. That's where they diagnosed me with liver


9 problems. They said my knees -- they call it -- they

10 said my kneecaps were dislocated from the ligaments.

11 The -- I forget what they called them, condensation

12 patella was -- I'm not sure about the pronunciation.


13 They also -- that's where they diagnosed

14 me as having post traumatic stress syndrome.

15 They also told me there I had asthma, and


16 what was amazing about that was first they told me,

17 well, you know, asthma is hereditary. I said nobody

18 in my family's ever had asthma. I don't have any

19 relatives that ever had asthma. And they said, well -


20 - and I have it in writing from the doctor. He says,

21 well, you have asthma now and hopefully you'll outgrow

22 it. I'm forty-five years old. I don't think I'm


23 going to outgrow asthma. I thought it was a

24 ridiculous thing to put down in writing, even to say

25 it to me. You know, you're going to outgrow it.



56

1 I didn't go -- they called me up for Phase


2 3. I didn't go back for Phase 3. They told me it

3 would be a minimum thirty-day stay in the hospital

4 and, you know, I can't afford to do that. I have a

5 job here; I probably wouldn't have it when I came


6 back. Who's going to support my family? And they

7 said just a minimum thirty days, so they could be

8 extended for longer than that, so I didn't go back.


9 When I told them that, they mentioned to

10 sign up with the VA up here in Boston, which I did.

11 In August of '95 I filed a claim. I took all the

12 paper work from Walter Reed and filed a claim with the


13 Boston VA. I haven't heard anything since. They send

14 me letters saying that it's still reading. So, that's

15 about where it left -- where I'm left off with that.


16 They called me for a physical in February

17 and pretty much they just went over what -- the paper

18 work I already had submitted to them, and they just

19 confirmed that yes, you should seek counseling, you


20 have post traumatic stress syndrome; yes, you have

21 asthma, but they just leave it at that. They don't

22 say it was caused by the Gulf; they don't say anything


23 about it. They just say "you now have asthma." All

24 right? You now have psychological problems. Seek

25 counseling. You know.



57

1 Hopefully once they finish the procedure,


2 you know, I'll get -- they'll sign me up for

3 counseling.

4 And as far as the liver problem goes, they

5 said -- they said, you have fatty tissue in your


6 liver. They don't know how it got there, or they

7 didn't have a reason for me. They say, we normally

8 see that in extremely obese people or in alcoholics.


9 I'm neither. I'm not obese and I don't drink. So,

10 you know, they don't have any reason why I have these,

11 you know, I have fatty tissues in my liver.

12 They just told me to come back every six


13 months and retest and see how it goes.

14 I am a little overweight, I'll admit to

15 that. They told me to lose about ten pounds and see


16 what happens. So, that's pretty much it.

17 CHAIRWOMAN LASHOF: Thank you very much.

18 Questions?

19 MAJOR KNOX: You said you didn't go to the


20 VA until 1994. Were you having symptoms at that time

21 that sent you for your physical?

22 SERGEANT STURNIOLO: I was, I -- yes. I


23 had shortness of breath, I had trouble breathing. I

24 had normal aches and pains, but I'm getting old, you

25 know, so I just figured, you know, you're getting old,



58

1 you have normal aches and pains, you know. So I


2 didn't really give it too much concern.

3 And then I had a real bad bout of -- it

4 must have been the asthma, later diagnosed as asthma,

5 and I had really trouble breathing, really severe


6 trouble breathing, so that scared me, and that's when

7 I, you know, I went to -- signed up for a doctor. And

8 they told me about the program that the government was


9 just starting, which they were just starting in '94,

10 so I signed up for it, and that's when.

11 MAJOR KNOX: The other question is you

12 mentioned that you hoped that they would provide


13 counseling for you for post traumatic stress disorder.

14 SERGEANT STURNIOLO: Right.

15 MAJOR KNOX: You feel like you could


16 benefit from that counseling? You don't feel like

17 they labeled you with that unnecessarily?

18 SERGEANT STURNIOLO: I have trouble

19 sleeping; I have a lot of problems. And when I went


20 to the Causeway Street VA when they did that thing,

21 the evaluation there, the psychiatrist recommended

22 group counseling, and he also recommended medication


23 which I really don't know about the medication. But

24 I -- it couldn't hurt. You know. I'd be willing to

25 try it.



59

1 CHAIRWOMAN LASHOF: Are you now receiving


2 counseling ---

3 SERGEANT STURNIOLO: No.

4 CHAIRWOMAN LASHOF: --- or are you just on

5 a waiting list? Are you on a waiting list or what?


6 SERGEANT STURNIOLO: I'm just waiting to

7 hear back from the VA. I haven't started anything.

8 I'm just waiting to hear from the VA. I filed all


9 this paper work with the VA, like I said, and they

10 said they'd get back to me, and I'm just waiting.

11 CHAIRWOMAN LASHOF: How long has that been

12 since they advised counseling until now?


13 SERGEANT STURNIOLO: That was February of

14 -- that was February 14th. And I'm just waiting to

15 hear from them. I haven't heard from them yet.


16 CHAIRWOMAN LASHOF: Okay. Thank you. No

17 other questions. Thank you very much.

18 Dr. Victor Gordon.

19 DR. GORDON: Good morning.


20 I've been taking care of Persian Gulf

21 veterans since '91. I have 504 Persian Gulf veterans

22 under my medical care. Eighty-five percent were


23 younger than thirty years of age when first seen by

24 me. They came from all military branches.

25 When I had twenty Persian Gulf veterans



60

1 under my care, I was not sure what was going on. When


2 the number of these veterans increased to 193, I was

3 convinced that I was dealing with environmentally-

4 related illnesses. When the number increased to 504

5 in '96, I became concerned about their health. The


6 reasons for my concern are multiple. I will mention

7 a few.

8 So far, the scientific research has not


9 been able to provide clear answers in regard to the

10 nature of these illnesses. We are still using

11 hypotheses and no scientifically sound facts. This

12 situation generates endless controversy which


13 precludes progress and understanding of Gulf-related

14 diseases.

15 Five years after the Gulf War some of the


16 studies are still focusing on epidemiology and

17 psychiatric aspects of these illnesses. One of the

18 epidemiology studies which is going on, National

19 Health Service of Gulf War veterans and their


20 families, promises to come up with the final answers

21 as to whether the Gulf War veterans are sicker or not

22 when compared with a controlled group.


23 I have the greatest respect for the

24 investigators of this study, but I also have serious

25 concern as to whether this study can be done correctly



61

1 at this time. The investigators propose to use a


2 random selection for the subjects for this study. The

3 conflagration of Persian Gulf War veterans population

4 group, the way it presents in '96 makes this random

5 selection questionable because of repeat divisions on


6 this population which was incurred by the Persian Gulf

7 registry process.

8 Before the Persian Gulf registry started,


9 the health characteristics and variables could have

10 been accomplished successfully. The attached figure

11 to my statement explains how this division occurs.

12 When the characteristics and variables of a group or


13 groups are known to the investigator it creates the

14 potential for a bias selection as an alternative to a

15 random selection. The bias selection leads to skewed


16 results; skewed results in any direction will generate

17 controversy which could divert our focus from solution

18 of Gulf War health problems.

19 What we need now are studies which must


20 focus on the Gulf physical and environmental hazards

21 which our troops were exposed to, on finding

22 diagnostic physiological and biological markers for


23 these diseases, on the pathogenesis of these

24 illnesses, and on finding a treatment strategy.

25 The promotion of stress duty as the mother



62

1 of all Persian Gulf illnesses will not solve the


2 problems of the majority of Gulf veterans. Less than

3 five percent of veterans in my group present symptoms

4 which my supported diagnosis of PTSD. Even these

5 veterans present other additional symptoms which do


6 not fit the description of PTSD. The causes of this

7 sickness require alternative explanation. A

8 psychiatric diagnosis cannot be established in a


9 particular person until medical evaluation and

10 diagnostic tests to exclude the physical illness has

11 been accomplished.

12 This is a time honored law in medicine


13 which both medical and psychiatric doctors adhere to.

14 Unfortunately, the law is ignored in cases of Gulf War

15 veterans.


16 I would like to bring to your attention a

17 few unusual health problems with my Persian Gulf

18 veteran group. Four individuals developed recurring

19 muscle paralysis which will last two to four hours


20 followed by full recovery. The routine neurological

21 evaluation and workup were negative. One of them had

22 very extensive evaluation and was negative for any


23 organic disease. The final diagnosis given to this

24 patient by doctors was conversion reaction of

25 hysteria, a diagnosis which I do not agree with.



63

1 My many veterans report teeth problems.


2 This consists of softening of teeth with easy

3 breakability followed by infection. On examination I

4 see cracked, broken and worn off teeth. Some cases

5 have periodontal disease and abscesses. Dental


6 specialists have no explanation for these tooth

7 diseases occurring in a young person.

8 Disorientation while driving is commonly


9 reported by veterans. Many veterans report finding

10 themselves in places or towns far from their initial

11 destination.

12 Ten veterans reported skin and general


13 reaction upon contact with sperm on their sexual

14 partners.

15 Six veterans report birth defects and


16 disease in their children conceived and born after the

17 Gulf War.

18 Twenty veterans reported miscarriages in

19 their spouses. Of this, several spouses have more


20 than one miscarriage.

21 The current available treatment for these

22 veterans relies heavily on anti-depressants, mood


23 swing controllers, sleeping pills and conventional

24 treatment for some of the symptoms. This treatment

25 does not address the cause or causes of symptoms in



64

1 the majority of veterans. This treatment is like


2 treating a boil with a Band-aid.

3 How I treat these veterans, I spend

4 unlimited time with them and I'm available for them

5 whenever they need to see me beside their scheduled


6 follow-up appointment. I treat the symptoms using the

7 conventional treatments. I keep an eye on their

8 symptoms in order to observe the trend of this.


9 The general trend is the persistence of

10 these symptoms. In very few cases I noticed some

11 improvement, and in some cases worsening of the

12 symptoms.


13 Thank you.

14 CHAIRWOMAN LASHOF: Thank you very much,

15 Dr. Gordon.


16 Marguerite?

17 MAJOR KNOX: Dr. Gordon, I just want to

18 commend you. To have veterans feel very pleased with

19 the care that you've given them makes the committee


20 feel very good. It saddens all of us to know that

21 there are veterans who feel like they are not

22 receiving the care that they need from the VA, and you


23 need to be commended for that.

24 DR. GORDON: Thank you.

25 DR. CUSTIS: I would second that, Dr.



65

1 Gordon. You're obviously a very caring physician.


2 DR. GORDON: Thank you.

3 CHAIRWOMAN LASHOF: Dr. Gordon, how long

4 have you been with the VA?

5 DR. GORDON: I've been with the VA for


6 seventeen years.

7 CHAIRWOMAN LASHOF: So, you've seen

8 veterans from other wars come back.


9 DR. GORDON: Exactly.

10 CHAIRWOMAN LASHOF: And have you seen

11 similar conditions following Vietnam or ---

12 DR. GORDON: Not at all, but I'm glad you


13 brought this to me. I have some veterans from the Air

14 Force who were stationed during the Gulf War in the

15 Red Sea. Those veterans have fewer or no symptoms as


16 compared to the rest of the veterans being in the war

17 zone.

18 I have four veterans who contacted me

19 because they would like to go on the Persian Gulf


20 registry but those veterans were deployed to the Gulf

21 in the summer of '93 and thereafter. I asked them if

22 they had some problems. They said no, not at all. I


23 asked them, do you see any problems in your comrades

24 of the unit. They said no, I'm not aware of any

25 problems.



66

1 So -- but I don't see, obviously, the same


2 thing or similar thing in veterans from other war.

3 Well, I see, because I'm in charge of Agent Orange,

4 too, I see some of those symptoms like fatigue and

5 memory problems, skin rashes, in some of the Vietnam


6 War veterans who came through the Agent Orange to see

7 me.

8 CHAIRWOMAN LASHOF: Have you treated any


9 of the -- well, you have treated the veterans with

10 doxycycline?

11 DR. GORDON: Exactly.

12 CHAIRWOMAN LASHOF: Yes. Have you treated


13 all the veterans, all five hundred, with it ---

14 DR. GORDON: No.

15 CHAIRWOMAN LASHOF: Or -- how do you


16 select which ones you've been giving ---

17 DR. GORDON: In particular I select

18 veterans who come with sinusitis, I notice sinusitis

19 requires at least four weeks of antibiotic therapy,


20 and I choose doxycycline because it's easy to take

21 once a day for thirty days and it's relatively cheap,

22 and the hospital has no objection.


23 CHAIRWOMAN LASHOF: I see. All right.

24 Are you familiar with the work of Dr.

25 Nicholson?



67

1 DR. GORDON: Yes, I am.


2 CHAIRWOMAN LASHOF: Who has been

3 recommending doxycycline across the board?

4 DR. GORDON: Yes, I am.

5 CHAIRWOMAN LASHOF: You have not adopted


6 that kind of an approach?

7 DR. GORDON: I've been asking for over

8 five years now, let's get busy on research and find


9 out what is going on and come up with a treatment

10 strategy. Until then I don't dare to embark on those

11 ---

12 CHAIRWOMAN LASHOF: That's fine.


13 Again, thank you for your concern and the

14 kind of care you are giving.

15 DR. GORDON: Thank you.


16 CHAIRWOMAN LASHOF: Master Sergeant Leon

17 Dodd.

18 SERGEANT DODD: Good morning, ladies and

19 gentlemen.


20 My name is Leon Dodd. I'm a former First

21 Sergeant in the United States Army, retired after

22 twenty-six years.


23 I never went to the Veterans

24 Administration until after I came back from the

25 Persian Gulf. I had problems from my Vietnam



68

1 experience and I felt that it would be a career-


2 hindering scenario for me to go to the VA. But once

3 I came back from the Persian Gulf suffering from

4 chronic fatigue, lack of any steady sleep which was

5 eventually diagnosed as PTSD, painful joints, muscle


6 spasms, and frequent bloody stool.

7 I was assigned at times to supervising,

8 care and protecting of the lives of as many as five


9 hundred troops at any given time during my tenure over

10 there. We spent forty-five days in Kuwait City during

11 the oil fires running a MASH unit. My vehicle, which

12 just so happened to be a white Jeep Cherokee, ended up


13 being dark gray by the end of that tour of duty over

14 there.

15 When we first were under attack through


16 SCUD attacks, many of us, many of my troops, after we

17 got out, even after we got out of our chemical gear,

18 which was two to three hours after the attacks were

19 over and the all-clear was sounded, we would still


20 feel a misting coming down. It's a misting that was

21 not a petroleum-based mist of a fuel that would be

22 from a device that was set off up above us, but we


23 strongly believe, due to the fact that the next day

24 the flying creatures, birds, were kind of lying about

25 dead.



69

1 All our chemical detection devices went


2 off on every single SCUD attack we had. We were given

3 the story that it was a malfunction.

4 I'm sorry that all our gear is not -- I've

5 heard many people say their training and their gear


6 was inadequate. I've been a senior NCO for my entire

7 -- for half my career. Our training is exemplary, and

8 if it wasn't, that's the fault of their training


9 NCO's. And our equipment is better than any in the

10 world. It protects us. And unfortunately we didn't

11 have enough protection in this war.

12 I don't know what else I can say that


13 everyone else hasn't said here. It's -- there are

14 chronic effects that continually affect us all that

15 are causing our lifestyles to drastically change. I


16 appreciate the fact that there is a committee looking

17 into this scenario for the Gulf War. On the other

18 hand, I'm a little offended we never had such a

19 committee to work on Agent Orange when I spent two


20 years nine months in Southeast Asia. But we can't go

21 back in time, and as long as we can work forward from

22 here and hopefully all the veterans will be taken care


23 of, that would be wonderful.

24 I have found the VA, in my particular

25 scenario, to be extremely helpful. I go to the VA



70

1 over in Bedford, Massachusetts. If there's a problem,


2 I walk in, or if I can't get there I call in, they

3 will give me an appointment, they will look at me,

4 they will diagnose me, or they will try to treat me.

5 I have not had a problem yet, and I don't foresee one.


6 They have been very caring and concerned individuals

7 there and they have looked at all the tests and all

8 the procedures they've done to me, they've given me a


9 colonoscopy, they've done this, they've done that.

10 They've done everything that I believe has been in

11 their purview to be able to do to try to resolve this

12 problem, and unfortunately it hasn't been able to be


13 resolved, but at least my feelings and concerns for

14 the VA are positive.

15 CHAIRWOMAN LASHOF: I'm very glad to hear


16 that, as I'm sure the Committee is.

17 Are there other questions?

18 DR. TAYLOR: Are you currently receiving

19 any treatment now?


20 SERGEANT DODD: I receive treatment once -

21 - I go once a month, or more if I need to. I'm on

22 medication every day.


23 DR. TAYLOR: And you're working now?

24 SERGEANT DODD: Yes. I own my own

25 business.



71

1 CHAIRWOMAN LASHOF: You had been in


2 Vietnam?

3 SERGEANT DODD: Yes, ma'am.

4 CHAIRWOMAN LASHOF: Had you been ill after

5 Vietnam at all?


6 SERGEANT DODD: Yes, I was, but I wanted

7 to stay in the military. I just pushed it aside for

8 a wile.


9 CHAIRWOMAN LASHOF: Are the symptoms you

10 have now similar to the ones you had then, or ---

11 SERGEANT DODD: No. No. My body aches

12 and my muscle pains are totally different. My


13 breathing difficulties are totally different. The

14 fungus that I continually get off and on, which I

15 attribute, because of my -- I've lost very close


16 friends due to this Agent Orange fungus -- I -- it

17 comes and goes on my fingernails and parts of my body,

18 but it's not -- I wasn't affected as heavily as some

19 others were.


20 CHAIRWOMAN LASHOF: Thank you very much.

21 SERGEANT DODD: Thank you.

22 CHAIRWOMAN LASHOF: No other questions.


23 Mr. Edward Bryan.

24 MR. BRYAN: Good morning.

25 CHAIRWOMAN LASHOF: Good morning.



72

1 MR. BRYAN: I have before me today facts


2 and figures on oil. You people report in the federal

3 activities related to health of Persian Gulf veterans

4 that you people found five chemicals in oil. I found

5 twenty-four different chemicals in oil, and I'm pretty


6 upset about that where the government did not come

7 through on the oil companies.

8 There is a lot of problem with the oil.


9 I'm a full-time fire fighter. Oil is hazardous, no

10 matter what type of oil you have, it's hazardous

11 before it's used, never mind after it's used, it's

12 even hazardous after it's used. The oil companies did


13 a good job of keeping it out of the public, keeping it

14 out of the government.

15 The government found five chemicals in


16 oil. It states right on page 36 of March 1995 book

17 from the government. Five chemicals. I don't buy

18 that. And I've got a report here for the Committee.

19 I'm speaking for a lot of veterans today


20 that could not attend.

21 Why wasn't this broadcast in the media?

22 Why wasn't this brought out to the public? I think


23 we'd have a lot more people here, and I think we'd be

24 here for a few days answering a lot of questions.

25 All the veterans are tired of the lowest



73

1 medical care standard there is. There's a difference


2 between civilians and the Veterans Administration

3 Hospital. It's clearly evident. And I'm living

4 proof. They said I shouldn't be here today but I'm

5 here.


6 I found more than the five chemicals in

7 crude oil. I found twenty-four hazardous chemicals.

8 There are all kinds of health effects. And in FM-8-


9 285, the nerve agent book, there are more health

10 effects. And they have a relationship of what we're

11 all complaining about. There was nerve gas over

12 there. You people are going to have to realize, there


13 was some type or form of nerve agent. Sarin gas has

14 been used widely all the way down to World War I.

15 It's just evident that you people are going to have to


16 come down to a consensus for this, for the Gulf

17 veterans. I mean, all the other veterans groups,

18 World War I, Civil War, there was no problem there.

19 The Toms River in New Jersey, the cancer


20 rate's up seven times. Boston Harbor, Chelsea, they

21 all have multiple chemical sensitivity or what's equal

22 to it is chronic fatigue syndrome. There's a problem


23 over in that area of Chelsea here in Massachusetts.

24 Rocky Flats out in Colorado, there's a

25 problem with the nuclear waste out there.



74

1 The government's going to have to do


2 something with the nuclear waste, the nuclear

3 chemicals, the DU, they're going to have to come down,

4 they're going to have to do their job. And I feel the

5 government is not doing their job.


6 The veterans' groups are talking about

7 raising the military budget for the Persian Gulf

8 illness ten billion dollars every year. Presently if


9 you compensated all the veterans, you're talking about

10 sixty billion dollars to date, sixty billion.

11 We can detect one person on the ground at

12 40,000 feet but we cannot detect one million tons of


13 nerve gas in Iraq. I think we should invade Iraq and

14 destroy everything in sight to come up with an answer

15 and get rid of that type of area that's over there in


16 the Middle East. I'm sorry but that's what we might

17 have to do.

18 I have two children. I cannot have any

19 children. I wanted nine. I'm afraid to have another


20 child. What are you people doing on the effects --

21 and I think it's related to the oil fires and nerve

22 gas. Our own uniform was full of chemicals. I didn't


23 know that until a lot of other people were speaking.

24 The DEET that they gave us to put on our

25 uniform to keep the flies away, there's a secret



75

1 formula in there called inert ingredients. We don't


2 know what's in there, but I'll bet you there's a lot

3 of health effects out of it, and we the public want to

4 know what's in those labels. We want to know what

5 we're putting on our bodies every day, either whether


6 I'm in the military, or civilian life, or even for my

7 children.

8 The Persian Gulf veterans still cannot


9 give blood. Every time you go to try, no, we don't

10 want your blood, can't give it.

11 The oil companies did a good job not

12 letting the government or the public know the hazards


13 of oil products. The veterans' hospitals are not up

14 to date on the Gulf War vets. They're just not there.

15 It's just clearly and evident not there.


16 I don't know if you people remember the

17 oil well fires, I don't know if you saw these copies,

18 I don't know if you can remember, but being a full-

19 time fire fighter in any kind of smoke you're going to


20 have all kinds of health effects. And I don't care --

21 we were over there in three miles visibility of smoke.

22 I have government reports from the Department of


23 Defense stating that we were there in three miles

24 visibility. That's health effects.

25 I was just in a fire two years ago for two



76

1 years and I had smoke inhalation. Well, it's a


2 different -- little bit different chemicals in that,

3 but -- and that come out at my blood tests at the VA.

4 It's right here. It's in my medical records. It's

5 not hidden. It's not top secret. But when I came


6 back from that Gulf War I have not been the same.

7 I've been about seventy-five percent strength. I just

8 don't feel good. I don't feel right. I've got


9 headaches. I've got problems with my stool. I got

10 nerve damage. They tell me I'm fine when I go for my

11 compensation hearing. There's nothing wrong with you.

12 Nothing. They say I'm a walking time bomb on another


13 exam.

14 Do you have any questions?

15 CHAIRWOMAN LASHOF: Are there questions?


16 DR. TAYLOR: Yes. How long was your tour

17 of duty in the Gulf?

18 MR. BRYAN: Four months.

19 DR. TAYLOR: Four months. And ---


20 MR. BRYAN: Plus I did a month before,

21 December of '90, a secret operation down in Savannah,

22 Georgia, loading the ships.


23 DR. TAYLOR: And you went to the VA and

24 received treatment for ---

25 MR. BRYAN: Yes. I'm still presently



77

1 right now, it's been four years now, and they're just


2 finding major problems, and I'm concerned about that.

3 This is four years later.

4 I'd like to give you this package here.

5 CHAIRWOMAN LASHOF: Yes. That will be


6 fine.

7 I just wanted to point our, I think you

8 held up a report that you referred to as our report,


9 and I think that was the ---

10 MR. BRYAN: Federal activities related to

11 the health of Persian Gulf veterans?

12 CHAIRWOMAN LASHOF: Yes. That's the


13 coordinating board's report.

14 MR. BRYAN: Well, even still, you people

15 should all ---


16 CHAIRWOMAN LASHOF: Our role is to look at

17 all of these, and we will be dealing with all of that.

18 A copy of our interim report is available at the desk

19 outside.


20 MR. BRYAN: And I want to let the public

21 know if they're going to put it in the paper that

22 Russia has been dumping nuclear waste in the oceans


23 for years and we want to stop that. Nuclear waste,

24 that could be another chemical that's in that area.

25 CHAIRWOMAN LASHOF: Thank you very much.



78

1 MR. BRYAN: Thank you.


2 CHAIRWOMAN LASHOF: Diane Dulka.

3 MS. DULKA: Good morning.

4 I spoke to you in October. Let me refresh

5 your memories. I'm sure you don't remember why I was


6 here.

7 During my last visit many of you seemed

8 concerned about the issue of benzene. They were


9 spraying the Iraqi prisoners with it over in Saudi.

10 Many of you were unaware of this practice.

11 Has the Committee done any investigating

12 into it or learned anything new about it?


13 CHAIRWOMAN LASHOF: Yes. Andrea, do you

14 want to -- we did look into it, and it was lindane.

15 DR. TAYLOR: It's lindane, yes. And it's


16 a pesticide. There are some American industrial

17 hygiene studies that show that there may be some risk

18 to persons exposed if they're not wearing the proper

19 protective equipment.


20 MS. DULKA: Right. Now, were you aware

21 that the MP's were spraying these in enclosed tents

22 with no masks or protective gear?


23 DR. TAYLOR: No, I wasn't aware of that.

24 MS. DULKA: Powdered benzene in

25 pressurized cans.



79

1 DR. TAYLOR: No.


2 MS. DULKA: That's one of the issues I

3 wanted to bring up here today.

4 It is an FDA-approved substance for the

5 purpose of delousing prisoners, but it also has very


6 strict regulations on its proper use. Now, the MPs

7 were never instructed on proper use.

8 I also went back and did some research on


9 benzene, which lindane is a form of benzene. Now, I

10 went back, and all the service personnel were inhaling

11 benzene through the oil fires also. Benzene is a

12 large chemical in the oil.


13 According to Dr. -- it's Aksoy -- "Benzene

14 carcinogencenity. Benzene toxicity can occur anywhere

15 from minutes after inhalation to over several years of


16 low exposure inhalation. Benzene toxicity produces

17 initial complaints such as headache, dizziness,

18 nausea, vomiting and loss of appetite."

19 Many of these symptoms were experienced by


20 our service personnel while in the Gulf.

21 In the book he lists study after study

22 which as proven benzene exposure causes cancer in many


23 forms. Benzene has become a major concern for anyone

24 in the Gulf during the war, whether it be a veteran or

25 a volunteer organization.



80

1 As I stated on many occasions, the VA is


2 not including cancer statistics in their figures. I

3 have enclosed a letter from Susan Mather of the VA.

4 Her letter states: "Cancer caused by exposure does

5 not occur until between five and thirty years after


6 exposure." This is the basis by which the VA is

7 denying Gulf War veteran claims when they have cancer.

8 Now we have passed the five-year point, so


9 one would assume that the Gulf War veteran who

10 develops cancer now would have a valid claim and be

11 approved. Now the VA is stating that these veterans

12 no longer have a claim because they didn't produce


13 symptoms before the two-year presumptive period.

14 Therefore, the VA is not recognizing any

15 cancer case whatsoever, as far as the Desert Storm


16 veterans are concerned.

17 Now, referring back to the five- to

18 thirty-year window which Susan Mather stated in her

19 letter. I'm not really sure where this information


20 was received, but according to the doctor in the book

21 that I read, which I've enclosed copies of it, and

22 several other experts that are also in the book, after


23 toxic exposure to benzene, cancer can develop as soon

24 as four months after exposure.

25 I believe the five- to thirty-year window



81

1 that she's referring to refers back to Agent Orange


2 laws and radiation poisoning, which has no bearing on

3 a Desert Storm veteran. And I don't understand why

4 they're using Agent Orange laws to evaluate claims by

5 Desert Storm veterans when Desert Storm veterans have


6 specific laws for them.

