Report on the Research Planning Conference

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Dear members, friends and those interested in work of NCCI: Enclosed, in
2 parts, is my report as a representative of NCCI to the Atlanta meeting
last month. Alice Osherman

Alice Osherman.  ( Representing NCCI)
Title: The Health Impact of Chemical Exposures During the Gulf War: A
Research Planning Conference.

First some general comments: My understanding was the purpose of the
conference was for looking at proposals/topics for five year research
projects.  I have not attended a conference before where there were so
many individuals well known to the MCS community. The hard work that
went on during the 2  days was impressive, at least to me. Many
excellent suggestions were made, but of course it remains to be seen
what actually will come to fruition. I did choose to wear both my mask
and my small sign stating why I wear a mask. One of the vets said that
gave him the courage to use his mask, too. For those of you who had seen
the agenda in advance, excuse the duplication.

Sunday, Day 1:This conference opened with a general welcome from Richard
Jackson, MD, MPH, Director, National Center for environmental Health,
CDC; Ruth Kirschstein, MD, Deputy Director, NIH; and Capt. Peter
Mazzella, Director of Military Liaison and Veteran Affairs, Office of
Public Health and Science, Department of Health and Human Services.

Next, were impassioned remarks from Rep. Bernard Sanders of Vermont,
the champion of rights for the vets, stating it was more than time for
some real accomplishments. He was impressive!

Session one covered Background: Gulf War Chemical Exposures and their
Health Impact, with the keynote address- The Gulf War Experience:
Current Findings and Future Directions by G. Marie Swanson, Ph.D., MPH ,
Professor of Family Practice;  Director, Cancer Center, Michigan State
University. Then a segment moderated by Major General, retired Donald
Edwards, Coordinator of Special Projects for Congressman Bernard Sanders
included a panel of vets talking about their experiences, both during
the war and since then. Session 2 was on Possible Health Outcomes of Low
Level Chemical Exposures: What We Know from the Civilian Literature, and
included speakers from both sides of the issue-those who feel it is
"real' and those who go with  "it's all in your head".
Session 3 was Multiple Chemical Sensitivities (MCS): Research and
Clinical Findings Among Gulf War Vets and Civilian Populations,
Moderated by Claudia Miller with reports on current research by Iris
Bell, MD; Donald Black, MD; Daniel Clauw, MD; Nancy Fiedler, Ph.D.; and
Susan Proctor, Dsc. In the panel discussion on MCS in Civilian
Populations  William Meggs was one of the panelist. Then, in a panel
discussion segment on MCS: The Experience of Patients and Physicians, we
heard from Mary Lamielle, Dr. William Rea, Cynthia Wilson, and Albert
Donnay (for Dr Grace Ziem.) among others.

After a break, we each went into a Workgroup Panel session of our
choice. Topics were 1. Chemical Exposures and Illnesses among Gulf War
Vets: Pathophysiology, Etiology, and Mechanisms of Action; 2.
Assessment/Diagnosis of Illnesses Associated with Chemical Exposures, 3.
Treatment of Gulf War Vets, and 4. Prevention. The topic for that
session was review of major research issues.
I chose the prevention segment, where over the next few days we  met
four times to develop our suggestions. These were then to be presented
to the entire body at the final session. Each of the workgroups was
comprised of 11 knowledgeable figures from a variety of organizations
and disciplines, from both this country and outside. Those not appointed
members were the participants from the audience who had a limited amount
of time to add suggestions or comments. If the panelists agreed, those
suggestions were added to the report. Then, after dinner, the vets had
an opportunity to voice their concerns to the workgroup Chairs. As a
result,  in the final morning's session, one of the Chairs said that
experience had opened his eyes and changed his mind and he was now
understanding what the vets were going through!

Monday, Day 2 began with a session on Chemical Exposures: Possible
Mechanisms of Action. One of the presenters in this segment, Mohamed
Abou-Donia discussed the synergistic effects of chemical combinations.
Later when we spoke to each other, he asked if I would like to be in his
research project, which only involves giving one vial of blood. I
agreed, but did not think to ask if he wants more volunteers. Then he,
as well as a professor of molecular biology from Jerusalem, a professor
from a Smell and Taste Center, and Claudia Miller led a panel discussion
after each had made a presentation. We then broke into our respective
workgroups again, where the panelists reviewed the work so far and then
took more comments, often changing them to better fit the format. While
the "audience" in the groups tried to add comments, again limited
opportunities were made available, at least in the Prevention group.
However, one good suggestion that was accepted came from a vet, that was
since it had taken five minutes to get into the two pieces, anti
chemical warfare suit with many zippers, perhaps research on having
easier to assemble suits would be worthwhile!

After lunch, the next session was Studying the Health Impact of Chemical
Exposures during the Gulf War: Methodological Considerations. The
moderator was Dr. Steven Thacker, Director of the Epidemiology Program
office, CDC, with a section on current status of Gulf War Exposure Data
from the US Army Center for Health Promotion and Preventive Medicine by
Jack Heller, Ph.D., senior scientist. Next the panel discussion covered
Research Strategies, which I found too complex to understand. After a
break, we again went into our workgroups. This time the topic was
Opportunity for Public Input Regarding Research Recommendations.

At this session, finalizations of research recommendations were
discussed. Again, only a few comments from the audience were accepted.
Some of those from the audience that did make it into the final version
included one from another vet that " low level chemical exposures"
should be defined. Since one of the suggestions was safer substitutions,
I suggested a need to research safer items such as shots and
medications, with a study to look at synergistic effects. It was changed
to interactions, and then accepted. I had asked to add that the
manufacturers of these items should not be the ones to test for
verification of safety, but that part was rejected. Other suggestions
from the panel included risk communication, health education, medicine
monitoring, and better record keeping.

Day 3, We each went back one more time to see the completed final
version of the suggestions in each of our groups and then went back to
the auditorium. The reading of most reports went too fast to be able to
take good notes. 
However, I was pleased to hear that the treatment group had a suggestion
that non-pharmiceuticals also be tried. One of the groups asked that all
related governmental records be made public, and that the various
agencies start working together cooperatively. A final report will be
sent to all of the participants and will be shared when it arrives. 

In addition,  papers on a variety of topics were available outside the
auditorium. One, entitled  "1999 Atlantic Consensus on Multiple Chemical
Sensitivity," authored, I believe by Albert Donnay, was signed by 19
prominent clinicians, researchers, and doctors, including Larry Plumlee.
Perhaps we finally will have a definition of MCS from this which
hopefully will be accepted by the powers that be.

I welcomed the opportunity to attend, to talk about NCCI and to learn
what others are doing