7 So, it gets a little bit confusing.

8 Okay. Now getting back to the VA


9 statistics. Some very disturbing information was

10 brought to my attention. According to a reliable VA

11 source, the VA is now including all Gulf War era

12 service members in their statistics, therefore


13 slanting the figures with people who were not even in

14 the Gulf. Now, we are now five years after the year.

15 Out of all of the studies and research and


16 medical care given to these veterans, I have not seen

17 anyone go after the cause of these problems. The

18 veterans have been treated with drugs to relieve their

19 symptoms. I have not seen any program which tests the


20 fatty tissue of these veterans.

21 Has there been anything that tests a fatty

22 tissue of any of these veterans that anybody's aware


23 of? No?

24 DR. CUSTIS: Not that I'm aware of.

25 MS. DULKA: Okay. I didn't think there



82

1 was. Okay.


2 Is there any study being done to detoxify

3 these veterans that you're aware of? No?

4 DR. TAYLOR: I'm not aware of anything.

5 MS. DULKA: Okay.


6 DR. TAYLOR: I'm not certain I understand

7 what you mean by "detoxify."

8 MS. DULKA: Detoxify. Remove any chemical


9 agent in their body, or try to. Okay. No? Nothing?

10 Okay.

11 If there was a chemical accident, say, at

12 Dow Chemical, persons involved in the accident would


13 immediately be put through a detoxification program.

14 These chemicals would be removed from the body; damage

15 would be limited because of the amount of time that


16 the chemicals would have remained in the body.

17 Now, because these people are veterans

18 they are treated like second class citizens. Any

19 other group would have had answers by now and would


20 have been treated years ago.

21 In closing I would like to let you know

22 that I am tired of waiting for the government to


23 research this to death. I have taken on a study of my

24 own which has started a pilot program to try to

25 detoxify some of these veterans. I will publish the



83

1 results when the study is complete. At least it is a


2 start.

3 There is one more point I would like to

4 make. Before the Gulf War I was a wife, a mother and

5 a part-time realtor. Since the Gulf War I have become


6 mother, father, widow, fund-raiser, researcher,

7 veteran advocate and many more. Why has it become the

8 veterans' responsibility to provide complete proof of


9 any claim made to the VA?

10 In my case, for example, I've had to

11 become a cancer expert, benzene chemist, along with

12 learn and interpret Gulf laws and try to close some of


13 the VA loopholes which they hop through so frequently.

14 The veterans have become the police for the VA.

15 Thank you.


16 CHAIRWOMAN LASHOF: Thank you.

17 Any questions?

18 DR. TAYLOR: You're saying that you've

19 started your own study on detoxify. I guess one


20 question that I have is, are you looking at the

21 specific chemical benzene or ---

22 MS. DULKA: No.


23 DR. TAYLOR: --- are you looking at ---

24 MS. DULKA: All chemicals.

25 DR. TAYLOR: All chemicals.



84

1 MS. DULKA: All chemicals, toxins and


2 pesticides that they were exposed to in the Gulf.

3 DR. CUSTIS: What's the technique you're

4 referencing?

5 MS. DULKA: They're using a


6 sauna/oil/vitamin/exercise program. It can go

7 anywhere from two weeks to forty-five days.

8 DR. CUSTIS: That's a detoxifying process?


9 MS. DULKA: I'm sorry?

10 DR. CUSTIS: And that is a detoxifying

11 process you're describing?

12 MS. DULKA: Yes. It's used in Europe.


13 They're doing it now with the Chernobyl children that

14 were exposed to radiation. They're using it in France

15 and Italy and Canada.


16 CHAIRWOMAN LASHOF: Do you have

17 information on that process?

18 MS. DULKA: Not with me, no, I don't.

19 CHAIRWOMAN LASHOF: Would you send that to


20 the Committee, please?

21 MS. DULKA: Sure.

22 CHAIRWOMAN LASHOF: We would like to see


23 it.

24 MS. DULKA: I will. I sent my first

25 veteran out a week-and-a-half ago. He's the first one



85

1 to go through the program.


2 CHAIRWOMAN LASHOF: Where is the program

3 being carried out?

4 MS. DULKA: It's out in California.

5 CHAIRWOMAN LASHOF: Pardon? In


6 California?

7 MS. DULKA: It's in California, yes. I've

8 set up housing out there through other veteran


9 families so that the veterans can stay in other

10 veterans' homes while they're there going through the

11 programs.

12 CHAIRWOMAN LASHOF: Well, we would


13 appreciate receiving information about the program,

14 where it is, what's involved, and so on.

15 MS. DULKA: Sure.


16 CHAIRWOMAN LASHOF: Anything else?

17 DR. TAYLOR: Have they seen any results

18 from that?

19 MS. DULKA: Oh, no. We just started a


20 week-and-a-half ago. Oh, no. It's taken me that long

21 just to be able to put it together. I started working

22 on it in September and just to try to even get


23 funding, because it's all got to be privately funded.

24 DR. TAYLOR: The veterans that are in your

25 program or that are coming into your program, are you



86

1 -- have any of them been diagnosed with any specific


2 cancer or ---

3 MS. DULKA: No. If they ---

4 DR. TAYLOR: --- symptoms, or ---

5 MS. DULKA: No. If they've been diagnosed


6 with any cancer they cannot participate in the

7 program. Anything else, any type of kidney failure or

8 urinary tract problem or cancer, they cannot go


9 through the program. Anything other than that they

10 can. The program is modified, it's medically

11 monitored. There is a Gulf War protocol set up,

12 medical protocol.


13 CHAIRWOMAN LASHOF: Okay. Thank you very

14 much.

15 MS. DULKA: Thank you.


16 CHAIRWOMAN LASHOF: John Chestna?

17 MR. CHESTNA: My name is John Chestna. I

18 was stationed in Saudi Arabia from March 7th -- August

19 17th of 1990 to March 28th of 1991. I'm just going to


20 read a letter that I wrote to the VA Regional Office,

21 and also I sent one to Mr. Clinton, Joseph Kennedy,

22 Boston Globe, Senator Donald Riegle, and WBZ Channel


23 4.

24 "At present I am awaiting the outcome of

25 my compensation claim for Persian Gulf Syndrome which



87

1 was filed on October 17th, 1994. I'm a Persian Gulf


2 veteran deployed to Saudi Arabia-Kuwaiti theater with

3 1st Combat Engineer Battalion, Support Company,

4 Utility Platoon, from August 17th, 1990, to March

5 28th, 1991.


6 "During this time I had been exposed to

7 many things, including the handling and long-term

8 exposure to petroleum products and smoke, pesticides,


9 and strongly believe chemical weapons as well. The

10 anthrax and botulinum vaccines and the bromide pills

11 which were stated as being experimental were

12 administered to myself and my fellow Marines.


13 "There has been many drastic changes in my

14 health during my service in the Persian Gulf and since

15 my return home, all of which have been documented in


16 either military, VA or local hospital health records.

17 This illness which I have been stricken with has

18 stunted my progress in pursuing my career in music as

19 a musician due to my memory loss, shooting pains in my


20 arms, shoulder pains, joint pains, muscle aches, and

21 being in a constant state of fatigue.

22 "These and many other symptoms are also


23 the cause of being laid off from a job --" As it

24 stands now I'm unemployed; I've lost three jobs

25 because of this. "-- and the continual missing of



88

1 days from work due to the constant decline of my


2 health. This prevents me from even spending quality

3 leisure time with my fianc‚e and daughter, and I am no

4 longer able to completely physically engage in the

5 sport of hockey or the league in which I belonged."


6 And this letter was July 4th, 1995. Since

7 then my health has been on a continued downhill run.

8 CHAIRWOMAN LASHOF: Are you under medical


9 care now ---

10 MR. CHESTNA: Yes.

11 CHAIRWOMAN LASHOF: --- with the VA or

12 private?


13 MR. CHESTNA: I'm under Dr. Gordon's care.

14 CHAIRWOMAN LASHOF: Under Dr. Gordon's

15 care.


16 Are there other questions?

17 What was your occupation?

18 MR. CHESTNA: I was purifying water,

19 ma'am. If I can show you a few pictures here?


20 (Photos shown to the Committee.)

21 These are kind of bad pictures of rashes

22 that I've had. And -- I'm not going to disrobe, but


23 I have rashes down my sides right now.

24 That is -- that's what I was doing. Water

25 purification.



89

1 CHAIRWOMAN LASHOF: Purification in


2 Kuwait, and ---

3 MR. CHESTNA: This is the oil that came

4 in.

5 (Pause.)


6 These are also pictures of the smoke.

7 That's during the day. This is also during the day.

8 (Pause.)


9 I believe this is a depleted uranium

10 weapon.

11 CHAIRWOMAN LASHOF: Okay. Thank you very

12 much. We'll look at them and return them to you.


13 MR. CHESTNA: Thank you.

14 CHAIRWOMAN LASHOF: If there are no other

15 questions, we will take a break and resume the meeting


16 at 10:45 so that we -- as you know, today is devoted

17 to hearing a discussion and presentations about the

18 various federally-funded research dealing with the

19 environmental hazards, and we have a series of


20 presentations by the research centers about their

21 activities, and the rest of the day will be devoted

22 mainly to that, with some discussion at the end of the


23 day on the outreach from the Department of Veteran

24 Affairs.

25 But we'll take a break now until till



90

1 10:45.


2 (Whereupon, a recess was taken.)

3 CHAIRWOMAN LASHOF: There are some others

4 who have asked to testify, so we will take a few

5 minutes before we resume the agenda as printed and


6 allow them to do so.

7 The first one is Mr. Larry McInnis.

8 MR. McINNIS: Good morning, Madam Chairman


9 and panel. My name is Laurance McInnis. I live in

10 Hull, Massachusetts. I'm a former Marine, active. I

11 stayed in the Reserves more or less as a hobby. Used

12 to go one weekend a month, play some cards, have a


13 couple of beers, meet some new friends, talk about

14 different things, and do some training. And at that

15 time I thought it was good training, I thought it was


16 meaningful, and I could pass on a lot of information.

17 Well, little did I realize that our one

18 weekend a month and two weeks during the summer turned

19 into a major deployment over in Saudi Arabia, and I


20 was probably one of the few grandfathers over there

21 with General Schwarzkopf.

22 I was a truck driver over there, heavy


23 equipment, and we delivered medical, water, supplies,

24 mostly ammo.

25 January 17th our whole thing changed. We



91

1 were assigned to the 82nd Airborne. 82nd Airborne


2 were not going to jump in, and they didn't have the

3 equipment to bring them in in carriers, so they turned

4 our company and another small, medium truck company

5 from Teaneck, New Jersey, into a mechanized regimen,


6 and we sandbagged our gas tanks, we sandbagged our

7 trucks, our floor boards, our beds, put a .50 caliber

8 machine gun on the front, two squads of 82nd Airborne,


9 fully armed, ready for combat in the rear, and across

10 the desert we went into Iraq. We spent three-and-a-

11 half weeks in Iraq.

12 I come out of there with an injured back,


13 which I still have, which I've been compensated for

14 with twenty percent. Upon returning home I was put on

15 medical hold. After the rest of the company was let go


16 I was on medical hold for over two years, which made

17 me like a rip-roaring maniac. In fact, I was so bad

18 I got in an argument with a chaplain on the stairs of

19 the chapel up at Fort Devens, and that's not like me.


20 Little did I know that I was a victim of

21 PTSD, which I've been told that it's pretty deep, it's

22 pretty serious, and it's a hundred percent.


23 Also I have spent time in many of the New

24 England VA's from White River Junction to Newington,

25 eight months in Northhampton for multiple chemical



92

1 sensitivity, respiratory problems, bleeding stools.


2 I could go on and on and on. I'd sound like all the

3 other veterans here, and we all have similar problems.

4 My problem has just been diagnosed from a

5 cyst on my pituitary gland to a tumor.


6 I had plans to retire and tour the country

7 with my wife. My plans have kind of like gone down

8 the drain.


9 What I'd really like to say is I'd like to

10 speak for the other veterans. We first started the

11 post Gulf War Registry at the Jamaica Plain VA in

12 Boston. You could walk in at any time and you could


13 get your examination.

14 A lot of the younger men -- I know I only

15 have three minutes -- I'm going to go on a little bit


16 longer. I'm sorry. -- but a lot of the younger

17 troopers, they were asking me how can you get so bad

18 in a hundred-hour war? It wasn't a hundred-hour war;

19 it was a little bit longer than that. It come out in


20 the newspapers a hundred-hour war.

21 How can people get so screwed up in a

22 hundred hours, right? We lost, even if it was one


23 person, we lost troopers over there. We had feelings

24 over there. We seen things over there that people

25 have never seen before. We experienced things over



93

1 there that people never experienced before.


2 What I'm saying is on the registry when we

3 come home we could walk in any time and you could have

4 your examination and they'd tell you it was stress, go

5 down to Court Street. That's what they told you.


6 Right? They had no inclination that it was anything

7 else involved.

8 Later on we got a little teeny program


9 going through the Vet center in Boston and a Miss

10 Shirley Jackson from the VA, and what we did is we put

11 together a thing on Saturdays where a lot of the

12 doctors from the VA volunteered their time to be there


13 on Saturday, and we ran this two Saturdays -- not in

14 a row -- but two Saturdays within a certain time

15 period, and we had over a hundred veterans, and


16 everybody had a certain time to come in, and we had a

17 hundred veterans on a Saturday -- over a hundred

18 veterans on each one of those Saturdays compared to

19 this dribbling in thing.


20 Now if you go over to the VA and you ask

21 to get an examination to register for the Persian Gulf

22 Syndrome it takes you three months. Why does it take


23 three months? The reason that I understand is that

24 there's only one doctor over there one day a week

25 doing these examinations. Why is there only one



94

1 doctor over there doing these examinations?


2 You know, it's funny, we seem to have

3 money for different things. I picked up a small piece

4 in the paper the other day about our former Secretary

5 of Defense Dick Cheney, and there was something about


6 where he was the new CEO/President of a construction

7 unit, and all of a sudden they landed a contract over

8 in Bosnia to build a barracks for $328 million. And


9 this little teeny piece in the paper really struck me

10 kind of strange.

11 If we can spend $328 million on a barracks

12 which is an A No. 1 target for terrorists, right, and


13 not only that, but we have units over there, we have

14 engineer units that can also build this barracks for

15 the money that they are getting for putting in their


16 24-hours duty, right, we got to go outside and spend

17 $328 million where we can better use that money for

18 doctors and to find out really what has gone awry on

19 these younger troopers.


20 Myself, like I say, I'm older, right, and

21 I've come to a reasoning within myself that there's

22 really not too much left, and I'm sorry to take up


23 your time, but I had to say this.

24 Thank you.

25 CHAIRWOMAN LASHOF: Thank you.



95

1 Are there any questions?


2 MR. CASSELLS: Mr. McInnis, which VA

3 hospital are you referring to when you say it's one

4 physician on one day per week?

5 MR. McINNIS: What I understand it's the


6 Jamaica Plain VA. I was there yesterday myself and

7 now they've got me going to see a nutrition doctor

8 because when I come home from the Gulf I weighed 155


9 pounds, injured my back, I've had two operations on my

10 back since I've been home, and I have put on like a

11 hundred pounds. I contribute it to inactivity and I

12 don't eat that much. You can look at me and laugh,


13 but it's true, I don't eat that much.

14 I'm also on medication. I'm on heavy

15 doses of Prozac and I can't even think of the other


16 three.

17 MR. CASSELLS: You said you had been

18 diagnosed as a cyst on the pituitary, perhaps a tumor.

19 What diagnosis are you carrying now? For what are you


20 being treated?

21 MR. McINNIS: I'm being treated for PTSD

22 at Court Street and also at JP and Boston, and I am


23 being treated for prostate, I'm being treated also for

24 the tumor on my -- the pituitary, bleeding from the

25 rectum. It's a horror list, it really is. I'd just



96

1 be -- I do not have anything written. That was


2 another one of my complaints this morning is that I

3 don't think there was enough advertisement on this

4 Committee meeting going out to the -- I look around

5 and I see doctors and whatever and I see a few


6 troopers out there, and I would have liked to have

7 seen something posted at the VA, which I didn't.

8 The Vet Center last night -- I go once a


9 week to the Vet Center in Boston, and it seems to be

10 my only relief is talking to other vets that were

11 actually in similar situations, and it's helpful.

12 MR. CASSELLS: Thank you.


13 MR. McINNIS: I'm sorry. Thank you.

14 CHAIRWOMAN LASHOF: Thank you. Thank you

15 very much.


16 Bobby Lawson?

17 MR. LAWSON: Hello. Good morning. My

18 name is Robert Lawson. I'm a Persian Gulf veteran

19 stationed at 23rd Field Artillery in Germany. I was


20 sent to the Gulf on January 1st, 1991, to June 16th.

21 Upon my return home my parents noticed a different

22 variety of things wrong with me and I went to


23 Manchester VA to meet with Dr. Victor Gordon who has

24 been treating me ever since.

25 I've been a variety of different VA



97

1 hospitals. One of the VA hospitals which I was seen


2 by Claudia Miller, an environmental specialist down in

3 Houston, Texas, and I was diagnosed with MCS and

4 organic brain syndrome and which I was also put on

5 Prozac saying nothing's wrong with me. Upon my return,


6 Dr. Victor Gordon and my mother took me off of it

7 saying it's not curing the problem.

8 Since my return home from April 13th,


9 1992, I have been to at least ten different physicians

10 and no one can still tell me what's wrong with me.

11 I've been experiencing the following things since my

12 return and type of financial assistance from the VA.


13 Fatigue, depression, memory loss, back pain,

14 headaches, night sweats, nightmares, unexplained

15 bruises and rashes, joint/muscle pain, chronic


16 diarrhea, stomach pain, sensitivity to odor and

17 smells.

18 As I sit here today explaining my tour of

19 duty of the war, I realize that my personal war is not


20 over because I don't have my health. Many veterans

21 like myself are sick and in need of a reason why, yet

22 our government chooses to ignore this problem.


23 Thank you.

24 CHAIRWOMAN LASHOF: Thank you.

25 Are there any questions for Mr. Lawson?



98

1 MAJOR KNOX: Are you receiving any


2 compensation from the VA at this time?

3 MR. LAWSON: No, I'm not.

4 MAJOR KNOX: Were you given a referral to

5 one of the other VA's after you had your Persian Gulf


6 physical?

7 MR. LAWSON: I've been everywhere. I've

8 been flown to Texas. Senator Bob Smith flew me there.


9 I've been all over the place. Just waiting. I get a

10 letter in the mail every day. We're looking at your

11 file. I've already been diagnosed with two things

12 already.


13 DR. TAYLOR: That's the multiple chemical

14 sensitivity.

15 MR. LAWSON: Which is Claudia Miller. And


16 I've seen by Dr. Thane, organic brain syndrome, which

17 I believe is brain damage, my left optical region.

18 DR. TAYLOR: Where were you stationed in

19 the Gulf?


20 MR. LAWSON: Two-Third Field Artillery in

21 Germany.

22 DR. TAYLOR: And what were your


23 responsibilities?

24 MR. LAWSON: I was a tanker, front line.

25 DR. TAYLOR: Did you notice any specific



99

1 environmental exposures similar to what has already


2 been ---

3 MR. LAWSON: Upon our arrival there there

4 was dead camels, dogs, cats.

5 DR. TAYLOR: Same thing.


6 MR. LAWSON: All over the place.

7 Unbelievable.

8 CHAIRWOMAN LASHOF: All right. Thank you


9 very much.

10 The next item on our agenda is a

11 discussion of our Clinical Syndromes Panel meeting in

12 which we were planning to report on that meeting to


13 the rest of the Committee. Unfortunately, a number of

14 members of our Committee were unable to attend today's

15 meeting and actually of those of us that are here,


16 most of us were at the meeting in San Antonio. But I

17 think we should spend some time reviewing the summary

18 that has been prepared, and it's in your book at Tab

19 B, and there's a brief summary that's there prepared,


20 and I don't really want to read the whole summary.

21 But just let me go through it relatively

22 briefly and let us focus on the recommendations.


23 The first presentation we heard in San

24 Antonio in addition to, of course, the testimony from

25 the veterans, was a presentation concerning multiple



100

1 chemical sensitivity. We reviewed the case definition


2 of multiple chemical sensitivity and, unfortunately,

3 there's still no real consensus on a case definition,

4 although there are several proposed, and some general

5 agreement among those that have been looking into this


6 issue.

7 The symptoms are relevant to many

8 different organ systems, and including central nervous


9 system symptoms being fairly common.

10 The points were made in the testimony that

11 there's marked overlap between the systems of MCS and

12 what has been referred to as undiagnosed illnesses in


13 the Gulf War veterans. A number of people who were

14 testifying pointed out that many of the symptomatology

15 presented in the CCEP are very similar to that in


16 multiple chemical sensitivity and it was their

17 position that this is what many of the Gulf War

18 veterans were suffering from.

19 We had some discussion about diagnostic


20 procedures and the fact that there is no good way

21 other than by history to make a diagnosis of multiple

22 chemical sensitivity. There's very little data


23 available as to its prevalence in the general

24 population. It's prevalence in the Gulf War veterans,

25 we have only anecdotal reports on people who have



101

1 consulted, Dr. Claudia Miller, who presented. She's


2 seen about a hundred patients at the Houston VA and

3 she reported on her first fifty-nine consultations.

4 We listened to discussions of treatments

5 and the major statement, I think, from Dr. Miller


6 rather summed it up, that we really don't know how to

7 treat multiple chemical sensitivity.

8 We'll be dealing with somewhat more on


9 this issue in some of our presentations today on the

10 environmental issues.

11 And it was pointed out that there is

12 ongoing research being supported, and as I say, we'll


13 be hearing from that today.

14 I think the issue before us is what

15 further steps we would like staff to take in regard to


16 multiple chemical sensitivity and its relationship.

17 On your tab we've indicated that staff

18 should certainly continue to evaluate the East Orange

19 VA research on MCS, as well as continuing to keep


20 abreast of the peer reviewed medical literature to

21 determine if trials or validated diagnostic methods

22 and beneficial treatment techniques are, indeed,


23 published.

24 Of those who were at the meeting, are

25 there other things that you would like to add to this



102

1 or suggestions that you feel need to be followed up


2 on?

3 Then I'll ask those who weren't there if

4 they have further questions.

5 MAJOR KNOX: I think the staff has done a


6 very good job of summarizing that.

7 CHAIRWOMAN LASHOF: Are there any

8 questions from -- Don, you weren't there, and Art


9 wasn't there, right?

10 DR. CAPLAN: I was not.

11 CHAIRWOMAN LASHOF: Do you have any

12 further questions, or is this pretty well -- any areas


13 that you'd like to emphasize we look further into?

14 Okay.

15 The next area that we had presentations on


16 was on chronic fatigue syndrome. Again, the summary

17 in your book, we go through the case definition and

18 CDC had a consensus case definition for chronic

19 fatigue syndrome. And there does appear to be a


20 marked overlap of the symptoms between chronic fatigue

21 syndrome and undiagnosed illnesses. And as you

22 remember at the San Francisco meeting when CDC


23 presented their data from their first initial study of

24 the Pennsylvania veterans they felt that the

25 similarity was great and that it was -- and they



103

1 postulated that we were looking at a form of chronic


2 fatigue syndrome in the veterans.

3 Again, it's a diagnosis by exclusion.

4 Again, there are no confirmatory lab tests, and

5 clinical evaluation as recommended by CDC is listed


6 here.

7 CDC has come up with some estimate of its

8 incidence in the general population, coming up with an


9 estimate of 98 cases per hundred thousand, or a tenth

10 of a percent in the general population. This was from

11 a study in Seattle in 1995, and which was fairly rigid

12 or stringent criterion. It may, indeed, be higher


13 than that in the general population, especially, of

14 course, among those who seek care.

15 The prevalence of chronic fatigue in the


16 Gulf War veterans is really unknown at this time. If

17 one looked at the first 10,000 patients evaluated at

18 the CCEP, it was only .42 percent that met the 1994

19 CDC case definition, but even at that level, that's


20 four times greater than the population survey that CDC

21 had done in the past.

22 We should have further information on that


23 in the next week or so when DOD will be releasing

24 their next analysis of the CCEP. That should be

25 released on April 2nd, I believe, roughly.



104

1 MS. NISHIMI: I don't believe they've


2 announced a firm date yet.

3 CHAIRWOMAN LASHOF: I see. Okay. I'm out

4 of order.

5 There was some discussion of treatment


6 techniques. Dr. Ganns presented several approaches to

7 therapy, including the use of anti-depressants and

8 cognitive behavior programs.


9 Again, there is ongoing research supported

10 by DOD and the VA. VA is funding research on CFS

11 among patients enrolled in the registry and at the

12 Environmental Research Center in Boston and in East


13 Orange, and we'll hear more about that today when we

14 hear that testimony.

15 Again, the next steps, the staff will


16 again continue to evaluate the research and keep

17 abreast of what research is going on, as well as the

18 peer reviewed literature.

19 Are there other issues that anyone feels


20 have come up that we need to further pursue?

21 (No response.)

22 Are there any addition ---


23 Yes, Art.

24 DR. CAPLAN: Just one thing that's come up

25 a number of times about the chemical exposures, less



105

1 so with chronic fatigue, but it's just asking the


2 staff to make sure that the research centers that are

3 looking at these and the other syndromes are doing

4 what they can to monitor cancer rates, complications,

5 other things that people think may be associated with


6 the multiple chemical sensitivity diseases, and then

7 in some sense to make sure that they're getting all

8 the diagnostic and investigatory studies done that


9 might help establish an agent.

10 I mean, we've heard a few times about

11 fatty tissue biopsies, PET scans and so on, and it

12 would be, I think, important for the staff to tell us


13 whether that's practical, possible, useful, what the

14 state of the art there is.

15 So, more the associated claims that have


16 been made about other consequences. I'm thinking here

17 more the multiple chemical sensitivity than I am the

18 CFS, but for both. But for both.

19 CHAIRWOMAN LASHOF: Thank you. Staff will


20 note that.

21 We then had an excellent presentation on

22 fibromyalgia, its case definition, again, an overlap


23 of symptoms with the undiagnosed illness in the Gulf

24 War veterans. Again, there are no confirmatory lab

25 tests. Prevalence in the U. S. population is



106

1 estimated to be between one to two percent, and the


2 prevalence of fibromyalgia in the Gulf War veterans is

3 unknown at this time. And much of the prevalence for

4 any of these conditions we really won't know very much

5 about until the larger scale epidemiologic studies are


6 completed.

7 Treatment techniques are summarized here

8 and include decreasing pain, mainly symptomatic.


9 And there is ongoing research at the

10 Portland VA and we'll be hearing from them this

11 afternoon.

12 The recommendations are similar to the


13 others, that we continue to keep abreast of the

14 research going on that we know has been funded by DOD

15 but that we also try to keep abreast of the peer


16 review medical literature and keep in touch with the

17 scientists that are working in this area whom I'm sure

18 will keep us informed of any new developments.

19 Are there any additions to that summary


20 that any of the people who were there would like to

21 ask?

22 If not, any other suggestions that anyone


23 has?

24 All right. We -- the next area that was

25 covered at our clinical syndrome panel was a



107

1 presentation from Dr. Edward Hyman on bacteria in the


2 urine. He talked about a technique that he has

3 developed for identifying a form of streptococcal,

4 systemicoccal disease, he calls it, and a methodology

5 for culturing the organisms which he really did not


6 present in any detail, described his methodology,

7 merely stated that he was using an earlier methodology

8 that most laboratories weren't using. And he claimed


9 to be able to make a diagnosis in veterans of this but

10 he didn't present any systematic study that one could

11 draw any conclusions about the percentage of people

12 who were infected.


13 He has been treating patients with

14 antibiotics and claims to have success.

15 There has been an issue concerning the


16 funding of his research. Actually, he had made

17 contacts with his congressman and there was money

18 initially appropriated or has been appropriated in the

19 DOD budget to fund further work of Dr. Hyman but DOD


20 has not released that funding because he has not had

21 a protocol approved by an institutional review board

22 and they are not willing, appropriately so, I believe,


23 to release funding for any studies that haven't been

24 through an institutional review board and have been

25 approved from both their scientific and ethical



108

1 aspects, and he's been offered many opportunities and


2 will continue to be offered the opportunity to present

3 a protocol that has received approval from any IRB

4 anywhere in the country that he can find.

5 And as far as that goes, we will just keep


6 abreast of whether or not he is funded and whether he

7 is able to obtain approval.

8 Anyone want to add anything to that? Any


9 other suggestions?

10 DR. CUSTIS: I was just wondering, was Jay

11 Sanford's participation limited to helping him with

12 his protocol, or is he, too, involved in the search


13 for this bacteria?

14 CHAIRWOMAN LASHOF: He has not -- as I

15 understand it, he's been one that's been -- he's --


16 that Dr. Hyman's referred to him to get his

17 consultation and to help him with the protocol, but he

18 has not been involved in the research. I believe

19 that's correct. Is that correct? Yeah. Dr. Sanford


20 is obviously well known.

21 Dr. Garth Nicholson presented his theories

22 concerning the etiology of the Gulf War veterans


23 illness being due to mycoplasma infection. Dr.

24 Nicholson is a Ph.D. and his work primarily in cancer

25 research, and that's his area of expertise, and he is



109

1 a professor at the University of Texas but has gotten


2 -- taken up this issue, as I would gather, really a

3 side issue from his mainstream funded research which

4 is in cancer biology.

5 He presented information about cases that


6 he has seen and his being able to identify mycoplasma

7 species and has also reported this in the literature.

8 He has developed a new gene tracking test for this and


9 has treated patients with doxycycline and other

10 antibiotics and claims to have results.

11 Data on the prevalence of this infection

12 in the U. S. population is estimated primarily to be


13 seen among homosexual men with AIDS and in HIV-

14 positive. Asymptomatic homosexuals also have had

15 relatively high rates. It has not been seen as much


16 in IV drug users, HIV-positive drug users, or

17 hemophiliacs.

18 The prevalence of mycoplasma in Gulf War

19 veterans is not known. Dr. Nicholson has not carried


20 out any kind of random survey to identify it in a

21 large sample; rather, he's worked with specific people

22 who've come to him with the symptomatology and have


23 been referred to him and whom he feels he has been

24 able to identify this organism.

25 He has also applied for funding under the



110

1 DOD call for proposals. However, that has not been


2 approved, his funding had not been approved, and he

3 was still pursuing other sources of funding. CDC has

4 contacted him and have offered to send him samples to

5 perform a case control study where they could send him


6 blinded samples from people with illness and without

7 illness. He has felt that he doesn't have the lab

8 facilities to do that yet, but at the time of our


9 meeting in San Antonio there were still -- he was

10 still in contact with CDC and CDC, Dr. William Reeves,

11 have -- does want to pursue this with him, and

12 hopefully we will be able to have a more controlled


13 study from which better conclusions could be drawn.

14 We feel that the next step here is to

15 monitor the status of his potential collaboration with


16 CDC. We also will be reviewing other relevant

17 mycoplasma research and see whether any other groups

18 have undertaken research to confirm these findings.

19 Are there any other additions that anyone


20 would like to make concerning that?

21 Yes, Art.

22 DR. CAPLAN: Joyce, one of the things that


23 comes up from your hearing is that there clearly are

24 a lot of people with ideas about what might be causing

25 Gulf War illness syndromes from chemical sensitivity



111

1 to the bacteria to the mycoplasma theories, and I


2 think it's important that we urge staff to seek

3 comment and review as we can from independent sources,

4 because one thing I think the committee must do is

5 make sure that people understand why certain


6 diagnostic or treatment approaches that might be ideas

7 worthy of consideration aren't or are not being

8 aggressively followed. In other words, we don't want


9 to let the issue lie of why is somebody's idea not

10 being actively pursued.

11 And, so, to the extent we can do it, while

12 we're not a peer review body or an IRB, for that


13 matter, I'd like to see a section that draws that

14 together, because I think one of the sources of

15 distrust is that there's an issue that constantly


16 arises about whether a good idea is being squelched by

17 the scientific establishment or by the Defense

18 Department or whoever it is, and we need to make sure

19 that we go at that head on and explain here's where


20 the idea is, here's why people are cool to it, here's

21 what needs to be done to get it funded as responsible

22 stewards of taxpayer money on any scientific research


23 project would be expected to do, and so people are

24 assured that these ideas are not just being rejected

25 because they're being squelched.



112

1 CHAIRWOMAN LASHOF: I think that's a very


2 valid point, and it is one that I have talked with

3 staff about our need to know what kind of proposals --

4 as you say, we're not a peer review group, but we do

5 need to know what is the process DOD has been using in


6 putting out its RFPs, what kind of proposals have they

7 gotten, what process are they using for peer review,

8 what kind of feed back goes back to the scientists who


9 are turned down, and we need to have that analyzed for

10 us and presented to us, and staff are pursuing that at

11 this point.

12 Are there any other -- I think that --


13 that, I think, summarizes our clinical syndrome

14 meeting.

15 Okay. If there are no other comments on


16 that, we're just about on time, and we're ready to

17 move ahead with the federally funded research on

18 environmental hazards from the Boston group, the

19 Boston environmental hazard group.


20 (Pause.)

21 CHAIRWOMAN LASHOF: Dr. White, Dr.

22 Ozonoff.


23 (Pause.)

24 Who's going to start, Dr. White or Dr.

25 Ozonoff?



113

1 DR. WHITE: Dr. White's going to start.


2 CHAIRWOMAN LASHOF: Dr. White, welcome.

3 Welcome to both of you.

4 DR. WHITE: Thank you.

5 CHAIRWOMAN LASHOF: And would you just


6 tell us a little bit about your background and then

7 just launch into what you're doing.

8 DR. WHITE: I'm the Research Director of


9 the Boston Environmental Hazards Center. My training

10 is in neuropsychology. My field of expertise related

11 to public health is behavioral toxicology and

12 validation of behavioral test techniques. I'm a


13 Professor of Environmental Health at Boston

14 University, School of Public Health, and of Neurology

15 at Boston University, School of Medicine, as well as


16 Director of Neuropsychology at the Boston VA.

17 CHAIRWOMAN LASHOF: All right. Fine.

18 Thank you.

19 DR. OZONOFF: I'll introduce myself also.


20 CHAIRWOMAN LASHOF: Okay.

21 DR. OZONOFF: I'm Dave Ozonoff. I'm

22 Chairman of the Department of Environmental Health at


23 Boston University, School of Public Health. I'm a

24 physician. And my research specialty is in

25 environmental epidemiology, especially the effects of



114

1 toxic exposures on communities, hazardous wastes,


2 particularly in the past, and now Persian Gulf

3 veterans. I'm also Director of Boston University

4 Superfund Center, as well as being Medical Director of

5 the Boston Environmental Hazards Center.


6 CHAIRWOMAN LASHOF: Fine. We're anxious

7 to hear from you.

8 Go ahead, Dr. White.


9 DR. WHITE: It's very nice to be here.

10 Thank you for inviting us.

11 The Boston Environmental Hazards Center is

12 a cooperative center involving efforts from the Boston


13 VA and Boston University, School of Health, and Boston

14 University, School of Medicine. The center was formed

15 in response to the VA RFP for environmental hazard


16 centers specializing in research on Persian Gulf

17 illnesses.

18 We consider ourselves to be a basic

19 environmental hazards center. We do research,


20 methodologic and other research in environmental

21 health, and we are focusing our efforts during these

22 first five years on Persian Gulf-related problems.


23 Some of our research is directly with Persian Gulf

24 veterans and some of it involves basic science

25 questions related to issues related to Persian Gulf.



115

1 So, that's how we've set ourselves up.


2 Next slide, please.

3 This is sort of our organizational chart.

4 Our Assistant Director, Dr. Proctor, is here with me.

5 We have a group of core personnel, a group of


6 consultants, and we carry out a number of activities,

7 including research, training and consultation, and

8 across the bottom you see the six projects that we're


9 going to be talking about today that were part of the

10 original grant.

11 Next overhead, please.

12 I had a slide talking about our mission.


13 We see our mission to be basically research, which

14 we're going to talk about in very great detail today.

15 We also do training in environmental hazards issues,


16 and we also provide consultation to government

17 agencies on Persian Gulf-related issues and also other

18 issues in environmental health.

19 Next slide, please.


20 Our core staff is listed on this slide.

21 You've met myself and Dr. Ozonoff and Dr. Proctor

22 who's our Assistant Director. Our co-PI is the Chair


23 of Neurology at Boston University. We have a

24 biostatistician who spends forty percent of his time

25 in the center from the School of Public Health, Tim



116

1 Heeren; and an epidemiologist, Richard Clapp, whose


2 research you're going to hear about; an

3 immunotoxicologist, David Sherr, about whose research

4 you're also going to hear. Our trauma and PTSD

5 specialist Dr. Jessica Wolfe. An occupational health


6 specialist Dr. Lewis Pepper. Dr. Proctor's specialty

7 is environmental health.

8 We also have two advisory boards. Next


9 slide, please. One advisory board consists of -- is

10 what we call our community advisory board. It has

11 veterans, Persian Gulf era veterans, veterans group

12 staff, and staff from some of the local politicians.


13 In addition, we have a scientific advisory

14 board. Our scientific advisory board provides

15 feedback to us on what we're doing, and they also


16 provide advice in specialized areas. So, we can't

17 cover every part of health that might be related to

18 Persian Gulf, and we've enlisted a group of

19 consultants that can help us. These include -- these


20 are people from the VA, the Boston VA, and from Boston

21 University, School of Medicine and School of Public

22 Health.


23 So, we have Dr. Arbeit who's our

24 infectious disease specialist; Les Boden who works on

25 disability issues; David Burmaster in risk assessment;



117

1 David Christiani in environmental and pulmonary


2 medicine; Philippe Grandjean for our international

3 work; John Hayes in pathology, Howard Who in heavy

4 metals, Richard Letz in computerized assessment; Dr.

5 Post in PNS disorders; Dr. Robbins in radiology; Dr.


6 Rudders in immunology; Dr. Samowera in MRI; Dr. Snider

7 in pulmonology; and Dr. Wegman in environmental

8 medicine.


9 We also have some other specialized

10 consultants that we've been working with. George

11 O'Connor has been working on our pulmonary project;

12 Daniel Lieberman in helping with exposure assessment;


13 Dr. Paul working on reproductive hazards issues; Dr.

14 Rush is available for fetal and child health issues;

15 and Dr. Spangler for air pollution issues.


16 The next overhead contains a listing of

17 the six research projects that were funded when the

18 center was funded. It somehow got out of order. I'm

19 sorry.


20 The six research projects that we are

21 conducting, and we're going to describe them in some

22 detail, but just to give you an overview: Project 1


23 is a psychological study. The PI on it is Jessica

24 Wolfe. The co-PI is myself.

25 Project 2 is evaluation of neurological



118

1 functioning on which Robert Feldman is PI.


2 Project 3 is a cancer registry that Dr.

3 Clapp is PI for.

4 Project 4 involves evaluation of pulmonary

5 and immune function. Dr. Pepper is the PI on that.


6 We have an animal study of the aromatic

7 hydrocarbon receptor headed by David Sherr.

8 And a study of computerized testing which


9 I head.

10 We're going to talk about these each in

11 some detail.

12 The next overhead is kind of a complicated


13 one, but what I want you to see here is that we have

14 some related projects that are being carried out

15 through the center that were not part of the original


16 grant proposal. These include psychological studies

17 of a group of Persian Gulf veterans that were deployed

18 to Germany but not the Gulf. They're Gulf-era

19 veterans.


20 A study of treatment seekers, people who

21 think they're ill.

22 We have a sister study in New Orleans in


23 which the procedures from Project 1 are being carried

24 out.

25 And then we're -- we've just received some



119

1 funding to look at Gulf-era veterans who weren't


2 deployed at all, for the psychology studies.

3 And the same under pulmonary, we're going

4 to be looking at pulmonary and immune function in some

5 other subjects besides the Fort Devens cohort that we


6 described in our original grant proposal.

7 Next slide, please.

8 You're going to see this again. It just


9 shows you the progress to date. We've tested 166

10 subjects so far in the psychology study from the Fort

11 Devens sample. Thirty-six people have undergone

12 pulmonary studies and 18 people have been enrolled in


13 the aromatic hydrocarbon receptor study.

14 On the next slide you can see the subject

15 sample sizes so far in some of our other groups.


16 We've looked at 71 people in New Orleans, 50 people

17 who were deployed to Germany rather than the Gulf

18 during the Persian Gulf War, 60 Persian Gulf veterans

19 that came to our VA seeking clinical care. We've


20 recently received a grant from DOD in which we're

21 going to be looking at 200 Persian Gulf-era veterans

22 that are seeking treatment and 200 matched controls


23 that are not treatment-seeking and who were not

24 deployed.

25 I'm going to go on to start to talk about



120

1 the individual projects. I'm going to go on to start


2 to talk about the individual projects. I'm going to

3 talk about the psychology projects and the neurology

4 project, and David's going to talk about the pulmonary

5 studies, the AH receptor studies and the registry.


6 Project 1, the study of psychological

7 functioning in the Gulf War veterans is headed, as I

8 mentioned before, by Jessica Wolfe, with myself as co-


9 PI. We actually started this study back in '93

10 formally with some prior clinical funding through the

11 VA to look at the psychological functioning in the

12 Gulf War veterans and then expanded it a great deal


13 with this center grant.

14 The study has five aims: to examine

15 health symptom reporting patterns in our sample, to


16 examine the relationship between health symptoms and

17 neuropsychological test scores, to examine the

18 relationship between stress measures and

19 neuropsychological test scores, to examine the


20 relationship between environmental exposures and

21 neuropsychological test scores, and to examine the

22 relationship between post traumatic stress disorder


23 and neuropsychological test scores.

24 This study -- next slide, please --

25 emanated from an effort begun in 1991 by Bill Mark, a



121

1 chaplain who was greeting Gulf War vets when they came


2 back through Fort Devens. Jessica Wolfe worked with

3 him at that time and they did some studies of 2,949

4 veterans who came back through Fort Devens. A year

5 later -- a year to a year-and-a-half later 2,315 of


6 these same veterans were again interviewed, and I'm

7 going to show you what they -- what they went through

8 at the two times. And our study number 1 basically


9 focuses on this sample.

10 The study was set up to assess the

11 progression and course of adjustment to coming back

12 from the Gulf, and then we tacked on these other


13 things that we're doing now. We're now doing what we

14 call time three of the study.

15 The next slide shows you -- gives you a


16 description of what the Fort Devens cohort is like,

17 their mean age, education, gender, race, and service

18 type.

19 As you can see, we have a lot of guard and


20 reserve units in our Fort Devens sample.

21 The next slide shows you the data that

22 have been collected at the various times we've sampled


23 this group. Time one, we just looked at demographics

24 and a few PTSD, and combat exposure scales. We

25 expanded what was looked at at time two in 1992 to '93



122

1 to include a symptom -- health symptom check list. We


2 then used the symptom check list to help us choose

3 subjects for the current study.

4 Next slide, please.

5 The current study involves a number of


6 measures including a questionnaire, a

7 neuropsychological test battery, an environmental

8 interview that asks the veterans what they thought


9 they were exposed to in the Gulf, psychological

10 testing including a structured interview for DSM

11 diagnosis, and a PTSD scale that's given by a

12 clinician, and some other psychometric tests,


13 including basically some PTSD measures.

14 In addition to these measures, we have a

15 self-reported health symptom questionnaire that is a


16 check list on a questionnaire form that the Gulf War

17 veterans fill out. We then interview them, go through

18 the check list and we ask them in an open-ended way

19 what symptoms they think they have, and we review


20 their questionnaire with them.

21 Is there one that says "Non-Deployed Gulf

22 Group"?


23 As I mentioned before, we also have added

24 a group to this study. It's a group of National Guard

25 people from Maine who were deployed during the war to



123

1 Germany but not to the Gulf. We thought they would be


2 an interesting control group because they went through

3 some of the trauma associated with deployment, they

4 were active during the war, but they did not actually

5 go to the gulf and have the same exposures as the gulf


6 veterans.

7 So far we have tested 166 Fort Devens

8 subjects, and you can see on the next slide the


9 demographics of the various groups I've described.

10 Fort Devens, you also saw their age, education and

11 gender. New Orleans, the New Orleans sample is here,

12 and also the Germany-deployed sample which are


13 somewhat older than the Devens and New Orleans

14 samples.

15 The reason that the percent female is so


16 much higher than you saw on the original slide is that

17 we purposefully over-sampled to try to get enough

18 females to look at gender as an independent variable,

19 so, there is more females in our study than there are


20 in the Fort Devens sample. That was purposeful.

21 We couldn't control how many women there

22 were in the Germany group, so we're stuck with 14


23 percent.

24 The next overhead will show you a few of

25 very preliminary results that we have from the study



124

1 so far. We have not begun to even summarize all of


2 the data from all of the 166 people that have gone

3 through project one, but we are starting to do so, and

4 we are starting to look at the data in a number of

5 ways. I'm just going to present you a couple of


6 overheads that will sort of summarize the findings so

7 far in terms of symptom rates.

8 The sample described on the left is the


9 CDC sample that was described from Pennsylvania in

10 MMWR by Reeves and Fakuda, and you can see the rates

11 of various symptoms in their group of veterans that

12 was deployed to their -- to the Gulf and their


13 comparison group. And on the right you can see the

14 same symptoms and prevalence rates of the symptoms for

15 our sample, the Gulf-deployed and the Germany-deployed


16 group. And you'll see that the symptom rates are

17 pretty similar in our Fort Devens sample that was

18 deployed to the Gulf that were in this Pennsylvania

19 sample.


20 This is somewhat interesting because the

21 Fort Devens sample were not chosen because they

22 thought they were sick or because they signed up for


23 the registry or anything else. They're just people we

24 sampled after they came back. So, they're not a self-

25 identified group. They're a group we chose.



125

1 The next overhead shows symptom rates in


2 the vets that were deployed to the Gulf and the vets

3 that were deployed to Germany, and you will see that

4 they're significantly higher rates of most of the

5 symptoms on this overhead among the people deployed to


6 -- it shouldn't say "Deployed Devens," it should say

7 "Deployed Germany," but it's the Devens group that was

8 deployed to the Gulf. They have more symptoms, higher


9 rates of symptoms.

10 We also have been looking at our data in

11 terms of what people say on the interview about what

12 their symptoms are, because interview data are used


13 for diagnosis of things like MCS and CF -- multiple

14 chemical sensitivity and chronic fatigue syndrome and

15 post traumatic stress disorder, and what they say on


16 questionnaires, and these are the rates of symptoms

17 that people report on interview when you just say what

18 symptoms do you have, and we're finding that there's

19 a big difference between what we find in interview


20 report, it's much lower than what we find when people

21 just check off symptoms on questionnaires. We're

22 trying to decide what to do about that.


23 We also have found, though, interestingly,

24 from the interview that people really know where they

25 were in the Gulf. We have the information from the



126

1 Army on where the units were, and we've asked people


2 where they were, and we find a very high degree of

3 subject reliability in reporting where they were in

4 the Gulf. So, they seem to be being reliable about

5 that.


6 That's project one, the psychological

7 studies.

8 CHAIRWOMAN LASHOF: Could we stop there


9 for a moment, and let you take up each project

10 separately, and ask if there aren't questions that the

11 Committee might have on the first project.

12 DR. TAYLOR: I'm curious. In


13 psychological testing, based on what you found in the

14 questionnaire, are you looking at the comparison or

15 the relationship of what they're reporting as their


16 symptoms to psychology or the ---

17 DR. WHITE: We're looking at several

18 relationships there. We're looking at the -- it's

19 very complicated. I once drew a diagram of it but I


20 didn't bother to bring it because you would have just

21 gotten cross-eyed looking at it. But the relationship

22 between symptoms and psychiatric diagnosis is looked


23 at. The relation between, quote, environmental

24 illness diagnosis and psychological symptoms is looked

25 at. The relationship between PTSD and



127

1 neuropsychological findings is looked at.


2 Everyone is diagnosed, if they have a

3 diagnosis.

4 We are also looking at stress as a

5 continuous variable, at fatigue as a continuous


6 variable, and chemical sensitivity as a continuous

7 variable, just -- rather than just a yes/no diagnosis.

8 And finally, probably -- well, there's a


9 few other things we're doing, looking at -- trying to

10 see if we can find symptom clusters that might relate

11 to some of these various things. And also we're

12 starting to look at -- we have no results at all yet,


13 but we're trying to look at self-reported exposures.

14 CHAIRWOMAN LASHOF: That was my next

15 question.


16 DR. WHITE: And where they were in the

17 Gulf in terms of their symptoms, their psychological

18 symptoms, their neuropsychological test findings and

19 PTSD.


20 So, we're trying to make an exposure

21 outcome relationship.

22 Dave's going to talk a little later about


23 what our various measures of exposure are, but we're

24 working on the self-reported part of it now in our 166

25 so far.



128

1 CHAIRWOMAN LASHOF: You feel fairly good


2 about the exposure information you're getting from the

3 veterans?

4 DR. WHITE: Well ---

5 CHAIRWOMAN LASHOF: Or do you?


6 DR. WHITE: --- what do you mean "fairly

7 good"?

8 CHAIRWOMAN LASHOF: Well, what I mean is


9 that it's -- are you able to correlate what they say

10 they're exposed to with where they say they are and

11 what data may be available to us, subjective data of

12 what went on where.


13 DR. WHITE: Okay. We're going to talk

14 about exposure more in a little bit, and there's an

15 overhead for it to give us just a structure to talk


16 about.

17 What we can say so far is that we are able

18 to corroborate where -- to a certain extent where they

19 say they were with the Army location data, and we're


20 hoping to put together the Army industrial hygiene

21 data and location data with other data that came from

22 the Gulf, so we're hoping to get some corroboration


23 about what people say about Gulf War fires.

24 Things like pyridostigmine exposure and

25 SCUD exposure and some of the other things we may or



129

1 may not be able to corroborate, so we're going to have


2 to look at them on two different levels.

3 And even where people were in the gulf,

4 the troop location data doesn't go all the way back to

5 December, and if a person was taken away from their


6 unit it might not be the most reliable estimate for

7 their unit. So, it's a complex problem,

8 unfortunately. We don't have any nice little


9 dosemeters that they wore to tell us. I guess we

10 wouldn't be here if they did.

11 CHAIRWOMAN LASHOF: In relation to --

12 well, it looks like you'll be getting into it in the


13 next one -- but from your project one where you have

14 identified symptomatology which clearly was much

15 greater among those deployed to the Gulf than those


16 deployed to Germany, were you also able to -- do you

17 have enough yet to say how many of those would

18 actually fit the criteria that have been accepted for

19 chronic fatigue syndrome and for multiple chemical


20 sensitivity so that you could or could not make a

21 diagnosis of either of those conditions?

22 DR. WHITE: Well, of about the hundred and


23 maybe twenty first people that we looked at, three --

24 two to three had filled the criteria for chronic

25 fatigue syndrome. There were a couple others that



130

1 were sort of borderline. And we had one or two that


2 filled the criteria for multiple chemical sensitivity.

3 And our rate of PTSD was less than ten percent. So,

4 those are our diagnoses so far.

5 CHAIRWOMAN LASHOF: That, then, reading


6 the charts at this point meant that there was a

7 prevalence, a higher prevalence of a lot of

8 symptomatology that don't fit into any of our


9 diagnostic categories yet.

10 DR. WHITE: Right. They don't fit the

11 criteria the way they're written. That's why we're

12 very interested in -- but a lot of people are really


13 tired, and, you know, fatigue on a continuous basis,

14 some measure of fatigue might be a very interesting

15 outcome or prediction variable. Same with stress.


16 PTSD is much lower but in our group -- it's somewhat

17 higher in our New Orleans group. We have some grave

18 registry people in the New Orleans group that have a

19 much higher PTSD rate. But for the Fort Devens group


20 it's quite low. Lower than expected, actually.

21 MAJOR KNOX: Have you found any

22 significant findings with women?


23 DR. WHITE: Well, it appears in all

24 populations that women report more symptoms than men,

25 and there are gender differences in different



131

1 psychiatric diagnoses, so I'm sure we'll see some of


2 that. But mainly what we've noticed so far is

3 somewhat more reporting of symptoms among women than

4 men, which consists of with the rest of the literature

5 on symptom reports and the two genders.


6 DR. TAYLOR: These are women who served in

7 the Gulf, or ---

8 DR. WHITE: Yes. Than men who served in


9 the Gulf. But if you asked women out there in the

10 world and men out there in the world, you sort of have

11 the same thing.

12 MAJOR KNOX: What do you think you could


13 have done differently to find out the same symptoms in

14 the interview versus the questionnaire?

15 DR. WHITE: I'm not sure.


16 MAJOR KNOX: You said that there were some

17 differences, people tended to check things more

18 frequently than when you asked them in an open-ended

19 question. How could you have done that differently?


20 DR. WHITE: Well, I mean, I don't think we

21 needed to do it differently. What we were trying to

22 get at the questionnaire -- in the interview is what's


23 the most salient thing, what do people just report,

24 and then on the questionnaire you have what they

25 report with prompting.



132

1 Then we also go over the questionnaire


2 with them and they still endorse it, but it's sort of

3 a more salient symptom kind of thing that we're

4 getting at with the interview. And also the -- we ask

5 the questions to see if they meet the criteria for any


6 of the diagnoses that we talked about.

7 CHAIRWOMAN LASHOF: The interview is done

8 before the questionnaire.


9 DR. WHITE: The interview is done after

10 the questionnaire, and it still turns out that way.

11 CHAIRWOMAN LASHOF: And it still turns out

12 that way. So, even with the prompting and having


13 filled out the questionnaire, then you ask them in the

14 interview and they pick certain specific ones that are

15 ---


16 DR. WHITE: Right.

17 Yes.

18 MS. JOELLENBECK: I wondered whether the

19 Fort Devens units, do they have -- were they deployed


20 in various places all over the Gulf, or do you find

21 that they tend to be grouped in general?

22 DR. WHITE: All over.


23 CHAIRWOMAN LASHOF: Okay. I guess we --

24 if we spend too much time on your first study we'll

25 never get through all your studies, so we'd better



133

1 move it along.


2 DR. WHITE: It's the study that's the

3 furthest done, so ---

4 CHAIRWOMAN LASHOF: Well, that's good,

5 then. That's fine. Okay.


6 DR. WHITE: Project two is our

7 neurological project, and this is an exploratory study

8 in which we are looking at diagnostic groups of people


9 who have illnesses thought to be environmentally

10 related, including multiple chemical sensitivity, post

11 traumatic stress disorder, and toxicant-induced

12 encephalopathy.


13 We're also looking at control groups of

14 Gulf War veterans who do not carry any of these

15 diagnoses and era veterans who were not deployed to


16 the Gulf.

17 Next overhead, please.

18 These studies are in the planning stages.

19 We're intending to look at spec studies, FMRI and the


20 neurological exam, a standard neurological exam is

21 being done on all of the veterans as part of project

22 four. These -- we're just planning these studies now.


23 We don't have very many Gulf War veterans, as you've

24 heard, in these diagnostic groups. The original study

25 plan, we were going to over -- we were also going to



134

1 select people with these diagnoses from non-veteran


2 groups, so, we may do some of those studies with non-

3 veteran groups.

4 And the other clinical methodological

5 study that we're doing, project six ---


6 CHAIRWOMAN LASHOF: Let me stop you and

7 just see if there are a couple of questions. Granted

8 that it's just being planned at this point.


9 How many do you hope -- what's your goal

10 of the number you would hope to get in multiple --

11 with each of the diagnoses, multiple chemical

12 sensitivity ---


13 DR. WHITE: We're hoping to get at least

14 twenty with each of the diagnoses.

15 CHAIRWOMAN LASHOF: And target time frame


16 for ---

17 DR. WHITE: For finishing the neurologic

18 studies?

19 CHAIRWOMAN LASHOF: Yes.


20 DR. WHITE: We hope to have the protocols

21 all in place -- because of the center being funded,

22 our VA -- or somewhat related, at least, to the center


23 being funded -- our VA went ahead and is upgrading its

24 MRI to functional MRI, so we're getting ready to start

25 piloting hopefully this summer. We hope by summer to



135

1 have all our final protocols in place and to have run


2 a few pilots, and then this study will probably take

3 three years to get enough people and get it all going,

4 sort of.

5 We're concentrating really on projects one


6 and four, the psychological and immune function, and

7 pulmonary studies for the first two years, and then

8 hopefully at that point we'll have enough subjects to


9 do some of our more specific diagnostic studies.

10 CHAIRWOMAN LASHOF: How broad a sample are

11 you able to draw from to try to get the number of

12 people?


13 DR. WHITE: The twenty?

14 CHAIRWOMAN LASHOF: Yes.

15 DR. WHITE: Well, we're taking them from


16 the Fort Devens sample. We were also -- one reason

17 that we applied for the DOD funding to look at people

18 with clinical -- who came in complaining that they

19 were sick, was that we were hoping -- first of all, we


20 want to see how they're different from the Fort Devens

21 group, are they more extreme, are their symptoms

22 different, are their clusters different. But also we


23 were hoping that there might be more diagnosable

24 veterans in the clinical sample.

25 And that study is -- we're setting up the



136

1 contract now with DOD. That study should start this


2 summer. So hopefully that will help us. And those

3 will also be New England-area veterans.

4 CHAIRWOMAN LASHOF: Would it make sense or

5 would it just not be good scientific protocol for you


6 to try to recruit veterans who've identified

7 themselves as having this disease from further centers

8 around the country?


9 DR. WHITE: Well, we may have to do that -

10 --

11 CHAIRWOMAN LASHOF: If you had enough

12 money.


13 DR. WHITE: We might want to do that if we

14 had enough money. We also have in our clinic in

15 Boston five hundred people who have seen the registry


16 physician and who carry diagnosis -- some of these

17 diagnoses that we can tap into.

18 There's also a group of five hundred

19 veterans who have sought care at the Manchester VA.


20 We're working with Victor Gordon there. And he has

21 identified some people that he thinks may have these

22 diagnoses, and so we will be able to sample from those


23 groups also.

24 So, hopefully that will get us up to

25 twenty.



137

1 CHAIRWOMAN LASHOF: Okay.


2 DR. WHITE: And we have New Jersey that

3 we're cooperating with.

4 CHAIRWOMAN LASHOF: Okay. Go on. Any

5 other questions on this one?


6 DR. WHITE: The last study that I'm going

7 to describe is a basic methodology study.

8 We are using a set of computer-assisted


9 neuropsychological tests that have been developed for

10 studying people exposed to neurotoxicants to measure

11 the behavioral effects of exposure.

12 I have been involved in a long line of


13 research on this in which we have taken the tests and

14 attempted to subject them to the gold standard as

15 measures of central nervous system function, which is


16 that they show deficits in patients who have known

17 brain damage and known specific types of brain damage.

18 So, what we're doing in this study is

19 looking at neurological patients with specific


20 neurological diagnoses. We're also looking at the

21 MCS, CFS and PTSD patients in order to see if there

22 are any of these computer-assisted tests that will


23 help us in diagnosing central nervous system or

24 cognitive dysfunction associated with any of these

25 diagnoses.



138

1 These tests are much easier to give


2 because they're computer-assisted. They're not

3 computerized. We don't put the subject in front of

4 them or the patient in front of them and say "do this

5 by yourself." But the test stimuli and responses are


6 measured by the computer. So, that's project six.

7 CHAIRWOMAN LASHOF: Time table for project

8 six? Number of people?


9 DR. WHITE: We are starting to pilot that

10 study now. We changed some of the tests because our

11 prior validation studies showed that some of the tests

12 didn't work the way they were expected to work so we


13 developed some new tests, and we expanded the

14 flexibility of the testing system so people could be

15 tested auditorially in tactile. We now have all the


16 tests in place.

17 The person who -- Dr. Letz who helped us

18 with the revision of the battery is going to be in

19 town next week and will have all the new stuff on our


20 computer and will be able to up and go with some

21 pilots.

22 We're going to be using some undiagnosed


23 Gulf War veterans as our pilots to make sure our

24 system works the way we want it to, and then we'll

25 start the validation study.



139

1 It has a lot of subject groups so it'll


2 probably take the rest of the five years to get them

3 all into the study.

4 DR. TAYLOR: How are you identify the

5 neurotoxicants? What is that exactly?


6 DR. WHITE: For neurotoxicant induced

7 encephalopathy, we are -- Dr. Proctor actually has a

8 career award to look at this particular group, and


9 this particular group for this study, for project six,

10 is a group of people who have a well-defined and

11 described exposure to a neurotoxicant like lead or

12 carbon monoxide or mixed solvents or perchlorethylene,


13 something like that, mercury, we have a number, and

14 who have been shown by clinical workup with an

15 environmental health physician, a neurologist and a


16 neuropsychologist, to have secondary brain damage, and

17 those will be the -- that will be the subject group

18 for the validation of this battery on the

19 neurotoxicants.


20 CHAIRWOMAN LASHOF: Any other questions on

21 that? Okay.

22 DR. WHITE: Dr. Ozonoff's going to talk


23 about exposure assessment and some of the other

24 projects.

25 DR. OZONOFF: You've heard about projects



140

1 one, two and six. You'll now hear about projects


2 three, four and five, not in that order, but starting

3 with project four.

4 The fulcrum of much of this research is in

5 exposure assessment. One of my colleagues who I


6 suspect was once a real estate agent says that the

7 three most important principles of environmental

8 epidemiology are exposure assessment, exposure


9 assessment and exposure assessment; perhaps an

10 overstatement, but certainly it's a critical piece of

11 the entire picture. And unfortunately it's one of the

12 fuzzier pieces, the one -- one of the pieces with the


13 most indistinct edges, the one that's most difficult

14 to fit into the rest of the puzzle because we don't

15 know its shape that well.


16 Here are the sources of data that we have

17 for the exposure assessment. The first two are self-

18 report information on Gulf locations and dates and

19 theater from the structured environmental interview


20 that the sample is undergoing at time three.

21 At the same we asked them about various

22 exposures that they took, for example, did they take


23 pyridostigmine, did they use insect repellent, or were

24 they involved in SCUD missile attacks, what was their

25 experience with the oil well fires and so forth.



141

1 There are, I suppose, several schools of


2 thought on the reliability of self-report information.

3 I guess the first thing I would say is that self-

4 report information is the backbone of clinical

5 medicine. I mean, that's what patients come in and


6 tell doctors what their chief complaints are and it's

7 served well for clinical practice throughout these

8 many years.


9 Secondly, we adopt the position that -- of

10 trust with the people who come to us. We believe what

11 they say. And I think our experience in all the

12 validations that we've done is that that trust is well


13 placed.

14 Thirdly, it's -- perhaps it's the only

15 source of information on most of this. So, under the


16 assumption that some information is better than no

17 information, with the added caution that we believe

18 the information is not wrong deliberately or

19 accidentally, we feel that this is valuable sources of


20 information.

21 As Dr. White said, that insofar as we can

22 validate some of this, for example, self-reporting


23 information on locations and dates and theater, we

24 have information from the Defense Manpower Data Center

25 on dates in and out of theater. We have some



142

1 information on troop location for the units that are


2 involved in the Fort Devens sample. And insofar as

3 we're able to check information from categories one

4 and two with information documentation from categories

5 three and four, we find it to be reliable information,


6 which is reassuring.

7 Our research work also is focusing on one

8 of the aspects of exposure. There are so many kinds


9 of exposures that occurred to veterans in the Gulf

10 that I suppose, you know, when I first looked at it,

11 the question was not why are some of the veterans

12 sick, but why aren't they all sick.


13 On the other hand, in order to do

14 efficient research work you really have to focus on

15 some things, and that means not looking at other


16 things.

17 We have elected to look at the oil well

18 fires. We understand that there are some differences

19 of opinion as to the importance, the long-term


20 importance of the oil well fires for the overall

21 health effects that have occurred in this population.

22 We have several reasons for believing the


23 oil well fires are important to look at. One of them

24 is if you look at the very scanty but existing

25 industrial hygiene data for particulates in this area,



143

1 they're very high, and they persisted for reasonably


2 long periods of time.

3 If you compare them with other levels that

4 are known to produce acute health effects, for

5 example, the London fog levels or the Donora -- what


6 was assumed in Donora, Pennsylvania, in 1948, they are

7 comparable, same order of magnitude. So, instead of

8 a thousand micrograms per cubic meter, it's maybe four


9 or five hundred micrograms per cubic meter, but it

10 went on for a much longer period of time.

11 The materials involved, the products of

12 combustion are biologically active, not only as


13 mutagens or carcinogens, not only as respiratory

14 irritants, but as also they affect many other systems,

15 they punch a button in the cell called the AH receptor


16 which you'll hear a little bit more about in a moment,

17 which can have manifold effects on the body. So, for

18 that reason, we thought it was important.

19 And lastly we believe it's important


20 because it's a matter of considerable concern to the

21 veterans that we've talked to. This is one of the

22 exposures that they bring up time and again as


23 something that they are concerned about, and if for no

24 other reason than that, it's important to look at it.

25 And as I say, for the first several reasons why we're



144

1 looking at it, we think that it makes sense, it's a


2 plausible place to look for problems.

3 So, along with the first four areas of

4 information here, we are hoping at some point in the

5 future to get the result of an air-modeling effort


6 being done by the U. S. Army Environmental Hygiene

7 Agency team. This is a meso scale regional modeling

8 of the particulate exposures from the oil well fires.


9 Because of it, it's a meso scale modeling effort, that

10 means it's being done on a fairly coarse grid of

11 fifteen kilometers by fifteen kilometers.

12 The idea will be to put together the unit


13 location information with this fifteen-kilometer-by-

14 fifteen-kilometer grid and by tracking units in their

15 locations throughout the time period of exposure, be


16 able to cumulate, to get a cumulative measure of

17 exposure to the oil well fires through this air

18 modeling exposure data.

19 Now, we're very -- we've used, actually,


20 air modeling data, usually industrial source complex

21 models for our studies in the past, and we're fairly

22 well aware of the limitations of this kind of air


23 modeling data for exposure assessment. It is not our

24 claim that we can predict with any high degree of

25 accuracy exactly how much particulates individuals



145

1 were exposed to as a result of a model like this,


2 especially one on such a coarse scale.

3 On the other hand, we think that it's

4 probably a fairly good relative measure of exposure.

5 It takes into account meteorological conditions; it


6 takes in -- there's a source term involved; and,

7 therefore, we think that it makes sense to use that.

8 The other kinds of measures that would


9 typically be used, for example, the amount of time in

10 theater, as a measure of the exposures during the oil

11 well fires, that would be a very good and a normally

12 used cumulative measure of exposure. This is even


13 better because it, in fact, incorporates that term,

14 plus the meteorological conditions and a source term

15 for the modeling as well.


16 However, we are going to look at other

17 measures of exposure, other metrics of exposure as

18 well.

19 Next slide, please.


20 Here is project four. This -- these are

21 detailed clinical examinations that are being done on

22 the Fort Devens sample. Fort Devens sample, as you


23 may recall, started out with 3,000. They're now being

24 brought a few hundred a year. And those individuals

25 are being looked at very intensively with a very



146

1 intensive neuropsych battery that Dr. White has just


2 described to you, but at the same time they're being

3 looked at with clinical studies.

4 The set of hypotheses for project four

5 essentially say that if you were exposed to a lot of


6 smoke from the oil well fires there's going to be some

7 effect on your pulmonary function. That effect on

8 pulmonary function might be at the level of the


9 symptoms that you report. It might be at the level of

10 a standard pulmonary function test. Or it might at

11 the level of a greater irritability of your bronchial

12 tree. So, we're testing that third possibility with


13 pulmonary function testing with methacholine

14 challenge.

15 One of our consultants, George O'Connor,


16 is the deviser of a particularly sensitive way to do

17 methacholine challenges and we're using that protocol.

18 Next slide, please.

19 In order to carry out the study which is


20 now underway, we need to assign exposures. That is

21 being done separately with the evaluation of the

22 health outcomes so that essentially both exposure


23 assessment and the health outcomes are being done

24 blinded. And, in fact, we're still waiting for the

25 industrial hygiene data nad the modeling data.



147

1 Then we need to assess outcomes and risk


2 factor variables. That's being done on the basis of

3 a physical exam and pulmonary function testing, and

4 then test the relationship with that. And at the same

5 time establish a roster of veterans with well


6 documented respiratory status.

7 This is important, we feel, because it may

8 be that down the line there will be differences in


9 groups with slightly different pulmonary and

10 respiratory status. At the moment the model for that

11 is the Donora, Pennsylvania, air pollution episode of

12 1948 where people who came in sick in 1948 were seen


13 in the emergency room, were followed up seven to eight

14 years later and increased rates of morbidity and some

15 increased mortality was found in the people with the


16 acute symptoms who later appeared to recover but down

17 the line didn't fare as well as the people who didn't

18 come in.

19 Next, please.


20 And here's the protocol for this project.

21 There is a pulmonary history questionnaire adapted

22 from the American Thoracic Society and the


23 International Union Against Tuberculosis. There is a

24 physical exam which concentrates on cardiopulmonary

25 function and also a detailed neurological exam. The



148

1 detailed neurological exam, of course, feeds back into


2 projects one and two insofar as if there are any frank

3 neurological deficits or neurological disease it's

4 important for the interpretation of the neuropsych

5 testing as well.


6 There is a standard set of blood tests, a

7 CBC, the blood chemistry, which is a smack twelve

8 which is the same thing that's being used in the


9 registry.

10 We are also looking at IGE's because of

11 the relationship with asthma. These are

12 immunoglobulins. And then we are doing some flow


13 cytometry to look at some immunologic status.

14 The pulmonary function tests are standard

15 pulmonary function tests being done under NIOSH


16 protocols under NIOSH-protocol-trained technicians,

17 and then in the next year we will begin methacholine

18 challenges.

19 Methacholine is a substance that you


20 expose through inhalation to the subject and if they

21 have hyperactive airways, so-called reactive airway

22 disease, you can pick it up with graded exposures to


23 methacholine.

24 And then there's a follow-up health

25 symptom interview associated with that.



149

1 And the next slide.


2 Here's what's transpired to date as of,

3 say, a week ago. Thirty-six subjects have completed

4 the respiratory questionnaire. Twenty-six of them

5 have had pulmonary function testing. Twenty-three


6 have had physical exam. And twenty-two have had blood

7 drawn. Some of those bloods have also been sent to

8 project five which I'm going to describe in a minute.


9 I think that's the rundown on project

10 four. Let's see the next slide and if it's -- yes,

11 okay, project three. So I'll pause here for a moment

12 if you have any questions about this effort.


13 DR. TAYLOR: Can you go back to the

14 previous slide that showed the sample size? This is

15 what you have thus far in that sample group is thirty-


16 six subjects?

17 DR. OZONOFF: This is what's been run

18 through the sample so far. The size of the study

19 population is the same as project one, it's the Fort


20 Devens population that's coming back. Besides getting

21 the test that Dr. White described, they're also

22 getting these.


23 DR. WHITE: What happened is this was a

24 year delayed from the other stuff, so we had already

25 done a lot of people on the psychological studies



150

1 while we were buying the PFT machines and getting


2 people trained and so on. Now we're -- now when

3 somebody comes in for project one they get everything,

4 but we're calling all the people that had the psych

5 studies back in for this project. For the people that


6 were seen before, we had all this methodology in

7 place.

8 DR. TAYLOR: I had one other question.


9 You mentioned that you -- can you explain

10 again specifically about how you're going to look at

11 exposures to Gulf War fires. Are you using actual

12 reports from the environmental group of sampling that


13 was collected during the Gulf War, or this is going to

14 be a group where you're testing ---

15 DR. OZONOFF: Well, there are several


16 sources of information. One of them is, you know,

17 what the subject tells us about their exposure.

18 That's a piece of information. We'll have to look to

19 see what kinds -- what the nature of those reports are


20 to figure out how to code it properly.

21 But certainly if somebody says they were

22 in the midst of a cloud of black smoke, their uniforms


23 were soaked with oil day after day, this is a piece of

24 information that clearly would be relevant.

25 Second piece of information might be some



151

1 gross measure of exposure, for example, how long they


2 were in country during the fires.

3 Third piece of information would be using

4 modeling efforts. Now, those modeling efforts do not

5 explicitly take into account the industrial hygiene


6 measurements that were done. There weren't very many

7 measurements done. There were a handful of locations,

8 six or eight or so where measurements were done.


9 There actually is some additional industrial hygiene

10 information available from the Saudis which we are

11 trying to obtain now. But in terms of the Army

12 measurements, there are not very many measurements.


13 So, in the absence of many measurements,

14 and those only snapshots at certain points in time,

15 the alternative is to try and figure out on the basis


16 of the volume of material that was burned and the

17 meteorological conditions at the time which are

18 available, exactly where that stuff would have gone

19 and how long it would have stayed along and what the


20 concentrations would have been at various places.

21 So, that uses a source term which is how

22 much stuff is coming up, and it uses meteorological


23 conditions, wind direction, mixing heights, and amount

24 of cloud cover and so forth, and insulation, that is,

25 the amount of sunlight that comes down. And it, on



152

1 the basis of a physical model, makes a prediction as


2 to what the levels would have been in a square fifteen

3 kilometers by fifteen kilometers. And if you know

4 where the unit was at any particular time, you can

5 assign them to a square and then cumulate over time


6 the amount of exposure they would have gotten

7 according to that model.

8 It's probably -- in fact, it almost


9 certainly in our view does not predict how much they

10 were really exposed to, but what it does is it

11 provides a relative exposure from one unit to the

12 next.


13 CHAIRWOMAN LASHOF: Who's doing the

14 modeling?

15 DR. OZONOFF: The -- I forget the title.


16 U. S. Army Environmental Hygiene Agency Team which is

17 in ---

18 MS. JOELLENBECK: Aberdeen.

19 DR. OZONOFF: Aberdeen.


20 MS. JOELLENBECK: Their name is now the U.

21 S. Army Center for Health Promotion and Prevention,

22 Preventive Medicine.


23 CHAIRWOMAN LASHOF: And the time frame for

24 completing project four?

25 DR. OZONOFF: It's concurrent with project



153

1 one, so it's going to proceed at the pace of a hundred


2 and twenty, I think, a year, for the next two or three

3 years.

4 DR. WHITE: We hope to have two hundred

5 and fifty people through project one by the end of the


6 summer, and it will take a bit longer to get everybody

7 back for the -- so that they've had the full protocol,

8 but we hope sometime by the middle of the next year


9 we'll have two hundred and fifty people with both

10 projects, one and four.

11 CHAIRWOMAN LASHOF: What's the limiting

12 factor on speeding things up?


13 DR. WHITE: Well, we have to randomly

14 sample our larger sample. We chose two hundred people

15 for our first group. We've now called up another


16 hundred-and-fifty names. And it's basically getting

17 people to come in and getting it set up. We -- you

18 can only go so fast through those names, get people

19 set up for so long.


20 How many people do we have scheduled now?

21 We probably have about two hundred and

22 five scheduled now. But they have to take off work,


23 you know, you have to bring them in, they have to ---

24 CHAIRWOMAN LASHOF: What I was trying to

25 get at is whether the limiting factor is that sort of



154

1 thing, trying to get them and how fast they can come


2 in, or how much manpower you have at the center to

3 actually handle how many you can handle a day and what

4 it will take it do it faster.

5 DR. WHITE: Well, I mean, there's some of


6 that, but the other thing we've done is we've gone to

7 them, so if we have a group of people in Rhode Island

8 or a group of people in New Hampshire, we've gone and


9 scheduled some weekends where we've gone to them, and

10 then we've been able to do a whole bunch of people at

11 once. So, when we can do that, we do that.

12 And I think if we weren't doing that our


13 numbers would be much lower.

14 CHAIRWOMAN LASHOF: Okay. Thanks.

15 MS. BRIX: Are you going to be testing all


16 the people who are in project one also in project

17 four? And another question is, do you have medical

18 exclusion criteria such as previous history of head

19 trauma before a person went to the Persian Gulf or


20 something like that that would -- where you would

21 decide not to include them in the study?

22 DR. WHITE: Everyone in -- well, we're


23 going to try to get everyone who was in project one to

24 do project four. Obviously there'll be some people

25 that we won't be able to get back for various reasons.



155

1 But our goal is to get as many as we can of the people


2 who've done the psychology project to do the project

3 four, and everybody who comes in now has both at the

4 same time.

5 We don't exactly have exclusion criteria.


6 What we're doing is we're keeping track of people's

7 medical history, neurological history, physical

8 history, problems they had before, substance abuse,


9 alcohol abuse. We have a very extensive protocol that

10 looks at historical factors, and we will note them and

11 consider them when we need to when we're looking at

12 different problems within our data set.


13 DR. CAPLAN: I know you've got a lot of

14 variables to measure and you've explained how you

15 picked out the oil fire exposures, but are you going


16 to be able with these sample sizes to look for

17 synergistic effects between other things that people

18 might have been exposed to, or -- whether it's the

19 delousing or certain microbes and so forth? Is that


20 possible?

21 DR. OZONOFF: Well, I think it's difficult

22 to say at the moment. Of course, once you have more


23 than one independent variable involved, the cells

24 start to get small, and it's going to depend on what

25 the numbers are. So, I think the answer at the moment



156

1 is not clear, although other kinds of variables can be


2 looked at separately.

3 When you start looking at variables in

4 combination and interactions, then you begin to have

5 statistical power problems.


6 DR. WHITE: One of our plans is to look at

7 -- we are looking at reports about insecticide use and

8 reports about pyridostigmine and SCUDS and depleted


9 uranium, anything, and when we have a big enough end

10 we're starting to design some studies where we're

11 looking at these separate exposures and outcome. If

12 we get some hypotheses from what we see there, or some


13 hypotheses about some interactions and we think we

14 need more people, then we'll try to sample so that we

15 can look at those questions.


16 I mean, our original plan had been to do

17 a big thing for five years with these people and do

18 five hundred people, but what our plan now is to do

19 these first two hundred and fifty in the first two-


20 and-a-half years or so and then see if we can look at

21 some more specific questions with our data later on,

22 so that, you know, maybe we can get at mechanisms or


23 interactions or whatever. But we feel that we may

24 have to be flexible about our methodology as we see

25 what we see in our data.



157

1 DR. CAPLAN: One other question. What


2 sort of feedback are you giving to the subjects about

3 your findings? When will they find out?

4 DR. OZONOFF: For example, if there's any

5 clinical information, that's referred to the clinical


6 side of the VA, and ---

7 DR. WHITE: With the subject's permission.

8 DR. OZONOFF: Yes.


9 With respect to the research, we're

10 telling them that this is research information and,

11 therefore, not necessarily of value ---

12 CHAIRWOMAN LASHOF: To them.


13 Any other questions on this one?

14 Okay. Go ahead to the next.

15 DR. OZONOFF: Next slide, please.


16 Project three is really an outgrowth of

17 the -- it's a combination of an update of the

18 previous Agent Orange study and a new study involving

19 the Persian Gulf veterans.


20 Just to put the Persian Gulf portion of it

21 in perspective, let me just briefly describe the

22 Vietnam study.


23 In Massachusetts veterans who served in

24 Vietnam were offered a bonus of $300 and Vietnam-era

25 veterans were offered a bonus of $200. It was



158

1 automatic. You just show them your discharge and if


2 it says you were in Vietnam you got three hundred;

3 otherwise you got two hundred if you were a veteran in

4 the Vietnam era.

5 A tape of people who receive those bonuses


6 is kept in the Secretary of State's office here in

7 Massachusetts, and Dr. Clapp who was conducting the

8 study a number of years ago decided to link that


9 information with the Cancer Registry in Massachusetts,

10 and he has done several studies, a mortality study and

11 a standardized morbidity odds ratio study showing

12 increased risk of soft tissue sarcoma in that group.


13 He has always wished to update that study

14 with a further passage of years to see whether

15 additional cancers -- he's particularly interested in


16 thyroid cancer -- would show up.

17 This is primarily a central cancer

18 veteran-type linkage study. When this project here

19 came along, we decided that we wouldn't wait for the


20 complaints of cancer which we assume will probably

21 materialize some years down the line, but set up a

22 roster right away that we can then keep track of as


23 the years pass. And, so, we are linking the veterans'

24 tapes of New England veterans with all the central

25 cancer registries in the New England area, and as a



159

1 result of the federal legislation that was passed a


2 year or two ago under the sponsorship of Congressman

3 Sanders, all states now have to have central cancer

4 registries.

5 And, so, we are setting up that linkage.


6 It's a relatively inexpensive project. It's

7 preparation for the future since the latency period is

8 not sufficient if there were any carcinogens involved


9 here for cancers to show up.

10 On the other hand, we thought that it's

11 best to have a system like this set up, and that's the

12 purpose of project three. There are no results to


13 report to you, but I'd be glad to answer any questions

14 about it.

15 MAJOR KNOX: Are you going to look back at


16 the previous years since the Gulf just to look at the

17 number of cancers that have already occurred?

18 DR. OZONOFF: Yes. We will be surveilling

19 the cancer results year by year, and we're setting it


20 up now -- we're setting up the linkage now, and that

21 linkage will also be good for the years prior to this

22 if there was an extant cancer registry in the state.


23 Vermont, for example, has just set one up. On the

24 other hand, Massachusetts has had one since 1982 and

25 so we can look at all cancers that have appeared from



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1 '91/'92 on.


2 CHAIRWOMAN LASHOF: Any other questions?

3 Okay. Go ahead.

4 DR. OZONOFF: And finally project five.

5 Oil well fires produce products at combustion, many


6 products at combustion. What they have in common is

7 that they appear to work their biological effects

8 through a button they push on the cell called the


9 aromatic hydrocarbon receptor, or the AH receptor,

10 sometimes called the dioxin receptor because it's the

11 same button that dioxin pushes and PCBs and many other

12 things.


13 So, although this project is specifically

14 aimed at Persian Gulf exposures, in fact it produces

15 information that's useful to the Agent Orange question


16 and to all veterans who might be involved, say, with

17 exposure to diesel exhaust or other products of

18 combustion.

19 The hypothesis in the field is that the


20 level of the AH receptor and perhaps the quality of

21 the AH receptor is important in how these biological

22 effects work, but that's never been confirmed, and so


23 a basic part of the study is to confirm that the AH

24 receptor is the essential button that gets pushed.

25 The harder you push the button, the bigger the effect



161

1 that you get, or the bigger the button is, or how well


2 the button works. And this is being done by producing

3 transgenic mice, both knockout mice and mice with

4 elevated levels of AH receptor.

5 So, it's a basic science study with direct


6 and very pertinent application to the Persian Gulf

7 problem.

8 The original proposal described also


9 another series of animal studies which would develop

10 the methods whereby the level of AH receptor in

11 veterans could be measured and then followed by a

12 phase in which this would be measured in veterans.


13 We've had a great deal of success in this

14 particular research project and we have now skipped

15 over the animal portion and the assay for single-


16 stranded confirmation polymorphism analysis has been

17 perfected and is being used currently in seventeen or

18 eighteen bloods from the Persian Gulf veterans

19 obtained in project one have now been run through that


20 assay, so we are now able to make quantitative

21 measures of the amount of AH receptor in veterans, and

22 we hope with the passage of not much more time we will


23 also be able to look at the quality of those AH

24 receptors, that is, to see whether there is a genetic

25 polymorphism involved.



162

1 The basic question here really is if you


2 have two people in the same unit exposed to an oil

3 well fire and one of them feels rotten and the other

4 one doesn't, what's the difference between the two of

5 them.


6 If these biologically active compounds

7 present in abundance in this environment work by

8 pushing this button, then the difference might be that


9 one of them has a bigger -- one of the individuals has

10 a bigger button, or no button at all, or more buttons

11 on their cells, or they may have buttons that don't

12 work as well, so you push them and they don't send as


13 big a signal.

14 That's what this research is trying to get

15 at is why are there differences between the way people


16 react to polycyclic aromatic hydrocarbons, which are

17 the compounds present in the oil well fires.

18 I'll leave it at that and be glad to

19 answer any questions about this particular project as


20 well.

21 DR. TAYLOR: You said there are eighteen

22 individuals?


23 DR. OZONOFF: Eighteen bloods have been

24 sent over for SSCP analysis, but we will eventually

25 run all of the bloods through them. What's just



163

1 happened is that the assay has been perfected so that


2 it can be used on human blood to quantitate the amount

3 of AH receptor.

4 The transgenic mice are in various stages

5 of production. Chimeric mice have been produced and


6 they're being bred with each other and we're looking

7 to see whether the knockout gene will go germ-wide or

8 not so that we can produce homozygous recombinants.


9 CHAIRWOMAN LASHOF: What's the data that

10 we now have that there are genetic differences in

11 humans on ---

12 DR. OZONOFF: There is not very much, if


13 any, information about human polymorphisms for the AH

14 receptor, but polymorphisms in mice are very well

15 described and known, both in quantity and in quality.


16 There are dioxin-resistant mice and dioxin-sensitive

17 mice. And this is primarily due not only to the

18 amount of AH receptor in their cells, but to the level

19 of binding of the AH receptor in the polymorphic


20 varieties.

21 And there's very I would say sound reason

22 to believe that there are similar polymorphisms in


23 humans, although nobody has looked at it, and this

24 assay will be one of the first to really -- to look at

25 human populations for this kind of polymorphism.



164

1 CHAIRWOMAN LASHOF: So, obviously then, we


2 have no idea what the distribution might be ---

3 DR. OZONOFF: That's correct.

4 CHAIRWOMAN LASHOF: --- at this point.

5 Okay. Are there other questions?


6 We're right on time. Thank you very much.

7 That was really very helpful and very fascinating

8 work, and I wish you the best and wish you could do it


9 all in about half that time.

10 DR. WHITE: So do we.

11 (Whereupon, a lunch recess was taken.)

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165

1 AFTERNOON SESSION


2 CHAIRWOMAN LASHOF: The rest of the

3 Committee should be joining us momentarily, but I

4 don't want to delay anyone else. So, this afternoon

5 the first session will be on the environmental hazards


6 research work of the Veteran Affairs Medical Center at

7 East Orange. Dr. Ottenweller and Dr. Natelson will

8 present.


9 Welcome, Dr. Ottenweller and Dr. Natelson.

10 It's a pleasure to have you here. Whoever is to go

11 first -- if you'd both just introduce yourselves, a

12 little bit about your background, and then whoever


13 wants to kick it off.

14 DR. OTTENWELLER: My name is John

15 Ottenweller and I'm a Professor of Neuroscience at the


16 New Jersey Medical School, and I'm the Research

17 Director for the Environmental Hazards Center in New

18 Jersey with a long time research interest and training

19 in neuroendocrinology and chronic stress.


20 DR. NATELSON: And I'm Benjamin Natelson.

21 I am a neurologist at the VA Medical Center and

22 Professor of Neurosciences at our sister medical


23 school, the New Jersey Medical School, and I've had

24 merit review funding from the VA since 1974 to look at

25 my interests in experimental behavioral medicine, the



166

1 effects of stress on the outcome of disease in


2 animals. And I'm the Medical Director of our center.

3 And I'm also the Director of an NIH-funded center at

4 the medical school to study chronic fatigue syndrome.

5 CHAIRWOMAN LASHOF: Very good. Thank you


6 very much for joining us today. And who would like to

7 begin?

8 DR. NATELSON: Let me, please. Let me


9 give you a little overview of how we've organized

10 things at New Jersey. We basically have a set of

11 clinical and basic science studies. The clinical

12 studies consist of an epidemiological survey to


13 identify risk factors for veterans complaining of

14 problems after the Gulf, and also to provide subjects

15 for our research studies.


16 As you can see, our clinical studies are

17 focused on chronic fatigue, and that's because we are

18 going to use the knowledge that we've gleaned in our

19 civilian population, the patients with chronic fatigue


20 syndrome, based on our NIH-funded studies, to look to

21 see whether the answers are the same for the veteran

22 with chronic fatigue.


23 And we're also studying chemical

24 sensitivity because our colleagues at EOHSI, the

25 Environmental and Occupational Health Sciences



167

1 Institute at our sister medical school, have NIH


2 funding to look at chemical sensitivity.

3 And then the last piece is the behavioral

4 studies on genetic stress and responsiveness to

5 pyridostigmine.


6 Now, the thing that captured our attention

7 early on concerning the veteran who returned from the

8 gulf was the fact that the most common complaints of


9 four Persian Gulf veterans with unexplained illnesses

10 were complaints that patients with chronic fatigue

11 syndrome and multiple chemical sensitivity have;

12 specifically, fever, headache, muscle and joint pain,


13 loss of memory and sleep disturbances. The ones we

14 bolded are part of the case definition of chronic

15 fatigue syndrome and although there is not a case


16 definition for multiple chemical sensitivity, are

17 complaints that these patients have.

18 So, we thought that the veteran may also

19 have had CFS or MCS, and so to look at that question,


20 what we did was take our questionnaire that we used to

21 identify patients in the community with chronic

22 fatigue syndrome and mailed that questionnaire to over


23 two hundred and thirty veterans on the registry,

24 randomly selected, and another two hundred and about

25 ten veterans who complained of fatigue as one of their



168

1 three major complaints.


2 And what we did was we went through --

3 these questionnaires essentially have been built to

4 identify on paper patients that look like they have

5 CFS or MCS to come into our respective centers for a


6 careful history and physical and rule out bloods to

7 corroborate the illness, and then in our CFS center to

8 participate in our NIH-funded research.


9 So let me just go through the case

10 definitions of CFS.

11 CFS has now two case definitions. This

12 was the original one published in the Annals in 1988,


13 and basically what we do on our questionnaire is we

14 are sure the patient has a fatigue illness. We ask

15 the patient whether that illness has produced greater


16 than a fifty-percent reduction of activity. And what

17 chronic fatigue syndrome is, is it is fatigue plus.

18 Plus a series of neuropsychiatric infectious

19 rheumatological complaints. And here you can see the


20 ten minor symptoms which the case definition requires

21 be present for at least six months, and we've asked

22 the veteran to endorse seven of them.


23 Now, on our questionnaire we also get a

24 chance to do some screening for exclusions because

25 obviously fatigue is an incredibly common complaint in



169

1 many medical illnesses, and we have to rule out other


2 causes of fatigue. So, we ask whether the veteran had

3 other medical problems, for instance, unresolved

4 hepatitis.

5 One of the rule-outs for CFS is the


6 presence of psychotic or delusional disorder. Severe

7 depression in the melancholic or manic-depressive

8 range, but not simple depression, not major


9 depression, that's not an exclusion.The presence of

10 dementia and then the presence of an eating disorder.

11 So, if a veteran had indicated that he or

12 she had one of those exclusions, then we would assume


13 even though he or she endorsed fatigue that there was

14 a medical cause for it.

15 Well, a year ago in December a number of


16 us got together in the CDC because of concern that

17 perhaps that definition was a bit too rigid, and so

18 the idea was to open up, to get a bigger denominator

19 of patients with severe fatiguing illness and be a


20 little bit less restrictive. And so there were a

21 couple of changes made in this '94 publication in the

22 Annals.


23 Again, the individual -- and here again,

24 the veteran -- had to be sick with a fatiguing

25 illness. Instead of asking for a percent decrease in



170

1 activity we're now looking for substantial reductions


2 in activity in one of these four aspects of life, and

3 then the number of minor symptoms was reduced. They

4 dropped fever and chills because fever was rarely

5 documented by the patient, and weakness. And so,


6 again, the minor symptoms consist of symptoms in the

7 neuropsychiatric, infection, and rheumatological

8 domains, and now only four of those minors needed to


9 be endorsed. And again, the same exclusions.

10 Now, we also screened for patients who

11 might have multiple chemical sensitivity, and on our

12 questionnaire we asked the veteran are you unusually


13 sensitive to chemicals, and if the veteran said yes,

14 we then asked him or her to tell us whether they had

15 had to change their life because of that chemical


16 sensitivity. Did they have to take a special diet?

17 This is the so-called Cullen criteria. Special

18 precautions in home furnishings. Special precautions

19 in clothing. Trouble shopping or eating out.


20 So, if they endorsed two out of four of

21 these and said yes, that they were sensitive to

22 chemicals, then we would say that they might have MCS


23 and we bring them in for history and physical.

24 But we had another set of questions that

25 were used by a California study in MCS in which we



171

1 asked the individuals -- and these, of course, are


2 questions that are given both to veterans and to our

3 civilian subjects -- whether there were specific

4 situations related to chemical exposure which made

5 them feel ill.


6 And if the individual endorsed five out of

7 eight of these at the moderate severity, then we would

8 also say that they might have MCS. And you can see


9 these are the sorts of odorants that the chemically

10 sensitive individual over and over again tells us are

11 problems for them.

12 Now, what we did then is we got these


13 questionnaires back and the put them together to look

14 at on pencil -- on paper what is the possible

15 prevalence of CFS using the '88 more rigid criteria,


16 because, after all, we did this before 1994, before

17 those 1994 criteria were out. And so, what we found

18 was about a five-percent -- when we then went to the

19 group of veterans who were on the registry without


20 fatigue, this was a random group, we found about five

21 percent of them appeared to have CFS and three percent

22 chemical sensitivity.


23 Now, the data on chronic fatigue syndrome

24 suggests that probably the most comparable data came

25 out of Boston from a CFS center here in Boston, and



172

1 suggested a prevalence of a -- based on a thousand


2 consecutive patients to the doctor's office, a

3 prevalence of about .3 percent.

4 Now, obviously, this is a much higher

5 number and this number is based on paper and pencil


6 and it's quite possible, therefore, that on a face-to-

7 face sort of basis that that number will come down,

8 but this did support the hypothesis that we had in our


9 mind that perhaps there was something about serving in

10 the Gulf that might have produced a mini-epidemic of

11 chronic fatigue syndrome.

12 And also, quite a few of these patients --


13 and there's a good overlap here -- have chemical

14 sensitivity.

15 Now, as far as the patients -- as far as


16 the veterans on the registry who told the registry

17 doctor that fatigue was one of their problems, we see

18 a doubling of that paper and pencil prevalence. So

19 that ten percent seem to report at least the criteria


20 consistent with CFS, and six percent fulfilled that

21 operational definition of MCS that I shared with you

22 just a few minutes ago.


23 Now, what Dr. Ottenweller and I and center

24 staff have done to get going has been to take every

25 Persian Gulf veteran seen at the East Orange VA and



173

1 send them that same questionnaire. Again, what we


2 want to do is identify veterans so that we can fine

3 tune our protocols and get started.

4 And based on those data, again we're

5 seeing about the same prevalence of paper and pencil


6 CFS, five percent, and then if we go to the new

7 relaxed criteria, nineteen percent, many more because

8 that's an easier criteria-- set of criteria to obtain,


9 and about ten percent have apparent chemical

10 sensitivity. Half seem to be with CFS.

11 So, there's a big overlap between CFS and

12 MCS, but let me make -- let me hasten to say there are


13 chronic fatigue syndrome patients, fifty percent of

14 them down here, that don't have any chemical

15 sensitivity. So, it's a very interesting population


16 that we've then been able to identify.

17 Now, I'm just going to mention the

18 projects, and then Dr. Ottenweller will go into each

19 of them in detail.


20 The first project, which is headed by

21 Howard Kipen who's head of occupational medicine at

22 our sister medical school, is a health and exposure


23 surveyor of Persian Gulf vets, and a major reason for

24 that survey, besides identifying risk factors, is to

25 identify veterans who we can invite to come to East



174

1 Orange to participate in our research.


2 Now, project two is the project that I am

3 the PI, principal investigator on, and this really is

4 a project that allows me to build on the template of

5 chronic fatigue syndrome, because our center, our CFS


6 center for the civilians has been in existence since

7 1991, and we know a lot about the physiological and

8 psychological accompaniments of chronic fatigue


9 syndrome and so we can really build on that by not

10 asking unnecessary questions of our veterans.

11 And then project three -- and this is the

12 time line, so we're right -- we're in the heart of


13 project one right now, we're well into project two,

14 and project three begins after project two, and that

15 is to look at exertion and chemical stress on vets.


16 And the other project, the basic science

17 project, is one which is now ongoing to look at the

18 effects of genetics and stress on responses to toxins.

19 Now, there are certain things that are


20 sort of important about the way we put our center

21 together that I want to share with you.

22 First of all, as I've said already, that


23 our Gulf center is tightly interfaced with the two

24 centers in our medical school, the one, the NIH-funded

25 CFS Cooperative Research Center at our medical school



175

1 and at the other medical school, the Robert Wood


2 Johnson Medical School, a similar NIH-funded set of

3 studies on chemical sensitivity.

4 That allows us, therefore, the ability to

5 compare the Persian Gulf veteran with chronic fatigue


6 and multiple chemical sensitivity to the civilian with

7 the same problems.

8 And then we have the control groups from


9 the NIH-funded center, so that instead of just

10 studying veterans with CFS and era vets that don't

11 have problems, we are then able to compare the veteran

12 with the civilian.


13 So, what should be obvious is that we are

14 focusing our attention on veterans that have two

15 problems, chronic fatigue and chemical sensitivity.


16 Obviously, as was discussed in the earlier

17 presentation, veterans do have other problems, but in

18 order to use our resources appropriately, we're

19 focusing on what seems to be a real problem, chronic


20 fatigue and chemical sensitivity, and using our

21 expertise in order to move the process ahead for the

22 veteran. And so, we can use specific hypotheses,


23 again based on ongoing studies with civilians.

24 Now, because the chronic fatigue and the

25 multiple chemical sensitivity patients in the



176

1 community are about eighty-five percent women, our


2 plan is to skew our subject selection toward women.

3 Only about seven percent of Gulf War military were

4 women, about fifty percent more than that are on the

5 registry, so women are over-represented on the Gulf


6 War registry, and our plan is to bring in even more

7 women than that so we have a direct comparison between

8 our veterans and our civilians with chronic fatigue


9 syndrome.

10 And last, that we then have this broad

11 multidisciplinary approach so that we can address many

12 of the issues related to chronic fatigue and chemical


13 sensitivity.

14 Now, let me just bring you to where we are

15 today at this meeting.


16 The call for proposals went out in January

17 '94 and about two weeks after we heard that the VA

18 wanted to establish centers, we decided to go the

19 mini-epidemiological survey route that I just reported


20 to you. So, we -- that was a considerable effort to

21 get the questionnaires out and get them back in the

22 short amount of time between the announcement and our


23 submission.

24 In October we learned that our center was

25 funded -- was approved, and funding was received



177

1 several months thereafter. At the time of approval we


2 didn't have a Gulf War center at the East Orange

3 Medical Center and so significant construction and

4 alteration was necessary of a wing of the hospital

5 which was then dedicated with Dr. Kizer's visit in


6 April of '95.

7 From October -- really from January

8 through July we staffed and we then started buying the


9 equipment for the center, and we have -- and we

10 finished finalizing our protocols. And I'm delighted

11 to say that the last protocol finally went through the

12 IRB last month. So, all our protocols are now through


13 the IRB and are up and going.

14 We began seeing veterans in July. Our

15 epidemiological survey, which is mailed to twenty-


16 eight hundred registry vets, went out in September,

17 and we are now entering those data and will finish

18 data entry by early next month.

19 So, let me now turn the podium over to Dr.


20 Ottenweller.

21 DR. OTTENWELLER: The first project, as

22 Dr. Natelson mentioned earlier, is a fairly


23 substantial epidemiological survey of registry

24 veterans. We've mailed that to twenty-eight hundred

25 veterans, as he said, and it's designed to understand



178

1 the range of the medical problems in the veterans, to


2 estimate the incidence of chronic fatigue and chemical

3 sensitivity, and importantly, to recruit potential

4 subjects for projects two and three.

5 This survey was in development for a


6 number of months. We initially formulated the

7 questions and brought in -- I think it went through

8 three different revisions with focus groups of


9 veterans to make sure that we were asking the

10 questions that we should be and that they understood

11 the form in which we were asking the questions.

12 The survey has been distributed in waves


13 and follow-ups with reminder postcards and second

14 mailings to non-respondents have taken place.

15 The questions that we asked are really to


16 characterize a whole series of parameters, and I'll

17 talk a little bit more about that in a minute, but to

18 collect demographic, psychosocial information and

19 medical data, looking both before and after their


20 service in the Gulf, and then to actually characterize

21 their experiences when they were in the Gulf.

22 And an overriding idea or approach that we


23 took in looking at this survey was not only to focus

24 on CFS and chemical sensitivity, but also with the

25 review of systems to let the veteran tell us what the



179

1 problems was, and I'll allude some more to that in a


2 minute.

3 It starts out, the survey, your staff is

4 provided a copy of that. I don't know if it's been

5 distributed to all of you. But it starts out with a


6 review of symptoms and importantly a rating of symptom

7 severity which is a little unusual in this kind of

8 survey. And it permits us to estimate the relative


9 severity of the symptoms when we compile this data and

10 to do some of the multi-factorial analysis that we're

11 going to do with it.

12 Then we take the approach of providing the


13 opportunity for the veteran to rank the top six

14 symptoms they had and to explore those in detail so

15 that we can ask questions about severity, time course,


16 how soon after the war ended did the problem arise.

17 And then in that section we also provide

18 the veteran with the opportunity to describe the

19 problems in more detail in their own words, again,


20 trying to understand more about the particular

21 symptoms and how they feel about them.

22 The next section of the survey allows us


23 to identify veterans who might be suffering from

24 chronic fatigue or chemical sensitivity and PTSD as

25 well, much like our earlier survey forms that Dr.



180

1 Natelson talked about.


2 And then finally we asked them a series of

3 questions related to exposure during the Gulf and

4 their experiences, both stressful experiences as well

5 as chemical exposures and attitudes towards command


6 and how they were treated. Again, looking for items

7 that later we could correlate with the presence or

8 absence of specific types of illness.


9 We know that the latter are subject to

10 biases of self-report, but we feel it's important to

11 collect this data, and we will be assessing the DOD

12 database on unit deployment to try to supplement this


13 exposure information that we're getting from the

14 veteran.

15 To date we've received about fourteen


16 hundred responses, and that represents a just over

17 fifty-percent response rate, but they're still coming

18 in. We expect to attain our target of sixty percent

19 response rate. Data entry is proceeding and should be


20 completed in the middle of next month, and we expect

21 to have the full analysis of that data done by the end

22 of this year.


23 The second component that we're working

24 with here in project one, again, is to identify

25 veterans for participation in project two, a detailed



181

1 physiological and psychological assessment of Persian


2 Gulf veterans, again, driven by our work with

3 chemically sensitive and chronic fatigue patients,

4 civilian patients.

5 Dr. Natelson has described the CFS and


6 chemical sensitivity criteria that we use. We'll be

7 expecting to get four groups, those with CFS alone or

8 chemical sensitivity alone, a combined group because


9 of the significant overlap between them, and a group

10 of health control subjects that will also be Persian

11 Gulf veterans.

12 So, I thought I'd just show you very


13 quickly how we intend to screen for the healthy

14 veterans, because they will have been deployed

15 veterans. They will not be sick with a fatiguing


16 illness or other serious medical illnesses, not taking

17 any significant medications, no prior treatment for

18 some psychiatric disorders. And again, in terms of

19 our questionnaire, not responding as if they have


20 chemical sensitivity.

21 When he went over all of the symptoms,

22 we're asking our healthy group not to endorse any of


23 those symptoms for chemical sensitivity or for chronic

24 fatigue. We might have gone overboard in that, but it

25 turns out that we've been successful at identifying a



182

1 significant number of healthy veterans that will be


2 sufficient for the size of the control group that

3 we'll be studying here.

4 The first part of this study will look at

5 -- as we bring these patients into the East Orange VA,


6 they get a very thorough medical evaluation

7 specifically by physicians trained in looking at

8 chemical sensitivity and chronic fatigue. When we do


9 the surveys and identify these people again, we're not

10 making a diagnosis and they will not be entered into

11 the further parts of our study until this phase

12 wherein the face-to-face interview the clinician will


13 make the affirmative diagnosis of chronic fatigue or

14 chemical sensitivity.

15 We're also looking for any other medical


16 problems at that that time that they might have. And

17 blood samples are drawn and tested to rule out any

18 other potential causes of fatiguing illness, thyroid

19 screens, ANA for rheumatoid arthritis, and a series of


20 lyme tests and a series of exclusion criterion that

21 were used.

22 They receive a complete psychiatric


23 evaluation as part of this medical evaluation by a

24 clinical psychologist, and it's to determine the

25 presence of any illnesses that are, again, the



183

1 exclusion criteria for studies of chronic fatigue and


2 chemical sensitivity, as well as making specifically

3 a diagnosis of PTSD and other mental illnesses.

4 Then if the subject is not excluded at

5 that point, they'll go on to the other parts of this


6 study.

7 The first one is looking for potential

8 viral and immunological factors that might be present


9 in Persian Gulf veterans. Again, those with chemical

10 sensitivity and chronic fatigue compared to the

11 healthy veteran.

12 And we're looking in terms of viral


13 factors at Epstein Barr virus, cytomegalovirus and

14 HHV-6 and 7 now, and we will probably be adding HHV-8

15 that's just been recently identified. And we're


16 looking for the presence of those viruses in mRNA, or

17 mRNA for those viruses extracted for peripheral blood

18 lymphocytes.

19 In addition to that, we're also assaying


20 cytokine messenger RNA in the peripheral blood

21 lymphocytes to look for signs of covert infection.

22 You've often heard about the problems -- I presume the


23 problems about diagnosis leishmania and the fact that

24 there are presumably people that have it and you can't

25 pick up the pathogen. But an infection like that



184

1 should alter the ratios of some of the cytokines and


2 we should then be able to get an index or an idea

3 about whether there might be covert infection.

4 And in addition to that, both the viruses

5 that we're looking at and the cytokine have all been


6 hypothesized to be connected with chronic fatigue

7 syndrome. In particular, for the cytokines, that came

8 about with therapies where they were treated with IL-2


9 and interferon gama in clinical trials and induced

10 severe fatigue in the patients,in addition to some of

11 our findings in civilian populations where some of

12 these cytokines might be elevated.


13 The next step is to do a thorough

14 psychiatric/psychological behavior, a

15 neuropsychological evaluation of these four groups,


16 and in particular we're examining, for example,

17 lifetime traumatic experiences to determine whether a

18 history of trauma prior to the war might have

19 contributed to the development of illness after the


20 war.

21 In addition, we're studying coping

22 strategies and social support structures before and


23 after deployment to see if those might have influenced

24 the development of illness.

25 In addition to that, all subjects will



185

1 receive an MRI which we have reported in several


2 studies to be abnormal in a significant population of

3 CFS patients, and the results there will be correlated

4 with the performance on a battery of

5 neuropsychological tests aimed at uncovering


6 information processing and memory deficits. Again,

7 what we've done is taken the specific findings on

8 civilian CFS patients and where we know these tests


9 are abnormal and are checking to see if they're also

10 abnormal in the Persian Gulf veteran with fatigue.

11 The fourth part of this study is to look

12 at autonomic factors and stress reactivity. We have


13 noted, as have others, an autonomic disregulation in

14 chronic fatigue. In particular, the Baltimore group

15 at Hopkins doing tilt testing on chronic fatigue


16 patients. We started doing tilts before they

17 published their information because we also had

18 developed data of autonomic dysfunction.

19 And we then have developed a series of


20 tilt tests, pace breathing and valsalva maneuver to

21 assess potential abnormalities in autonomic function.

22 And what we've seen in the civilian CFS patients is a


23 presumptive hypovagal state, and we can assess that by

24 looking at the EKG signal through the mathematical

25 techniques of heart rate spectrum.



186

1 In addition, we're looking at


2 cardiovascular reactivity to cold presser tests --

3 that's an ice pack on the forehead -- speech

4 preparation and mental arithmetic. And our hypothesis

5 is that although we may see normal autonomic function


6 basally, under the face of some of these challenges we

7 may uncover an autonomic dysfunction that occurs to

8 the people when they undergo a cognitive stressor or


9 a physical stressor, and that that autonomic

10 dysfunction contributes to their fatigue, that they

11 can't maintain that level of activity because

12 something goes wrong.


13 As the final part of this project, and

14 actually at the time of the medical exam, the veterans

15 will receive a caffeine breath test which assess his


16 hepatic cytochrome P450 IA2 activity in the liver.

17 And the purpose of this test is to provide a

18 cumulative estimate of exposure to aromatic

19 hydrocarbons over the past four to five years. This


20 enzyme remains up-regulated for that long. The

21 problem is that it's only been validated for some very

22 high exposure situations, and what we're attempting to


23 do, then, is to see if we can detect low exposure,

24 relatively low exposure to the aromatic hydrocarbons

25 and see then if that might distinguish or if that's



187

1 correlated first with what we can get from exposure


2 assessment and then ultimately to provide an objective

3 marker for low-level exposures to the aromatic

4 hydrocarbons.

5 We've now seen thirty-two veterans in our


6 center for project two, and they're at various stages

7 of going through each of these protocols that I've

8 described. Our goal is to study about fifty subjects


9 in each of the four study groups over the course of

10 this project. And although we have accumulated some

11 data, we would clearly prefer not to comment on that

12 at this time for fear that might change as we


13 accumulate reasonable numbers of subjects in each of

14 those groups.

15 Does anybody have any specific questions


16 they'd like me to stop here or to go on to the next

17 set of studies?

18 CHAIRWOMAN LASHOF: Let's stop at this

19 point and take questions now.


20 Okay. I guess you can go ahead. You're

21 doing a good job so there are no questions.

22 DR. OTTENWELLER: Oh. Okay.


23 Project three is scheduled to start next

24 year, and it's designed to probe reactivity to

25 environmental challenges, including chemical exposures



188

1 and exertional stress.


2 Again, the idea is the reactivity to these

3 challenges either in the environment or with exertion

4 produce an abnormal response in the civilian CFS and

5 chemically sensitive patient, and the question is do


6 we see that same kind of maladaptive response in the

7 Gulf veterans with these two particular problems.

8 I'll make it a little easier for you to


9 read there.

10 The first part of this project, the

11 chemical exposures, will be done at EOHSI down in

12 Piscataway, New Jersey, in their new state of the art


13 human exposure facility. The central issue to be

14 addressed is whether one can identify specific

15 objective responses to chemical exposures in


16 chemically sensitive individuals. What we're trying

17 to do here is separate psychological factors related

18 to both the expectation of chemical exposure and the

19 perception of that exposure from objective indications


20 of responses to the chemical. In the first set of

21 studies we're going to do inhalation exposures to

22 phenyl ethyl alcohol at 7 ppm. Phenyl ethyl alcohol


23 is what gives perfumes the sense or the smell of

24 roses, and it's very common. It's not just in

25 perfumes that smell strongly of roses, but it's mixed



189

1 into almost all perfumes that are combination smells.


2 And a lot of chemically sensitive people report

3 sensitivity to this odor.

4 The second part of this -- and we're going

5 to be measuring them before exposure to look at


6 anticipation, and then to see whether we can get a

7 different response once they actually are exposed to

8 the odor.


9 Some studies like this have been done in

10 chemically sensitive patients and the whole question

11 there becomes whether what you have is a psychological

12 perception that induces a physiological response.


13 We're hoping to get around that by doing a double-

14 blind dermal exposure in these people so that we can

15 use the same substance and induce the same body burden


16 with a patch on the skin that will deliver the phenyl

17 ethyl alcohol transdermally and reach the same levels

18 in the blood without the subject being aware that

19 they're being exposed to the chemical.


20 It'll be a double-blind crossover placebo

21 type of design. And then again, the idea is to

22 measure objective responses without the perception of


23 exposure to the chemical.

24 We'll be looking at physiological,

25 psychological and physical symptoms. Do they report



190

1 that they are being exposed to the PEA instead of the


2 placebo?

3 We'll be looking at cognitive function

4 using a continuous performance task before, during and

5 after the exposure.


6 And then in addition we're looking at

7 cardiovascular and respiratory responsiveness

8 indicative of autonomic arousal, again to see if we


9 can find objective evidence in this double-blind

10 design.

11 We're looking at nasal resistance and also

12 with nasal lavage looking at immune kinds of responses


13 in the nasal epithelium.

14 The second part of this study deals with

15 exertional stress and fatigue. These people report


16 chronic fatigue. We'll be doing primarily that study

17 in chemically sensitive patients, or subjects. In the

18 second part of this we'll be mainly focusing on

19 chronic fatigue subjects.


20 And what happens in those people is if

21 they make a trip to the supermarket or relatively mild

22 exertion, it can put them in bed for days. You and I


23 could recover from that even relatively moderate

24 exertion in a couple of hours and they might be out

25 for weeks.



191

1 And so what we're going to do is to take


2 these people and give -- and we've successfully done

3 that in the civilian population -- and give them a

4 maximal exercise test, and then give them -- follow

5 that with a sub-maximal treadmill exercise. It gives


6 them a standard workload, relative workload. We're

7 going to work them at about seventy percent of their

8 VO2-max for about thirty minutes on a treadmill.


9 That gives us a standard stimulus, an

10 exercise stimulus across groups, even if their

11 absolute workloads are very different between the two

12 groups.


13 And then we can look at hormonal and

14 cytokine responsiveness to exercise. In fact, we're

15 going to look at the same cytokines I outlined for


16 project two just a minute ago, and we're looking at a

17 series of hormones including adrenal cortical

18 hormones, catecholamines from the adrenal medulla,

19 growth hormone, prolactin; again, a number of hormones


20 whose abnormal function can be associated with

21 prolonged fatigue. And the same thing with the

22 cytokines.


23 We're just in the process. We've finished

24 collecting the samples but not doing the assays yet on

25 a study exactly like this in our civilian CFS



192

1 patients, and what we're going to do then is use that


2 to pare down and select specific parameters that we

3 will look at in the Persian Gulf veterans, and instead

4 of the largely exploratory nature of this project in

5 civilian chronic fatigue patients where we're looking


6 at twenty or thirty different parameters in them.

7 In addition to that, we're looking at this

8 prolonged fatigue and we're looking at cognitive


9 impairment. We find -- I'm fairly certain that we

10 find now that subjects after one of these exercise

11 challenges will have some significant cognitive

12 impairment. That is the mental problem, the


13 concentration and memory problems reported by those

14 with chronic fatigue may be associated with the

15 physical aspects of their fatigue somehow flowing over


16 into their cognitive processes.

17 In addition to these studies on exercise

18 tolerance, we have used the resources of our center to

19 collaborate with a group at the University of


20 Pennsylvania to study bioenergetics using their large

21 magnet facility down there. We've been doing that for

22 the past three years in civilian CFS patients and a


23 small group of fatigued veterans were seen there, and

24 we found actually very significant deficits in

25 oxidative metabolism in the mitochondria from those



193

1 severely fatigued veterans which are indexed in vivo


2 in a working calf muscle inside the NMR magnet.

3 And we heard last week, actually, that the

4 Department of Defense has funded those studies for

5 three years now to examine muscle function in the


6 fatigued veterans that will go through this part of

7 the project of our center, so that some of our

8 veterans then will go down to Philadelphia with a


9 detailed assessment of muscle strength and function

10 and looking at oxidative metabolism.

11 Project four is an animal basic science

12 project that's an attempt to get a handle on the


13 perplexing problem of why some veterans in a military

14 unit, the first, the eighth and the twelfth veteran or

15 service person became ill and yet other people are


16 perfectly healthy in between there.

17 And from our work in behavioral medicine

18 and stress, we hypothesize that there might have been

19 individual differences in susceptibility to stress


20 that might have caused some veterans to over-respond

21 to stress and that that inappropriate stress response

22 made them more vulnerable to environmental exposures.


23 In the case of veterans, such differences

24 in susceptibility may be due to the psychosocial

25 factors or coping strategies or others that we've



194

1 explored retrospectively in project two.


2 Instead, in project four we're using a

3 genetic difference between two strains of rats. The

4 rate that we've been studying for the last, oh,

5 fifteen or twenty years, the Sprague-Dawley rat, but


6 in comparison to the Wistar-Kyoto rat which is a

7 genetic strain which are stress hyperresponsive

8 compared to the Sprague-Dawley rat.


9 What we're doing is superimposing upon

10 that difference in responsiveness our chronic stress

11 model that again we've been studying where we stress

12 rats for three consecutive days, and what we're


13 interested in here is not the acute response to

14 stress, but we're interested in those responses or

15 persistent responses that last anywhere from twenty-


16 four hours up to two or three weeks after the stress

17 is over, reasoning that the longer you get an abnormal

18 physiology after stress, the more pathogenic capacity

19 that disturbed physiology might have.


20 We've already collected extensive

21 neuroendocrine, physiological and immunological,

22 biochemical, behavioral and cognitive data on Sprague-


23 Dawley rats over the past ten years, and we're now

24 comparing those responses to WKY rats. We had

25 originally proposed, if you've looked at our original



195

1 proposal, to look at whether these responses, these


2 stress responses modified the toxicity of nerve gas

3 agents and dioxins.

4 However, we've revised our -- if you -- in

5 terms of the chronology, the grant was prepared before


6 the NIH consensus conference or a number of other

7 conferences, and as we attended those conferences we

8 were convinced that there is less likelihood that the


9 Persian Gulf veterans were exposed to nerve agents

10 than at the time we prepared the proposal. And

11 there's been increased interest now in the possibility

12 that pyridostigmine bromide might be contributing to


13 the problems.

14 So, what we've done is switched over and

15 looked at the idea that this stress and genetic


16 background might modify the response to the

17 pyridostigmine in the veteran.

18 This points to one of the important facets

19 of our center, and that is we wrote a very narrow,


20 well-defined proposal but that we're getting

21 continuing updating of information about potential

22 exposures from our surveys, from the hearings of your


23 committee, and that what we've done then is to put in

24 place a team of people that can adjust to various

25 findings and can then move off of that to help to



196

1 solve the new problems that might be identified by


2 subsequent research.

3 Although it's not central to your mission,

4 one of the purposes of the VA in establishing these

5 Environmental Hazards Centers was to have an ongoing


6 program in place so that they could address new

7 environmental problems that our servicemen might face.

8 If something, for example, comes back from Bosnia,


9 these centers will be in place to address that

10 quickly, the infrastructure will be there to go

11 forward with that.

12 Your task to us specifically asked us for


13 recommendations. If you'd like, I'd stop now and

14 address any questions about the experiments that were

15 going on. The last -- I have just one more figure to


16 talk a little bit about specific recommendations that

17 we might have.

18 CHAIRWOMAN LASHOF: I think we'd better

19 stop and get the questions. You're really -- we've


20 hit our time limit, but we got started a little late

21 so we'll give you a little more time to give us the

22 recommendations.


23 Does anyone have any questions?

24 I have a couple myself while the rest of

25 the committee is thinking about some more.



197

1 Back to your first study you presented


2 where you're looking at some of the viral and

3 immunologic and etiologic aspects, have -- are you

4 familiar with the work of Garth Nicholson and his

5 postulative mycoplasma?


6 DR. NATELSON: I'm aware of the postulate.

7 I have not seen the data.

8 CHAIRWOMAN LASHOF: And you at this point


9 are not looking for or trying to coat tromycoplasma.

10 DR. NATELSON: We're not, Dr. Lashof.

11 Here's our logic.

12 CHAIRWOMAN LASHOF: Are you able to if you


13 thought this was necessary?

14 DR. NATELSON: Well, we're collaborating

15 with the chair of microbiology at Stonybrook and we


16 would be able to adjust -- and we have already

17 adjusted -- his interest has been in the herpes virus

18 family, and of course our interest in the herpes virus

19 family is these are viruses that infect, go latent and


20 become reactivated.

21 And so what we're really doing is looking

22 across the herpes virus family, across Epstein Barr,


23 CMV, and now the newly described human herpes virus 6

24 and 7. And that was targeted because of the idea that

25 chronic fatigue syndrome may be reactivated herpes



198

1 virus because there is that infectious and that flu-


2 like component to the illness.

3 So we really again, I think my colleague

4 Dr. Ottenweller made clear that we have the ability in

5 our center to make coarse changes, and we have been


6 able to build bridges and those include

7 microbiological and immunological bridges with people

8 that have tight liaisons with people outside of the


9 herpes virus area. So if it looks like mycoplasma is

10 going to be a tenable candidate, yes, we would be able

11 to make appropriate changes.

12 CHAIRWOMAN LASHOF: Thank you.


13 You've been looking at chronic fatigue

14 syndrome for some time. Do you have any hypotheses as

15 to the etiology, obviously of the herpes? There's one


16 you've mentioned. Are there others that you think are

17 hot prospects that you're actively pursuing?

18 DR. NATELSON: Well, Dr. Lashof,

19 hypotheses as you know are a dime a dozen, and proving


20 the hypotheses, the elbow grease, that's, you know,

21 that's the hard part. So, I don't like to speculate.

22 I mean, you know, there are hypotheses still -- this -


23 I picked up Neurology Magazine yesterday and saw --

24 read an editorial about fibromyalgia, which we believe

25 is just a rheumatologist's name for chronic fatigue



199

1 syndrome, in which he again -- this particular person


2 views it as no problem, somatization, hypochondriasis.

3 So, we have this extreme political range. It's like

4 politics, you know, from the extreme left wing to the

5 extreme right wing, where the extreme left wing is


6 that these people are shirkers, and the extreme right

7 wing it is one sole virus.

8 And I think that what we've tried to do in


9 the NIH-funded center is to not worry about the ink on

10 the page but to ask the testable questions. And our

11 advances in the civilian population seem to be the way

12 medicine always advances. What it is is careful


13 description and then the use of stratification.

14 Obviously if you took a hundred patients with sore

15 throat back in 1944 or '38 when penicillin was found


16 and you treated them and only ten got better, that

17 would not make the front page of the Times. But if

18 you took those ten patients, the ten out of a hundred

19 that had culture-positive strep and you gave them


20 penicillin and all ten got better, okay, that would be

21 very, very important.

22 So, what we've done is we've stratified in


23 our civilian population based on mode of onset, is it

24 sudden or gradual, and based on the presence or

25 absence of an axis one disorder.



200

1 And we have data that are really just


2 tentative but that suggest that that is a wise way to

3 go.

4 The one thing that we have now put

5 together in a manuscript is the cognitive testing in


6 those stratified -- again, these are civilian patients

7 with CFS. And importantly to me as a neurologist, the

8 group of patients that has the greatest difficulty in


9 cognitive processing is the group of patients that has

10 no evidence of any psychiatric problem at all.

11 Now, I must hasten to say that the

12 cognitive problems that we are able to document by


13 careful neuropsychological testing are not great; they

14 are statistically significant, they exist. We are not

15 talking, thank God, about a dementia here. But the


16 patient is disabled by this. This is a very

17 disruptive process.

18 But, in other words, if the group of

19 patients that has the more -- the more significant


20 cognitive processing problem are the group without any

21 psychiatric problem, that suggests to me that they

22 have an encephalopathy. So that's the group now, see,


23 we're coning down from a syndrome which is a set of

24 signs and symptoms that's very large, using the

25 stratification techniques to develop a more homogenous



201

1 group, and that's the group then that we're willing to


2 bet will have the kind cytokine or viral abnormality

3 that might be watered down if we didn't stratify.

4 So that's the tactic that we've used in

5 the civilians and that we're going to apply exactly


6 the same to our veterans.

7 CHAIRWOMAN LASHOF: Okay. Thank you.

8 And another question on your environmental


9 group. The MCS group of patients that you're

10 considering. We heard last month -- I guess it was

11 earlier this month, wasn't it -- from Claudia Miller,

12 Dr. Claudia Miller, about the need to have an


13 environmentally clean room, specially constructed room

14 to try to test. What's your reaction to the need for

15 that and how do you feel we'll get any closer to being


16 able to define MCS?

17 DR. OTTENWELLER: We have, in fact, been

18 in the phase, began before the center began, of

19 constructing just such a facility. That's the human


20 exposure facility that we talked about down in

21 Piscataway, New Jersey, that has like GC meospecs on

22 the input line and the output line of all the air flow


23 to this. It's all stainless steel. There's no

24 fabric.

25 We had to go through special precautions



202

1 to put a computer monitor in there to do our


2 continuous performance testing. That has to be

3 separately sealed off and vented separate from the air

4 to the rest of the room.

5 And it seems to us that bringing the


6 patient in for, you know, a half a day or a day's

7 worth of study where they're bringing stuff from the

8 environment in with them, car exhaust fumes just to


9 get to the facility, it's important for us to get that

10 -- to have the facility as clean as possible for those

11 people, particularly to get perhaps what may be

12 relatively small changes to be measured in the


13 laboratory under these artificial situations.

14 So, that facility is up and in the past --

15 about a month ago it received the full IRB approval


16 which was exhaustive, to say the least, to expose

17 people to some noxious odors, not what we're doing but

18 for some other work there. And so we think it

19 provides us with the facility to do -- I keep asking


20 people, but I believe still for the first time, these

21 double-blind control studies that will really get us

22 at the objective responses in chemically sensitive


23 patients for the very first time anywhere.

24 CHAIRWOMAN LASHOF: Thank you very much.

25 Other questions? Anyone?



203

1 Okay. What about your recommendations?


2 We'll move right along.

3 DR. OTTENWELLER: Okay. When chartered

4 with this and having attended a number of these

5 conferences, we've thought hard about what would help


6 us and the veteran. And one of the problems is that

7 we recognize that the Department of Defense isn't

8 tasked particularly with some of the recommendations


9 that we're going to make. But I would make the case

10 that what we've seen here in terms of the registry is

11 that approximately five to ten percent of veterans

12 returned from the Gulf and have medical problems that


13 they associate with their service there.

14 And the publicity surrounding these

15 medical problems is perfectly appropriate, but it may


16 lead to problems recruiting soldiers in the next war.

17 A number of early respondents to our

18 survey have said that they specifically have put off

19 having children -- I believe somebody told you this


20 morning -- because of fears that their children may

21 have medical problems related to their parent's

22 service in the Gulf. If those kind of fears and the


23 fears of unknown environmental exposures and depleted

24 uranium become large, then there's going to be major

25 problems in recruiting young men and women for the



204

1 next war.


2 So, I think that not only this Committee

3 but the DOD needs to really consider some of the

4 things that we would recommend.

5 The first recommendation is that the


6 Environmental Hazards Centers that you've heard about

7 from Bobby White and Dave Ozonoff and you'll hear from

8 Peter Spencer about the Portland work, they've


9 established a really substantial infrastructure,

10 experimental approaches to the problems that have been

11 reviewed by outside reviewers, they're collecting a

12 lot of medical information. We've established


13 personal contacts with large numbers of Persian Gulf

14 veterans, and they should really be viewed as a

15 tremendous resource for addressing the ongoing


16 problems of these veterans.

17 It is hoped that there will be a

18 continuing commitment to these centers and the use of

19 them to catalyze other projects that will bring even


20 more expertise to bear on the medical problems the

21 veterans face.

22 For example, in our HIH-funded


23 cooperative research center for CFS there's a program

24 where there's a certain amount of money set aside, not

25 a large amount, but where the local CFS centers review



205

1 and monitor pilot projects for unexpected new problems


2 that arise or approaches that might be productive, and

3 some kind of idea -- again, thinking of these

4 Environmental Hazards Centers as a regional resource

5 we think is important.


6 For example, again, we've leveraged some

7 of our resources in our center into collaboration with

8 experts on muscle physiology that were really very far


9 beyond the scope of our original center proposal. And

10 it might help if this coordination and outreach could

11 be supported explicitly in some kind of way.

12 There's been a lot of discussion in your


13 preliminary review and in the recent oversight

14 committee looking at AIDs research at NIH about the

15 issue of coordination of research efforts and


16 oversight. And we clearly recognize it's important to

17 reduce redundancy and make sure that absolutely the

18 best science and the most appropriate research is

19 being done. But the three hazard centers do talk


20 monthly in phone conference and have met two or three

21 times and have had much discussions about the issue of

22 standardization of questionnaires and research


23 tactics. And we as a group have decided that too much

24 standardization may cause us to really miss some

25 important, subtle factors that might be contributing



206

1 to the Persian Gulf veterans.


2 Again, we have this coordination, but

3 slight differences in the way we ask questions on

4 questionnaires or the framework, where in the

5 questionnaire the question appears may reveal some


6 subtle nuances that if everybody's asking all the

7 identical same questions that you could really miss.

8 In terms of the issue of duplication of


9 research, that should be held to a minimum, but we

10 should recognize the fact that different research

11 teams will bring different expertise to the same

12 problem. And, again, who knows which particular


13 approach is going to be a breakthrough?

14 We know it's crucial that there be

15 coordination and oversight, but it need not become an


16 end in itself.

17 We've studied ---

18 CHAIRWOMAN LASHOF: I'm going to have to

19 ask you to ---


20 DR. OTTENWELLER: The last two are real

21 short.

22 That we should get more help from the DOD.


23 The idea is to set up prospective plan studies on the

24 ground before deployments so that we can collect

25 medical information before and after their deployment.



207

1 We think that there's a problem with


2 education in terms of the military personnel at the

3 unit level understanding what the specialists know

4 very well about pyridostigmine, for example, or DEET

5 and other pesticides.


6 And I would echo some of the concerns that

7 might have been raised by David Ozonoff earlier about

8 needing just better assessment exposures. Without


9 better assessment we're going to have more of a

10 problem linking specific exposures to specific

11 illnesses that will occur.

12 Thank you.


13 CHAIRWOMAN LASHOF: Thank you very much.

14 We appreciate your coming, and it really is

15 interesting work, and we wish you the best and hope


16 you get lots of answers in a hurry.

17 Now we will hear from the Center for

18 Research and Occupational Environmental Toxicology and

19 the Portland VA Medical Center, Oregon State -- Oregon


20 Health Sciences University. Dr. Bourdette and Dr.

21 Spencer.

22 Is Dr. Bourdette going to be joining you,


23 Dr. Spencer, or ---

24 DR. SPENCER: Dr. Lashof, unfortunately

25 Dr. Bourdette is unwell and has been unable to travel



208

1 to Boston. He sends his apologies. And I will do my


2 best to represent the center.

3 CHAIRWOMAN LASHOF: Very good. Go ahead.

4 DR. SPENCER: Just by introduction, my

5 name is Peter Spencer. I'm a U.K. born American


6 citizen. I'm currently a Professor of Neurology and

7 Director and Senior Scientist at the Center for

8 Research on Occupational and Environmental Toxicology


9 at the Oregon Health Sciences University. I therefore

10 represent the university side of this VA/university

11 enterprise.

12 Dr. Bourdette is the Medical Director of


13 the Portland Environmental Hazards Research Center.

14 Dr. Bourdette is Acting Director of Neurology at the

15 Portland VA Medical Center.


16 Dr. Bourdette, therefore, and I share the

17 responsibility of leading an interdisciplinary team of

18 medical scientists. The acronym for our center,

19 PEHRC, PEHRC has established a close relationship with


20 the Director of the Portland component of the Gulf War

21 Veterans' Registry to facilitate the care and

22 treatment of symptomatic veterans. And our center was


23 reviewed by independently appointed committees of

24 medical scientists prior to its inception and again in

25 March 1996.



209

1 The center's mission is to address the


2 impact on human health of environmental hazards

3 encountered in military service -- past, present and

4 future -- with particular initial focus on unexpected

5 illnesses associated with service in Southwest Asia


6 during the Persian Gulf War. Unexpected illnesses

7 include (1) "viscerotropic" leishmaniasis and (2) a

8 constellation of symptoms designated here as Persian


9 Gulf War Unexplained Illness or Illnesses. The long-

10 term research goal is to develop a solid understanding

11 of the nature of these conditions, their risk factors,

12 and their treatment and prevention. The broad array


13 of fundamental research at PEHRC is supplemented by

14 educational activities, firstly to enrich the training

15 and experience of participating researchers, thereby


16 improving the clinical sensitivity of basic scientists

17 and the scientific rigor of physicians and nurses

18 within the center; and secondly, to respond to the

19 needs of veterans and the public for accurate


20 information and interpretation of data relating to the

21 health effects of environmental hazards associated

22 with military service.


23 The center's research focus concerns

24 environmental factors encountered in military service

25 that pose a threat principally to the neurological and



210

1 musculoskeletal systems; these systems being


2 associated with the dominant symptoms (fatigue, muscle

3 and joint pain, cognitive complaints) of the

4 unexplained illnesses. The gastrointestinal,

5 integumentary and other systems involved in


6 unexplained illnesses also receive research attention.

7 The program seeks to elucidate, in a coordinated

8 manner, the health impact of a wide range of exogenous


9 exposures encountered in the wartime theater.

10 PEHRC comprises, firstly, an Epidemiology

11 and Medical Research Core at the top center; secondly,

12 a Protozoal Disorders Study; and, thirdly, four


13 projects involving clinical and basic research.

14 Projects one and two conduct clinical research with

15 the Research Core, respectively addressing


16 perturbations of higher cortical function and the

17 neuroendocrine basis of unexplained illness

18 musculoskeletal symptoms as they relate to

19 fibromyalgia. Projects three and four carry out


20 fundamental research on the toxicology of selected

21 environmental substances pertinent to the battlefield

22 experience of Persian Gulf War veterans and to


23 military service in the future. The Medical Director

24 oversees the clinical research aspects of PEHRC and

25 has specific responsibility of human subjects enrolled



211

1 in the research programs within the center. The


2 Scientific Director establishes and oversees the

3 research direction of the center. And the center

4 operates under the guidance of an External Advisory

5 Committee composed of national and international


6 experts in medical epidemiology, biostatistics and

7 survey design, infectious disease -- this person is

8 yet to be named -- clinical neuropsychology,


9 toxicology, tropical neurology and cellular

10 neurophysiology. The External Advisory Committee

11 operates both on an informal basis, consulting on

12 specific issues as needed, and a formal basis, with


13 representation at PEHRC Scientific Retreats. The

14 research effort of the center is shared with a Public

15 Advisory Group consisting principally of


16 representatives of veterans' service organizations.

17 Dr. Linda Shortridge-McCauley of CROET, in

18 concert with a second epidemiologist, Dr. Sandra Joos

19 of the VA Medical Center, together with the Medical


20 and Scientific Directors, leads the center's

21 population-based epidemiological survey and case-

22 control clinical study. This is designed to identify


23 risk factors for unexplained illness in those from the

24 northwest United States who were deployed in the

25 Persian Gulf region during the approximately one-year



212

1 period following August 1990. We seek to determine


2 why some veterans who were in Southwest Asia for

3 Desert Shield, Desert Storm and/or desert clean-up are

4 now healthy, that is controls, while others have

5 symptoms and represent cases. The primary research


6 question is thus framed: Are there differences

7 between cases and controls in relation to individual

8 subject factors and environmental exposures in the


9 Persian Gulf theater of war? Environmental exposures

10 in-theater will be educed by, one, stratifying

11 subjects by their deployment period, that is Desert

12 Shield only, Desert Storm only, desert clean-up only,


13 or combinations of the foregoing.

14 Each of these is associated with a unique

15 set of exogenous factors, and by separating these


16 clean deployment periods we believe that we will have

17 a better chance of making associations between illness

18 and exposures; secondly, examining the geographical

19 location in the Persian Gulf within the specific


20 deployment periods; and thirdly, assessing the duties

21 and self-reported data on exposures in the Persian

22 Gulf.


23 This is entirely hypothetical, but it will

24 give you an idea of the type of approach that we're

25 seeking.



213

1 By separating individuals into pre-combat,


2 combat and post-combat periods, and then by crossing

3 that with geographical location, we will -- we hope by

4 determining the distribution of cases by space and by

5 time, begin to get some idea as to whether or not


6 there is any temporal clustering within space or time

7 which may lead us down a particular pathway to focus

8 on specific environmental subsets of exposure.


9 Subsets of environmental exposures.

10 The detailed design of our epidemiological

11 study and case-control study of northwest Persian Gulf

12 veterans has been supplemented by pilot and


13 feasibility studies conducted in three phases. Phase

14 one comprised the execution and analysis of detailed,

15 open-ended interviews with Persian Gulf War veterans


16 reporting a range of symptoms and diverse exposures in

17 the theater of war. Taped transcripts were analyzed

18 for themes relating to knowledge of exposure to

19 chemical, biological, physical and psychosocial


20 factors. Those interviewed and other veterans who

21 generously volunteered their time commented on

22 specific items planned for inclusion in the study


23 questionnaire. The questionnaire was completed and

24 pre-tested, approval was received from the VA and

25 Oregon Health Sciences University human research



214

1 review boards, and the proposed instrument was


2 submitted to the Office of Management and Budget as

3 required which judged the instrument superior to

4 related questionnaires submitted for review at that

5 time.


6 Phase two consists of the development of

7 a working case definition of unexplained illness based

8 in part on an analysis of symptoms recorded on 388


9 forms of registrants in the Portland component of the

10 VA Gulf Veterans' Registry. Our cases must have at

11 least one of the following leading symptoms, that is,

12 greater than ten percent registry prevalence: muscle


13 and joint pain, cognitive changes, abdominal pain with

14 or without diarrhea, skin and/or mucous membrane

15 lesions or unexplained fatigue. Symptom onset must


16 have occurred during or following the Persian Gulf

17 War, persisted for at least one month and be present

18 during the three-month period preceding clinical

19 examination by PEHRC staff. Analysis of medical


20 records of a subset of Portland veteran registrants,

21 that is 222 subjects, revealed that only nineteen

22 percent had symptoms which were fully explained by the


23 coded registry diagnoses, substantially lower than the

24 percentage reported nationally.

25 Phase three was a feasibility study of a



215

1 random sample of 422 Persian Gulf War veterans drawn


2 from a Department of Defense Manpower Data Center data

3 tape of Oregon and Washington residents. These

4 veterans received a mailed questionnaire describing

5 the proposed plan for a formal epidemiological survey.


6 Potential response rates and barriers to participation

7 in the planned study were identified, and appropriate

8 modifications introduced into the research protocol.


9 The final survey which commenced in December 1995 is

10 representative of the geographical distribution of all

11 Oregon and Southwest Washington residents in the DOD

12 database who are eligible for our study. Sampling


13 strategies and power analyses for this survey were

14 developed with the assistance of a survey specialist

15 and a biostatistician who were both independent of the


16 center. Standard algorithms are used to identify

17 potential cases and healthy controls from the sample

18 responding to the mailed survey. Potential cases and

19 controls are recruited for a comprehensive clinical


20 and neurological examination, including Leishmania

21 tropica screening, and assessed for psychological,

22 neurobehavioral and psychosocial factors in project


23 one, and fibromyalgia, project two. Samples of blood

24 and skin will be taken for additional studies,

25 including those related to cellular DNA damage and DNA



216

1 repair and blood will be stored for potential future


2 studies as needs arise.

3 The epidemiological survey is being mailed

4 to -- in stages to approximately 3,000 northwest

5 Persian Gulf War veterans in '96-'97. From those who


6 respond, a total of 250 cases and 250 controls will be

7 recruited for the clinical case-control study. We

8 have achieved a satisfactory questionnaire response


9 rate from the first mailing wave, all 387, and we have

10 begun clinical assessment of cases and controls. Our

11 goal is to examine 20 subjects per month. A team of

12 clinicians conducts the examinations and obtains


13 specialized consultation as necessary. The Portland

14 VA Medical Center has assumed responsibility for the

15 majority of the clinical screening costs, and the


16 Occupation Environmental Toxicology Center at the

17 University has contributed support staff, travel and

18 consultant costs, and the facilities of its Toxicology

19 Information Center.


20 Multivariate analyses will be conducted to

21 compare cases and controls with respect to deployment

22 period, geographical location, self-reported exposures


23 and psychophysiological factors. These analyses

24 should allow us to develop a hierarchical risk profile

25 for Persian Gulf War unexplained illnesses.



217

1 Analysis of the early responders,


2 approximately sixty percent of anticipated, to the

3 first mailing wave of our population-based random

4 survey shows the following interesting but -- I

5 emphasize -- very preliminary illustrative findings.


6 First of all, our target population is

7 highly mobile and actively employed. We have found

8 that these veterans require incentives to participate


9 in surveys and clinical protocols, as well as

10 intensive tracking and follow-up.

11 Secondly, symptom frequencies in these

12 veterans are closely comparable to those reported by


13 the Centers for Disease Control following their

14 analysis of deployed subjects in Pennsylvania and

15 Florida military units.


16 Thirdly, a majority of symptomatic

17 respondents states that they have not entered the VA

18 Gulf Veterans' Registry. A majority of symptomatic

19 respondents.


20 And fourthly, approximately half the

21 respondents replied affirmatively to the question "Do

22 you believe you were exposed to chemical or biological


23 warfare agents at any time while in the Gulf?"

24 The protozoan disorders study is led by

25 Dr. Michael Riscoe of the VA Medical Center. Clinical



218

1 assessment of cases and controls includes the


2 examination, as I mentioned, of serum samples for

3 antibodies to Leishmania tropica, the sand fly-

4 transmitted protozoan parasite responsible for the

5 unexpected illness of "viscerotropic" leishmaniasis.


6 This disease was identified by others in a small

7 number of Persian Gulf War veterans with twelve

8 verified cases and a similar number of suspected


9 cases. The possibility of prolonged latency and

10 apparent clinical dormancy, up to twenty years,

11 underlines the need to include L. tropica, we believe,

12 among the potential risk factors for the unexplained


13 illnesses.

14 Serum analysis for L. tropica is

15 supplemented by original research carried out by Dr.


16 Riscoe focusing on the development of novel

17 chemotherapeutic agents for the treatment of

18 leishmania and other protozoal disorders, for example,

19 malaria, associated with long-term morbidity. Dr.


20 Riscoe's laboratory has developed a mechanism for

21 delivery of chemotherapeutic agents as pro-drugs,

22 which are activated by endogenous oxygen radicals.


23 Based on these findings, Dr. Riscoe's group is working

24 towards the development of a combination

25 chemotherapeutic regimen for leishmaniasis; this



219

1 employs a novel agent of Dr. Riscoe's design together


2 with a standard anti-leishmanial agent. Promising

3 drug efficacy in vitro has been shown for synthetic

4 analogs of a chemical derived from echinoderm. These

5 discoveries have been disclosed to the Department of


6 Veterans Affairs. Future research will focus on both

7 the in vitro and in vivo pharmacological efficacy of

8 the drug against the viseralizing form of L. tropica.


9 Project I. The overall objective of this

10 project is to determine if Persian Gulf War veterans

11 have adverse neurobehavioral or psychological effects

12 result from service in Southwest Asia during the


13 Persian Gulf War. Triggering events, such as

14 environmental exposures, combat stressors and life

15 stressors will be explored in conjunction with the


16 Epidemiology/Medical Core. The project leader is Dr.

17 Kent Anger, and he's working in collaboration with

18 Drs. Binder and Campbell of the VA.

19 Now, veterans in the case-control study


20 serve as the study's subjects for Project I. At the

21 time of clinical examination at the VA, each subject

22 receives a screening assessment with a for-hour


23 battery of psychosocial, neuropsychological and

24 behavioral performance tests. In addition to this

25 screening examination, 25 cases and 25 controls per



220

1 year will be chosen randomly from this group to


2 participate in detailed clinical neuropsychological

3 examinations to characterize the nature of

4 neurobehavioral deficits or disorders in this study

5 population. This examination will include both


6 neuropsychological testing and structured psychiatric

7 interviews. Veterans with post traumatic stress

8 disorder will be invited to come back after two years


9 to assess whether the disorder has progressed.

10 The tests selected for the screening

11 battery required lengthy administration times, offered

12 a bewildering array of administration formats


13 requiring individual explanation and, in some cases,

14 were poorly constructed. We met this challenge, and

15 I believe this has been shared with the subset of this


16 committee by Dr. Anger in former previous weeks --

17 we've met this challenge by developing a user-friendly

18 and consistent computer-administration format that

19 does not require individual explanations for each


20 test. Twelve validated psychosocial tests were

21 selected and developed into this common presentation

22 format to improve acceptability and facilitate


23 administration.

24 The format was programmed on a lap-top

25 computer, and a brief training program developed to



221

1 teach veterans to complete the questionnaires. The


2 newly developed computerized testing format was

3 administered to 20 Persian Gulf War veterans in a

4 pilot evaluation of all 12 psychosocial tests and the

5 prototype training program. Test subjects in the


6 pilot study and in the formal project have been very

7 positive about these test systems.

8 In sum, Project I has developed and


9 implemented a sophisticated battery of tests in a

10 portable package that serves as a screen to assess

11 cognitive function and psychological domains. While

12 the method is playing an important role in the


13 clinical examination of subjects for the case-control

14 study outlined before, it also has the potential

15 utility for the clinical assessment of subjects prior


16 to, during, and following military service in the

17 future. Improved methods for the identification of

18 subjects at risk for psychological illness might

19 reduce the prevalence of future post-war morbidity


20 associated with cognitive dysfunction.

21 Project II addresses clinical and

22 neuroendocrine aspects of fibromyalgia.


23 Fibromyalgia is a diagnosable condition of

24 unknown cause associated with Persian Gulf War

25 unexplained illness-like symptoms, notably



222

1 musculoskeletal pain, and other conditions such as


2 irritable bowel syndrome and restless legs syndrome.

3 Symptoms consistent with fibromyalgia have been

4 reported in veterans returning from previous wars.

5 This clinical research, led by our Chair of Medicine,


6 Robert Bennett, and Andre Barkhuizen and Stephen

7 Campbell of the Portland VA, draws on subjects in the

8 case-control study to determine the relationship


9 between unexplained illness among veterans and

10 fibromyalgia, and the association of this illness with

11 the environmental exposures as defined above.

12 Selected samples of subjects with positive clinical


13 screens for fibromyalgia and depressed serum levels of

14 insulin-like growth factor-1, which is the biological

15 mediator of growth hormone, together with healthy


16 controls, will undergo studies designed to seek the

17 neuroendocrine stress response previously

18 characterized in civilians with fibromyalgia.

19 Neuroendocrine examination will include: growth


20 hormone-stimulation testing with drugs L-DOPA and

21 clonidine, nocturnal secretion of growth hormone, and

22 circadian patterns of cortisol and growth hormone


23 secretion. The results will be examined in concert

24 with the Epidemiology/Medical Core in relationship to

25 deployment period, geographical location, self-



223

1 reported exposures in the theater of war, and


2 psychophysiological factors. And repeat clinical and

3 neuroendocrine testing will be performed on veterans

4 with fibromyalgia and abnormal clinical neuroendocrine

5 findings 24 to 30 months after the initial evaluation


6 to assess the influence of the passage of time

7 following the stress associated with the Persian Gulf

8 War.


9 Preliminary studies have been carried out

10 to determine the frequency of musculoskeletal symptoms

11 in the 388 subjects entered in the Portland component

12 of the VA Gulf War Veterans' Registry. The rate of


13 approximately 30 percent in the Portland sample

14 compares to a 32 percent national rate and a 47

15 percent in the DOD Registry. Our feasibility study of


16 157 shows a comparable, that is, about a 38 percent

17 rate of self-reported musculoskeletal pain in both

18 female and male subjects. Clinical examination of

19 potential cases and controls drawn from our


20 population-based survey has revealed the presence of

21 subjects with clinical criteria consistent with a

22 diagnosis of fibromyalgia, but there are no data, no


23 quantitative data at the present time. The frequency

24 of fibromyalgia in our sample of veterans with

25 musculoskeletal symptoms will be determined as these



224

1 studies progress over the next two years.


2 Identification of veterans with fibromyalgia we

3 believe is an important goal because treatment

4 regimens for this condition are under investigation.

5 Project III looks at the neurotoxic


6 potential of PB and hydrocarbon solvents.

7 The project is directed by Rosemarie

8 Drake-Baumann of the VA and Fredrick Seil, Dr.


9 Fredrick Seil of the VA. This is designed to assess

10 the impact on the nervous system of pyridostigmine

11 bromide and selected aromatic hydrocarbons

12 representative of those found in petroleum-based


13 solvents used for military and civilian purposes.

14 Now, these studies have been performed

15 with structurally and functionally coupled explants of


16 mouse spinal cord, dorsal root ganglia, sensory

17 neurons and striated muscle that together develop in

18 culture in a manner comparable to the development of

19 the neuromuscular system in animals and humans. These


20 combination cultures reproduce normal morphology and

21 physiology. They respond to a wide array of

22 chemicals, including hydrocarbon solvents, in a


23 specific manner that mimics the spatial-temporal

24 pattern of pathophysiology and neuropathology found in

25 animals and humans exposed for similar periods of time



225

1 to the same substances at comparable concentrations.


2 The ability contemporaneously to monitor several parts

3 of the neuromuscular system exposed to known

4 concentrations of the test agents provides a special

5 advantage to the experimentalist focused on toxic


6 mechanisms. Additionally, the same cultures serve as

7 test beds to screen chemicals alone and together for

8 neurotoxic potential.


9 The studies to date have focused on

10 pyridostigmine bromide, which reversibly inhibits the

11 acetyl cholinesterase and thereby helps protect

12 peripheral sites from the effects of nerve gases such


13 as sarin and soman. PB was used, as you know, orally

14 as a nerve-gas-antidote enhancer by an estimated

15 250,000 American service men and women during Desert


16 Storm exclusively. A significant percentage of

17 Persian Gulf War veterans reported symptoms, both

18 expected and unexpected, while on this regimen. Mouse

19 spinal-cord- dorsal-root-ganglia-muscle co-cultures


20 treated with a concentration of pyridostigmine bromide

21 relevant to serum levels likely encountered by Persian

22 Gulf War veterans displayed pathophysiological changes


23 consistent with a site of action at cholinergic

24 synapses. Short-term treatment over minutes has

25 increased spontaneous muscle contractions in a manner



226

1 consistent with the inhibition of acetylcholinesterase


2 and the consequent greater availability of the

3 neurotransmitter acetylcholine at the neuromuscular

4 junction. Prolonged treatment, days to weeks, with a

5 single concentration of PB caused a progressive


6 decrease of muscle contractions and sensitivity to the

7 neurotransmitter in association with pathological

8 changes in the region of the neuromuscular junction.


9 Concentration-effect studies have yet to be conducted.

10 Our preliminary findings appear to be consistent

11 qualitatively with those reported by others in studies

12 of laboratory rodents treated under controlled


13 conditions with large doses of pyridostigmine bromide.

14 While a detailed assessment of the morphological

15 damage induced by PB in organotypic cultures is under


16 way, our studies to date demonstrate a useful model to

17 assess the neurotoxic potential of PB in the presence

18 or absence of other substances.

19 A second area for future study in this


20 project addresses the neurotoxic potential of certain

21 aromatic hydrocarbon solvents. Previous studies with

22 aliphatic hydrocarbon solvents, specifically n-hexane


23 and its metabolites, demonstrated that these cultures

24 reproduce the specific type and spatial-temporal

25 evolution of nerve fiber damage seen in humans and



227

1 animals exposed to n-hexane in uncontrolled and


2 controlled conditions, respectively. Mouse neural

3 cultures will be used to assess in vitro the

4 neurotoxicity of diethyl benzene isomers. These

5 chemicals are representative of a group of aromatic


6 hydrocarbons which, upon systemic exposure, induce a

7 remark blue discoloration of animal tissues and human

8 urine. Previous studies suggest a direct relationship


9 between the chromogenic and neurotoxic properties of

10 these substances which, in laboratory rodents, is

11 initially expressed in the form of hyperirritability.

12 Comparable behavioral effects in humans would be of


13 significance, we propose, both in military and

14 civilian life.

15 Project IV addresses DNA damage from


16 chemical agents and its repair. This project, we

17 believe, is pertinent to both the long-term health of

18 Persian Gulf War veterans and the ability biologically

19 to monitor exposure to chemical agents long after


20 exposure has ceased. Led by Dr. Glen Kisby, Project

21 IV employs the nitrogen mustard drug mechlorethamine,

22 a surrogate for sulfur mustard or mustard gas, to


23 determine the type and quantity of DNA adducts in skin

24 and brain, and the cellular capacity to repair these

25 adducts. While there is no evidence that mustard gas



228

1 was used offensively in the Persian Gulf War, it was


2 stored by Iraq, apparently presently in the theater of

3 operations, and reportedly caused injury to at least

4 one American serviceman. the February 15, 1996,

5 Interim Report of this Committee states that mustard


6 gas was undetectable by the primary U. S. system, the

7 M8A1, "designed to provide early warning of chemical

8 attack during the Gulf War." Regrettably, mustards


9 and other chemical-warfare agents are likely to be a

10 threat in future conflicts.

11 The goals of this study are threefold:

12 Firstly, to determine the type and quantity of


13 specific DNA adducts and the capacity to repair these

14 adducts in control and mustard-treated genomic DNA

15 isolated from normal human skin. Secondly, to assess


16 the relationship between DNA damage, DNA repair and

17 cell degeneration in mouse cerebral cortical cultures

18 treated with nitrogen mustard; and thirdly, to compare

19 and contrast DNA damage, DNA repair and cytotoxicity


20 in primary nerve cell and glial cell cultures, and

21 human neuroblastoma cultures treated with this agent.

22 In vitro cytotoxicity studies have demonstrated that


23 rodent nerve cells and human neuroblastoma cell lines

24 are more vulnerable than rodent astrocytes to low

25 concentrations of the drug. Similarly, the



229

1 restoration of mustard-induced DNA damage by a key


2 DNA-repair protein appears to be more efficient in

3 glial than in nerve cells. The accumulation of DNA

4 damage in nerve cells has unknown consequences in the

5 long term; in other tissues, it has been linked to


6 aging and cancer. Preliminary studies using a tissue-

7 culture model of human skin treated in vitro for days

8 with high concentrations of nitrogen mustard


9 demonstrated reduced immunostaining for the DNA-repair

10 protein in the epidermal cell layer.

11 And the development of a biological marker

12 for mustard exposure would be a useful tool, we


13 believe, in seeking studies to link health effects

14 with chemical exposures. A future goal is to

15 determine whether DNA damage attributable to mustards


16 can be detected differentially in skin biopsies of

17 cases and controls drawn from our epidemiological

18 study of Persian Gulf War veterans.

19 I'd like to conclude the testimony by


20 stating the potential benefits for veterans' health of

21 our research program.

22 First of all, protozoal disorders: The


23 prospect of new drugs to treat protozoan disorders

24 both of tropical and temperate climes, including

25 respectively, malaria, leishmaniasis and giardiasis,



230

1 in terms of temperate-related protozoan disorder.


2 Secondly, fibromyalgia: The prospect of

3 diagnosing and treating veterans with fibromyalgia.

4 Thirdly, with regard to unexplained

5 illness: the determination of the role of exogenous


6 and endogenous factors in the generation of illnesses

7 as a foundation for appropriate treatment and

8 prevention.


9 Fourthly, health screening: The provision

10 of a new, user-friendly computerized tool to screen

11 subjects for psychological health prior to, during,

12 and following military service.


13 Fifth, as a long-term health marker: The

14 prospect of new biological indicators of prior mustard

15 exposure.


16 And sixth, with regard to nerve gas-

17 antidote safety: Clarification of the health hazards

18 associated with the prophylactic use of pyridostigmine

19 bromide as a nerve-gas-antidote enhancer.


20 So, in conclusion, the Portland

21 Environmental Hazards Research Center, directed by Dr.

22 Dennis Bourdette, who unfortunately cannot be here, as


23 I mentioned, has a broad program of fundamental and

24 clinical research pertinent to the future demands of

25 military service, as well as the immediate health



231

1 concerns of Persian Gulf War veterans. We seek to


2 identify risk factors for unexplained illnesses among

3 veterans and the best approaches to treatment and

4 prevention. We also wish to elucidate mechanisms

5 underlying health hazards associated with selected


6 chemicals encountered in warfare and thereby help

7 promote the future well being and safety of our

8 service men and women. These goals, we believe, are


9 consistent with those laid out by the Persian Gulf

10 Veterans' Coordinating Board in their August, 1995,

11 "Working Plan for Research on Persian Gulf Veterans'

12 Illnesses."


13 Thank you very much for letting me present

14 this program.

15 CHAIRWOMAN LASHOF: Thank you very much,


16 Dr. Spencer. We appreciate this.

17 Let me open it now for questions from our

18 panel or staff. Do the Committee members have any

19 questions?


20 DR. TAYLOR: I just have one.

21 CHAIRWOMAN LASHOF: Yes. Go ahead.

22 DR. TAYLOR: Dr. Spencer, I wanted to ask


23 you a little bit about some of the exposures related

24 to -- we've heard earlier with depleted uranium and

25 some of the oil fires. Are you looking at any



232

1 environmental exposures related to those kinds of


2 exposures?

3 DR. SPENCER: Thank you for the question.

4 The slides are still on. This question of

5 environmental exposure assessment is obviously one of


6 the most thorny questions that we have to face.

7 Ideally we would like to be there doing real time

8 measures. If the toxicologist doesn't have that


9 available to him or her, then measuring residual

10 chemicals in the body would be the appropriate way.

11 We know of no residual chemicals that we should

12 measure.


13 Failing that, we would turn to biological

14 markers of exposure. Unfortunately, we don't have any

15 biological markers of exposure, although we, of


16 course, are working on one.

17 So, what could we do, we asked ourselves,

18 in order to try to get some hard data on exposures?

19 And we felt that the best way we could come up with


20 this would be to stratify in time the different

21 experiences of subjects who went to the Gulf, namely

22 by taking individuals who deployed exclusively for


23 Desert Storm, exclusively for Desert Shield,

24 exclusively for the clean-up period, as well as

25 combinations of those, because in this way we will at



233

1 least be able to be firm about different groups'


2 subsets of exposures. We know when people arrived in

3 the Gulf, we know when they left.

4 When we then combine that with their

5 geographical location, and we unfortunately have yet


6 to receive the DOD database but we're looking forward

7 to receiving it any day, we believe that we will then

8 be able to narrow down, spatially and temporally,


9 their experiences, which will then relate to more

10 specific environmental exposures.

11 And as my colleagues in Boston and New

12 Jersey have commented previously, we also place a high


13 degree of importance on self-reported exposures of the

14 veterans, and we will be able to fit those experiences

15 within this particular model.


16 Frankly, we do not expect to come up with

17 a single causal risk factor. We do expect to come up

18 with a hierarchical risk profile for unexplained

19 illness which will be a construct both of exposures


20 and of endogenous factors and the interactions between

21 the two.

22 DR. TAYLOR: I guess the second question


23 is the follow-up to that. What's your time line for

24 the study?

25 DR. SPENCER: The research planning period



234

1 for the epidemiology study was conducted over the


2 first year; the feasibility and pilot studies over the

3 first half of the second year; and the formal survey

4 had to await OMB approval. This finally went ahead

5 with the formal survey in December 1995 and the cases


6 and controls are now coming in.

7 We anticipate that this study will spread

8 over a three-year period. We hope to pick the brains


9 of our survey statisticians and biostatisticians with

10 regard to when we will be statistically justified to

11 analyze our preliminary data so that we can make some

12 preliminary statements on the basis of our formal


13 population-based survey.

14 I am personally impressed with how news

15 broadcasts can make very accurate predictions about


16 the outcomes of elections on the basis of a few

17 percent of sampled. I don't wish to do that, but I do

18 wish to ask my statisticians and survey consultants

19 when we will be justified in breaking open the data


20 and looking at preliminary findings.

21 CHAIRWOMAN LASHOF: Don?

22 DR. CUSTIS: You've stratified the


23 veterans' study group into three cohorts ending with

24 the cleanup phase. There are still American troops in

25 Kuwait and Saudi Arabia. Does that constitute a



235

1 cohort that's worthy of any study at all?


2 DR. SPENCER: I would say that there are

3 many cohorts which are worthy of study, and that would

4 certainly be one, perhaps with different subsets of

5 exposure. It might be of interest, for example, to


6 look at the experiences of these American service men

7 and women with respect to time during the year. We

8 don't have a very firm handle on the differential --


9 on the temporal distribution, differential temporal

10 distribution of sand flies, for example, within the

11 Gulf region as a function of climate, and that would

12 be important feed -- important information in


13 relationship to the opportunity for infestation with

14 a protozoan parasite.

15 There are additional questions that could


16 be asked of that group and of other groups,

17 individuals who were deployed only to Germany.

18 Individuals who thought that they were going to go to

19 Germany and then on to the Gulf but who never left the


20 continent of the United States.

21 Unfortunately, we do not have the funding

22 to address all of those groups, and we've narrowed our


23 efforts to those subjects who were deployed in the

24 Gulf. We did seek additional funding but were

25 unsuccessful for a comparison study between U. S. and



236

1 U. K. veterans because we believe that that's an


2 important additional cohort that we could gain

3 information from, because they had somewhat different

4 experiences in the Gulf. They -- the U. K. group

5 representing a second -- the second largest, a group


6 of subjects from the -- within the Coalition force.

7 CHAIRWOMAN LASHOF: Mark?

8 MR. BROWN: Thank you. I have two


9 questions, if you don't mind, Peter.

10 First of all, both the other environmental

11 hazard centers that we heard from made a very obvious

12 emphasis on chronic fatigue syndrome and multiple


13 chemical sensitivity, I guess because of the obvious

14 overlap between the types of symptoms that some

15 veterans are showing and those diseases. And I'm


16 wondering in your definition of case, you have some of

17 those issues, too, you have cognitive changes,

18 unexplained fatigue and some others, and I'm wondering

19 if you're -- I didn't hear you mention it, and I'm


20 wondering first of all if you're -- if you have any

21 thoughts or if you're specifically looking at chronic

22 fatigue syndrome and multiple chemical sensitivity


23 issues. That's my first question.

24 And then my second question is just

25 briefly, did I understand you to say that you have in



237

1 this assay with a mouse motor, nerve/motor/muscle


2 junction system, an in vitro system, that you can show

3 effects at the neuromuscular junction with

4 pyridostigmine bromide that shows some type of damage

5 at physiological relevant concentrations? That


6 strikes me as a fairly remarkable finding, and I'm

7 wondering, is that going to be published, I guess, is

8 my ---


9 DR. SPENCER: No, these are just

10 preliminary findings. In regard to your second, there

11 have been a number of studies conducted previously in

12 animals, looking at both single exposures to sarin and


13 soman and repeated exposures to pyridostigmine

14 bromide. These were reported over ten years ago.

15 These studies were primarily ultra-


16 structural studies I think carried out in the

17 laboratory of Dr. Edson Albuquerque in Baltimore.

18 What I said was that our findings in the

19 tissue culture system are consistent broadly with the


20 findings of both are expected with this drug and our

21 reported.

22 We have yet to do the electromicroscopy,


23 so we cannot specifically state that the ultra-

24 structural findings in these cultures are identical,

25 but we do find evidence of the spreading of



238

1 localization of the neuromuscular junction which would


2 be consistent with early denervation, but I can't tell

3 you that we have concrete proof of denervation at this

4 point. The electrophysiological changes would be

5 consistent with this, but I would say that we do not


6 view these findings as great surprise since they're

7 sitting in the literature for some time.

8 With regard to your point about multiple


9 chemical sensitivity and chronic fatigue syndrome,

10 yes, indeed, we're following this very carefully. We

11 will be looking at subjects, a subset of subjects that

12 fulfill the criteria of chronic fatigue syndrome.


13 With regard to multiple chemical

14 sensitivity, this Committee may not be aware that a

15 few weeks ago in Berlin the WHO brought together a


16 group of European and other experts to address the

17 issue of multiple chemical sensitivity. The

18 recommendations -- I'm not sure whether they're

19 recommendations -- a summary was published, and I


20 believe it may be widely available at this time.

21 The multiple chemical sensitivity syndrome

22 that was addressed there considered not only


23 sensitivity to chemicals but also to other factors

24 that people complain of, particularly in Europe; for

25 example, proximity to radiation sources, and, for



239

1 example, electromagnetic radiation, and other


2 environmental factors which greatly concern them and

3 impact their health.

4 This particular group felt that the

5 evidence that there was some chemically-triggered


6 sensitivity has yet to be collected, as outlined by my

7 colleague in the VA research team, and specifically

8 the studies that were recommended by WHO will be


9 carried out by Dr. Watermiler and his colleagues.

10 The provisional name of idiopathic

11 environmental intolerance was substituted for multiple

12 chemical sensitivity at this particular meeting.


13 Idiopathic environmental intolerance was used as a

14 descripter, not as a diagnosis, and this particular

15 international group felt that idiopathic environmental


16 intolerance could then be added to it, intolerance to

17 chemicals, intolerance to other environmental factors.

18 This descripter was used in order to set

19 up an opportunity for research, to ask as you've heard


20 before about whether psychological factors or

21 toxicological factors or both drive this particular

22 phenomenon, and the specific recommendation was to


23 carry out a double-blind crossover placebo controlled

24 study to address this question, and from that it was

25 assumed that the data would indicate whether or not



240

1 there was concrete evidence of sensitivity to


2 chemicals, justifying the term multiple chemical

3 sensitivity, and from that appropriate toxicological

4 studies could be launched and the appropriate

5 treatment could be launched.


6 If, on the other hand, psychological

7 factors were dominant, that would lead to another

8 method for diagnosis and for treatment.


9 I might underline that every member of

10 this WHO working group recognized that this was a

11 significant health problem that needed to be addressed

12 promptly.


13 CHAIRWOMAN LASHOF: Yes, Dr. Brix.

14 DR. BRIX: Dr. Enger came and gave us a

15 demonstration about two months ago. He said that at


16 about that same time in late January was the time of

17 bringing people in for the -- the first people for

18 project one and project two. And I would just like to

19 have an update from you as to approximately how many


20 people you brought in for those and what is your

21 overall goal over the next three-and-a-half years,

22 please.


23 DR. SPENCER: Well, the overall goal is to

24 draw 250 cases and 250 controls for the clinical case

25 control study, and these will be taken from the random



241

1 population-based survey of some 3,000 Northwest


2 veterans. And our goal is to examine about 20

3 subjects per month, and I do not have a precise number

4 to give you at the present time. It is measured in

5 the tens. I'd be certainly pleased to get that study


6 -- that number for you immediately after the end of

7 the meeting.

8 CHAIRWOMAN LASHOF: I have a couple of


9 questions about the pyridostigmine bromide and the

10 changes in them. There's a footnote in here about

11 bromism. Are these changes seen and would bromism

12 continue after therapy had been stopped, or is it only


13 while they are on the pyridostigmine bromide that you

14 would see this?

15 DR. SPENCER: Dr. Lashof, this is a


16 theoretical construct. It's based on the

17 consideration that pyridostigmine bromide has two

18 potential neurotoxic moieties, the pyridostigmine on

19 the one hand and the bromide ion on the other hand.


20 The bromide ion, as you know, is of interest because

21 it can cross the blood/brain barrier. It has been the

22 cause of a considerable amount of illness in prior


23 decades when bromides were very widely used.

24 Of particular interest here, we believe,

25 is that because bromide substitutes for the chloride



242

1 ion in intracellular and extracellular fluids, in


2 situations when subjects are dehydrated, and because,

3 for example, subjects in Desert Shield spent many

4 months in the desert and were at risk for dehydration,

5 we're uncertain whether they had salt tablets with


6 them to replace their chloride.

7 But theoretically, in a situation of

8 depletion of chloride, the subsequent presentation of


9 bromide from pyridostigmine bromide would

10 theoretically lead to a greatly enhanced half life for

11 the bromide ion. And this is being shown

12 experimentally in early dog studies, in fact, in the


13 early 1930s, where the half life of the bromide ion

14 changed from days, the normal half life, to months.

15 That's the half life, not the full life.


16 CHAIRWOMAN LASHOF: Right.

17 DR. SPENCER: And so, there is the

18 potential for effects to be seen both in the short

19 term and in the long term if one has subjects who are


20 chloride depleted.

21 We have particular interest in this regard

22 because the American population has switched in recent


23 years to a relatively low salt diet, and we were keen

24 to compare this group with U. K. citizens which still

25 maintain a rather high salt diet; in fact, estimates



243

1 of -- estimates have been given as to the differential


2 salt exposure. And thus we were curious about the

3 prospect that military subjects went into the Gulf

4 with potentially different salt loads and were

5 subjected to heat stress, had enormous amounts of


6 sweat within the Gulf, within the desert, perhaps were

7 not replaced with -- perhaps the chloride was not

8 replaced with salt tablets. And then on top of that


9 they were exposed to PB such that there was the

10 environment, the internal milieu upon which the

11 bromide ion could exert its toxicity.

12 I emphasize this is a theoretical


13 construct, but I would also say that if one was

14 designing an agent for a nerve gas antidote enhancer,

15 one wouldn't think of bromide as the anion that one


16 would attach to pyridostigmine from the point of view

17 of toxicological considerations. One might want to

18 choose another anion like chloride.

19 Having said that, there may be some other


20 important consideration to which I am not privy as to

21 why the bromide was chosen.

22 CHAIRWOMAN LASHOF: Thank you very much.


23 It's an interesting suggestion, hypothesis or what

24 have you. Certainly deserves further work, and I'm

25 glad you're doing that.



244

1 DR. SPENCER: Excuse me. Unfortunately we


2 are only doing this in a very limited degree. We were

3 unsuccessful in our application to conduct a formal

4 study on this question. But we do believe it is an

5 important question to be addressed, and we would


6 certainly like that opportunity in the future.

7 CHAIRWOMAN LASHOF: I'm sure you'll

8 reapply.


9 It strikes me that I think you're the only

10 group who is taking as your control people who were

11 deployed to the Gulf but at different times and

12 different exposure report. Practically all the other


13 epidemiologic studies that I think -- and staff can

14 correct me if I'm wrong -- that have been presented to

15 us have used deployed and non-deployed. And I was


16 struck that I think this is a very useful approach to

17 this difficult problem we have of trying to figure out

18 who was exposed to what, and using your case control

19 to be both drawn from those who were over there but


20 with different exposure.

21 DR. SPENCER: Thank you, Dr. Lashof. We

22 felt that this was where the veterans' interest was


23 perhaps paramount as to the question as to whether

24 there was something in the Gulf which was associated

25 between illness and health, and that's why we decided,



245

1 upon the advice of our consultants, in addition, to


2 place our activities, focus our activities.

3 CHAIRWOMAN LASHOF: Any other questions?

4 If not, we'll take a break at this point

5 and resume at 3:45 promptly. Just a ten-minute break


6 please.

7 (Whereupon, a recess was taken.)

8 CHAIRWOMAN LASHOF: I think we're going to


9 resume now. I'll ask if Nancy Hunter-Young will come

10 forward and give us a briefing at this point on

11 outreach activities at the Department of Veterans

12 Affairs. Nancy Hunter-Young from the VA National


13 Customer Feedback Center, Roxbury, Massachusetts.

14 Tell us about the feedback center.

15 MS. HUNTER-YOUNG: Well, thank you, Dr.


16 Lashof and Committee members for inviting me to come

17 and tell you about the center. My background is -- I

18 am currently the Acting Director of the center. I

19 have a background in critical care nursing and health


20 care business management and health services research

21 and development.

22 Our center is located on the campus of the


23 Brockton/West Roxbury VA Medical Center in West

24 Roxbury. Organizationally, we are a newly-created

25 decentralized program within the VHA Office of Quality



246

1 Management, and that is headed by our former Director,


2 Dr. Nancy Wilson.

3 Our center was officially funded in 1994

4 and our staff includes myself, our chief survey

5 methodologist, a research assistant, a program


6 assistant and a program specialist.

7 We receive biostatistical staff support

8 through the Office of Quality Management in


9 Washington.

10 And we provide the following services:

11 National standardized surveys of recently discharged

12 ambulatory care and long term care veteran patients.


13 We provide private sector comparison data in working

14 with a Boston-based group, the Picker Institutes. We

15 provided customized analyses of our survey data


16 nationally from requests from VA Medical Center

17 directors, network directors and special programs.

18 And we provide consultative support for VA Medical

19 Center level and network level initiatives, including


20 advice on survey content, sampling, data collection

21 and data analysis.

22 What I'd like to do this afternoon in


23 terms of telling you about the Feedback Center is

24 cover some background in terms of how the patient

25 feedback service originated, primarily the concerns



247

1 with the former satisfaction system that VA had in


2 place, go over the original pilot study that we

3 conducted, and then tell you about our current methods

4 for survey services.

5 I'd also like to talk about the


6 relationship of the customer service to the VA's

7 customer service standards and show you some brief

8 data from the 1994 national survey of recently


9 discharged veterans.

10 I've already gone over what our basic

11 services are, and then I'd like to talk a little bit

12 about my discussions with Dr. Fran Murphy, the


13 Director of the Persian Gulf program, and a plan for

14 evaluating Gulf War veterans' survey responses in our

15 in-patient and out-patient samples.


16 VA started serving veterans in 1974 with

17 a traditional hospitality satisfaction survey,

18 basically asked questions like was the staff

19 courteous, yes/no; was the room clean. Similar to


20 what you would find in a hospitality survey.

21 The Office of Quality Management took over

22 the system in 1991 and early in 1992 Dr. Nancy Wilson


23 began a fellowship at the Brockton/West Roxbury VA

24 Medical Center in health services research and

25 development and primary care. She was an internist



248

1 who had an interest in patient satisfaction and had


2 done some research in that in the private sector, and

3 she worked with Dr. Jennifer Daley who's now the

4 Director of Health Services Research and Development

5 at the West Roxbury VA to design a pilot study that


6 would measure veteran patients' reports of

7 satisfaction with their health care in the VA.

8 And ultimately the plan was that if this


9 study was successful and feasible, it would replace

10 the old patient satisfaction system.

11 The main problems with the former VA

12 patient satisfaction surveys were that the quality of


13 the methodology varied by hospital. It was conducted

14 primarily by patient representatives. There was no

15 uniform random sample of patients to survey. It was


16 a hand out survey, hand back in survey.

17 There was a common belief that the

18 questions were not true measures of quality, and the

19 results showed no variability over time.


20 The original pilot study purpose was to

21 explore the relationship between patient reports and

22 their overall ratings of the quality of their health


23 care, and the design involved, first of all, focus

24 groups of veterans and their families to ascertain

25 what veterans would report as a high quality health



249

1 care experience. And the reason why that was done, we


2 were working collaboratively with the Picker Institute

3 who conducts private-sector surveys of both medical

4 and surgical in-patients and ambulatory care patients.

5 They were using a survey instrument that


6 had been well field tested, and we wanted to use a

7 similar model. One concern, though, from our advisory

8 panel for the original pilot was that we wanted to


9 make sure that veterans had similar priorities if we

10 were going to use a private sector survey and then use

11 that as bench mark comparison data later on.

12 So, we began conducting focus groups


13 nationwide of veterans and their families to ask them

14 what they thought would exemplify a high quality

15 health care experience in the VA.


16 The random sample was 12,000 veterans for

17 the pilot discharged between May 1st and July 31st,

18 1993, from twenty VA medical centers nationally. The

19 survey instrument, as I said, was modeled after the


20 one developed and in use by the Picker Commonwealth

21 Program for patient centered care. This program was

22 established in 1987 in Boston's Beth Israel Hospital


23 and Harvard Medical School to promote an approach to

24 hospital and health services focusing on the patient's

25 needs and concerns as the patient defines them, and to



250

1 explore models of care that make the experience of


2 illness and hospitalization more humane.

3 Our center continues to work

4 collaboratively with the Picker Institute in both

5 survey design and comparative data analysis.


6 Once the focus groups were completed a

7 descriptive cross-sectional mail survey was designed

8 and implemented. When the responses were received


9 they were then merged with the VA's patient treatment

10 file which is the discharge to abstract database for

11 both in-patient and out-patient care.

12 The key results that we found from the


13 thematic analysis of the pilot were that patient mail

14 surveys are feasible in VHA. We had a seventy-percent

15 overall response rate in the pilot. Over half the


16 variation in the patients' overall satisfaction

17 ratings with the quality of their health care could be

18 explained by their reports about the priorities that

19 we were measuring in the survey, and these priorities


20 were specifically taken from the analysis of the focus

21 group with veterans and their families.

22 The third was that patients can and do


23 distinguish between priorities of quality health care,

24 and that controlling for age, health status, hospital

25 service and teaching status, there was marked



251

1 variability across -- existing between VA hospitals on


2 scores that measured their performance on the veteran-

3 defined indicators of quality health care.

4 In terms of the nationwide focus groups of

5 patients and their families that we conducted, the


6 primary purpose of this was to elicit patient

7 priorities for quality health care and then to elicit

8 patient descriptions of specific behaviors that


9 characterize each of these priorities. And those

10 behaviors were categorized, then, into ten main

11 constructs, that in the area of emotional support,

12 coordination of care, respect for patient preferences,


13 physical comfort issues, provider continuity, staff

14 courtesy, timeliness of access to care, information

15 and education, family participation and involvement in


16 their care, and transitions from in-patient to the

17 out-patient setting.

18 We then collaborated with the Picker

19 Institute researchers and a questionnaire was written


20 to measure the current performance on each priority.

21 The questions asked patients to report the frequency

22 of behaviors that characterized each priority, and


23 they asked patients to evaluate the adequacy of those

24 behaviors. There are also questions in the survey

25 that ask for overall impressions of the quality of the



252

1 care.


2 This is an example of the survey

3 questionnaire that we used for the 1994 in-patient

4 survey. It's an optically scannable format, and I have

5 a couple of questions since it's not so easy to see


6 that I've highlighted on the next slide.

7 This is an example of the wording of the

8 questions. For example, "Were you told what danger


9 signals about your illness or operation to watch out

10 for after you got home?" "Did you know who to ask

11 when you had questions about your health care?" "Did

12 someone explain the purpose of your medicines in a way


13 you could understand?"

14 The current status of our surveys

15 conducted at the National Customer Feedback Center.


16 Our first national survey after the pilot of recently

17 discharged in-patients was conducted in February of

18 1994. We mailed to 69,500 veterans nationwide. We

19 had an overall response rate of 68 percent.


20 The second national survey was just

21 completed in terms of data collection in September of

22 '95, and we have a raw response rate of 63 percent,


23 and that was mailed out to a sample of 68,000

24 veterans.

25 Ambulatory care, we did a nationwide pilot



253

1 for that survey in January to 7,400 patients


2 nationwide, and the first national survey was

3 conducted in August to 41,000 ambulatory care patients

4 at 157 VA medical centers representing 276 ambulatory

5 clinics. We had a very good response rate of 76


6 percent.

7 And long term care, we're now designing

8 the survey. We've just begun that design. The plan


9 time line is for a pilot in the third quarter of this

10 fiscal year, and then the national roll-out in the

11 fourth quarter.

12 In terms of our methods and data


13 collection, we mail the questionnaires from the

14 National Customer Feedback Center and they're sent

15 back directly to us. We use a modification of the


16 total design method which was developed by Don Dilman

17 at the U. S. Census Bureau in terms of receiving high

18 response rates.

19 A pre-notification letter telling the


20 patient that they've been randomly sampled is sent

21 out. Seven days later they receive the first mailing

22 which includes a cover letter explaining the purpose


23 of the survey and the questionnaire. A week later

24 they receive a reminder/thank you/follow-up postcard

25 which is sent to everyone in the sample, and then two



254

1 weeks later we send a second mailing to the non-


2 responders.

3 The questionnaires when received at the

4 center are optically scanned into a data set. The

5 responses are then merged with the patient treatment


6 file for both responders and non-responders. We use

7 that to obtain additional demographic data.

8 This gives you an idea in this table of


9 the overall response rates for patients in the 1994

10 survey of recently discharged in-patients, that should

11 say on the slide. As you can see, we experienced very

12 good overall response rates from veterans, 68 percent


13 overall, and a range of 48 percent in psychiatry. The

14 unit of analysis in the in-patient survey is at the

15 department level, in-patient department level. 48


16 percent at a low in psychiatry to 78 percent for

17 surgical patients.

18 When we report the results, the content of

19 the reports are the specific veteran-defined indicator


20 and how the hospital performs, and that's emphasized

21 in the report. The relative importance of those

22 indicators to the overall quality of care rating is


23 given and we provide benchmark comparisons using risk-

24 adjusted performance.

25 The recipients of the report in central



255

1 office are the Undersecretary of Health for the


2 Department of Veteran Affairs, Dr. Kizer, and the

3 Office of Quality Management. We provide reports to

4 the 22 VA network directors, the VA medical center

5 directors and service chiefs, and then they distribute


6 the reports to quality management coordinators,

7 patient representatives and the TQI councils at the

8 hospitals.


9 In response to the Presidential executive

10 order on September 9th, 1994, VA was directed to

11 develop and implement a customer service plan, and the

12 specific areas of the order stated that VA should


13 identify their customers, survey their customers to

14 determine the kind and quality of services they want

15 and their level of satisfaction with existing


16 services, post those service standards and measure

17 results against them. Benchmark performance should be

18 provided against the best in business.

19 They should provide their customers with


20 choices in both the sources of service and the means

21 of delivery, make the information services and

22 complaint systems easily accessible, and then provide


23 means to address customer complaints.

24 The process of establishing those customer

25 service standards involved a multi-disciplinary field



256

1 and central office work group in which we at the


2 center were integrally involved. VHA central office

3 policy boards and various senior officials in central

4 office as well as personnel from the National

5 Performance Review met. It was decided during those


6 meetings that the ten indicators which veterans had

7 defined as a priority in determining a high quality

8 health care experience would be operationalized into


9 the customer service standards for VHA.

10 And these are the same standards that I --

11 indicators that I showed you earlier. They've become

12 the operationalized standards.


13 Here's an example of one of the standards,

14 emotional support, and it's the way that it's actually

15 stated when it's written as the standard. "We will


16 provide support to meet your emotional needs." The

17 questions that are underneath it are the in-patient

18 component questions that load into that particular

19 standard for scoring the customer service standard,


20 and there are four of them in the in-patient survey.

21 In terms of how scores are reported, this

22 table shows you how we calculate the problem scores.


23 A problem score was computed for each VA medical

24 center's customer service standard, and it was done by

25 first assigning a score of zero to each question that



257

1 was answered in a favorable manner and a score of one


2 to each question that was answered in an unfavorable

3 direction.

4 After coding all the questions in that

5 fashion, the questions related to each customer


6 service standard were averaged together to obtain a

7 problem score for each patient for that service

8 standard.


9 You can see on the table that the

10 computation of the problem scores for hypothetical

11 three patients in a sample. Patient 001 answered only

12 one question out of four in a manner indicating a


13 problem experienced resulting in a problem score of

14 .25. Subject three earned a problem score of .75 for

15 this customer service standard because his responses


16 indicated negative experiences on three out of four of

17 the component questions. And as you can see, the

18 trend is that the higher problem scores indicate less

19 favorable patient perceptions.


20 The problem score then for each VA medical

21 center on any given customer service standard was

22 simply the average of the problem scores for the


23 individual patients discharged from that hospital.

24 For example, if the three patients listed in the table

25 were the entire sample for a particular VA medical



258

1 center, the problem score for that VA on the patient


2 education customer service standard would be .25 plus

3 .75 plus .10 -- I'm sorry -- plus one, divided by

4 three, so the problem score on education would be .67.

5 This just shows you an example of all the


6 customer service standards for the in-patient 1994

7 survey data for medicine patients adjusted for age and

8 health status among four different VA medical centers,


9 A, B, C and D.

10 Earlier I had mentioned that one of the

11 problems with the old patient satisfaction system in

12 VA was the lack of variability of results, both within


13 VA medical centers and across VA's nationwide. This

14 slide illustrates customer service standard scores for

15 emotional support for medicine patients in the 1994


16 study across the VA medical centers. And as you can

17 see, there is almost a three-fold difference between -

18 - in problem scores in the area of emotional support

19 between the lowest and the highest scores at VA


20 medical centers, so we were able to demonstrate

21 considerable variability across VA medical centers.

22 Variability among scores on the customer


23 service centers within a VA medical center are also

24 seen. This bar graph shows for the seven customer

25 service standards in the 1994 survey for medicine



259

1 patients the ranked order of scores. Remember, lower


2 scores mean that you have fewer problems.

3 We routinely provide comparative data when

4 reporting results. Comparisons are provided to the VA

5 national average and to the non-VA Picker private-


6 sector data. This is taken directly from a report.

7 It's a little bit hard to see. But it's a benchmark

8 chart for medicine patients in the 1994 survey, and


9 the customer service standards are across the bottom

10 and the problem score is on the Y axis. And it shows

11 confidence intervals for this VA hospital's medicine

12 patients in terms of their score, 95 percent


13 confidence interval, and then it shows the Picker data

14 and the national average for medicine patients so that

15 they can look to see how they compare to those


16 populations.

17 Several months ago I was contacted by Dr.

18 Fran Murphy, the Director of the Persian Gulf Program

19 in Central Office, and she was interested in finding


20 out if we had a variable in our data set that showed

21 period of service for the respondents and non-

22 respondents to the survey. We do collect period of


23 service from the patient treatment file when we do the

24 merger, and we were able to identify Gulf War-era

25 veterans in our sample.



260

1 We then talked about how we could go about


2 looking to see whether those veterans had been

3 deployed or not. We are in the process right now --

4 we have identified the Gulf War veterans in our 1995

5 databases, both in-patient and ambulatory care. We


6 are working with a biostatistician from Dr. Murphy's

7 program to match our sampling frame against the

8 Austin, Texas, Gulf War veteran roster of those


9 veterans who were deployed between 8/90 and 6/91, and

10 we were able to match those yesterday, so we're able

11 to find out at this point who was deployed.

12 The standard analysis then, the plan is


13 that the standard analysis will be run for those

14 veterans, that subset of veterans, to determine the

15 customer service standard scores, percentages of


16 problems that were reported, and the overall quality

17 ratings that those veterans report for both

18 respondents and non-respondents.

19 The report results then will be to Dr.


20 Murphy in the Persian Gulf program.

21 We were able to find for our 1995 recently

22 discharged in-patients we were able to match 702


23 deployed veterans in the sample against the Austin

24 database, and for the out-patient database we were

25 able to match 713 deployed veterans who were matched



261

1 in the sample.


2 In terms of other variables in that data

3 set, we need to have further discussion with Dr.

4 Murphy about the variables that exist in the roster

5 data set in terms of whether they would be of interest


6 in an analysis of that group.

7 That's it.

8 CHAIRWOMAN LASHOF: Thank you very much.


9 MS. HUNTER-YOUNG: You're welcome.

10 CHAIRWOMAN LASHOF: I think that's very

11 helpful.

12 Are there questions that the panel has?


13 DR. TAYLOR: All of this was from in-

14 patient surveys.

15 MS. HUNTER-YOUNG: What I showed you was


16 from

17 in-patient.

18 DR. TAYLOR: Just beginning with looking

19 at those who were deployed and who received ambulatory


20 care; is that correct?

21 MS. HUNTER-YOUNG: We're going to match it

22 against both the data sets, both ambulatory care and


23 in-patient care.

24 DR. TAYLOR: So, we don't have any scores

25 yet.



262

1 MS. HUNTER-YOUNG: No. No. We just


2 started. We just got the matches yesterday, so the

3 next step would be -- it will be fairly easy to

4 determine the scores because the analysis is fairly --

5 is complete for in-patient and out-patient.


6 MAJOR KNOX: Sounds like you have a pretty

7 sound survey. What's the plan for the interventions

8 based on the surveys? Have you thought that far?


9 MS. HUNTER-YOUNG: Well, the hospitals,

10 once they receive the reports, there's a lot of

11 activity going on right now in terms of initiatives.

12 We get called in for a consultation in strategic


13 planning as to what to do with the data now, or data

14 interpretation. Some of the hospitals are focusing on

15 -- have sent people in quality management or the TQI


16 council for focus group training, and they are

17 conducting their own small focus groups with veterans

18 at their facility to work on a customer standard --

19 service standard that they did particularly poor in,


20 as a way of including the veterans' opinions in what

21 would be a good initiative to develop to improve in

22 this particular area.


23 CHAIRWOMAN LASHOF: Any other questions?

24 MS. NISHIMI: When do you anticipate the

25 entire package to be complete and then also the



263

1 subset?


2 MS. HUNTER-YOUNG: For which population?

3 In-patient?

4 MS. NISHIMI: Both.

5 MS. HUNTER-YOUNG: Okay. Well, we have


6 the out-patient data. That's already been distributed

7 to the field. And last year's in-patient report.

8 We're doing the analysis for this year's in-patient


9 report currently, and that should be out at the end of

10 May, distributed to the field. So, I'm hoping that we

11 can work on the analysis for -- the sub-analysis for

12 Gulf War deployed veterans within the next month in


13 both of those data sets. We can do it pretty quickly

14 in the out-patient set because that analysis is

15 complete, but in-patient we are still finishing up the


16 last bits of that analysis.

17 DR. TAYLOR: For the in-patient data that

18 you already collected, what was the average stay in

19 the hospital? Do you have any way of knowing that?


20 MS. HUNTER-YOUNG: For 1994, I don't have

21 that off the top of my head. I can -- we do collect

22 length-of-stay variable, and I can take a look at that


23 if you would like that and give you that information.

24 MAJOR KNOX: Nancy, the other thing that

25 you might think about doing is publishing some of your



264

1 results in The Registry, a quarterly magazine that


2 Persian Gulf veterans get, so that they can get some

3 feedback as well as to what you're doing to following

4 up on complaints.

5 MS. HUNTER-YOUNG: Yes. Okay.


6 MR. McDANIEL: So, your office is involved

7 with helping the medical centers interpret the data.

8 MS. HUNTER-YOUNG: Yes. Yes, we are. We


9 receive a lot of follow-up calls after the results go

10 out for additional analyses, cutting the data by

11 primary diagnosis or by gender or just interpretation

12 of what the scores mean and how do the benchmark


13 scores compare and how are they adjusted. So, we do

14 a lot of work with VA medical centers.

15 CHAIRWOMAN LASHOF: What work do you do


16 with them on -- after analyzing the data of corrective

17 action that needs to be taken, if any?

18 MS. HUNTER-YOUNG: Well, we get involved

19 in consultation with them if they request some


20 assistance in follow-up survey design or planning.

21 We've done some of that. That has been the choice of

22 certain directors, instead of going the focus group


23 route they have decided to do a small follow-up

24 survey.

25 Some of the hospitals recently in the past



265

1 two months have had an interest in replicating our


2 exact methodology on a more frequent basis. We

3 currently do these surveys annually and they are

4 interested in maybe doing the exact -- using the exact

5 same methodology and doing it biannually using our


6 national survey once a year and then conducting it

7 locally at their facility.

8 So, we've gotten involved recently in a


9 lot of requests for that to measure interventions that

10 they're planning to put in place.

11 CHAIRWOMAN LASHOF: Any other questions?

12 If not, thank you very much. It was very


13 interesting. We appreciate the time.

14 MS. HUNTER-YOUNG: Okay. Thank you.

15 CHAIRWOMAN LASHOF: Our next item on our


16 agenda, then, is for further discussion about the next

17 steps that are planned and any additional follow-up

18 that any of the committee feels are indicated from any

19 of the things we've heard today, where we go from


20 here.

21 Maybe first, Robyn, you could review what

22 is planned for us so far, and then people can say what


23 more they want.

24 MS. NISHIMI: Sure. What the staff is

25 interested in knowing primarily from this section is



266

1 what follow-up you might want us to pursue on the


2 topics that we heard here.

3 To keep it in context, the upcoming

4 events, on April 16th there'll be a panel meeting in

5 Atlanta, Georgia, at the Atlanta Radisson Hotel. The


6 focus of that particular meeting will be chemical and

7 biological weapons.

8 On May 1st and 2nd there will be a full


9 committee hearing in Washington, D.C., at the Omni

10 Shoreham, and the primary focus, although not the

11 exclusive focus, again, will be chemical and

12 biological weapons.


13 And then on July 8th and 9th there will be

14 a full committee meeting in Chicago, Illinois, and at

15 the Ambassador West Hotel. And at that meeting staff


16 hopes to be able to brief the committee on its work in

17 evaluating the various risk factors. So we'll

18 dovetail somewhat with today's meeting.

19 CHAIRWOMAN LASHOF: Okay. Any suggestions


20 people have for staff about specific things that they

21 want them to be sure to follow up on, look into, be

22 sure we cover either at the panel meeting or at the


23 next two full meetings?

24 MAJOR KNOX: Joyce, I think just following

25 up on the presentation that she just now made, we have



267

1 a lot of complaints from veterans that give testimony


2 about certain physicians and certain VA's. And is

3 there any way we're tracking that regarding their

4 testimony such that staff could provide her survey

5 team with those names and facilities?


6 MS. NISHIMI: I hadn't thought about

7 providing Nancy Hunter-Young with the facilities about

8 which we have heard testimony, but that's certainly


9 something we can explore with the VA.

10 CHAIRWOMAN LASHOF: All right. That's a

11 good suggestion that we at least find who is the most

12 appropriate, if it's not Nancy, that we make sure that


13 the VA gets that feedback ---

14 MAJOR KNOX: And the good feedback as

15 well.


16 CHAIRWOMAN LASHOF: --- and get some

17 follow-up back and that we get feedback on where that

18 stands.

19 MS. NISHIMI: On an informal basis,


20 obviously. Many VA employees have attended some of

21 the regional panel meetings, and so they receive the

22 feedback as it comes in to you. On a formal basis, we


23 don't transmit it per se. But that's how we've been

24 handling the public comment that we receive.

25 CHAIRWOMAN LASHOF: Any other issues that



268

1 -- well, I think staff have been doing an excellent


2 job of getting us good background material and setting

3 up these meetings and making sure they do cover the

4 major things that we want to cover.

5 Could you tell us a little more about the


6 plans for the panel meeting on chemical and biological

7 warfare for April?

8 MS. NISHIMI: The chemical -- the panel


9 meeting in April will be obviously to receive public

10 comment from the Atlanta, Georgia, area and surrounds,

11 and we'll spend a fair amount of time on that. And

12 then the principal focus of this panel meeting will be


13 to look at the government's investigations ongoing

14 into chemical and biological warfare incidents,

15 reported incidents, and as well as non-governmental


16 investigations into potential exposures as reported by

17 a couple of private sector individuals who have been

18 following the topic.

19 The full committee meeting on May 1st and


20 2nd will report on that panel meeting, and then we'll

21 continue the exploration with health effects, health

22 risks of possible low-level exposure, et cetera, and


23 there will be several panels that encompass those

24 topics related to CBW.

25 CHAIRWOMAN LASHOF: What further work are



269

1 we planning to do around the depleted uranium report?


2 MS. NISHIMI: I anticipate that that will

3 be part of the July meeting when the committee

4 evaluates the potential risk factors of service in the

5 Gulf War.


6 CHAIRWOMAN LASHOF: Okay. Any other? If

7 not, I guess I can turn it over to you, Jonathan, to

8 close the meeting.


9 MR. FOSTER: The meeting is now concluded.

10 (Whereupon, the meeting was concluded at

11 4 :24 p.m.)

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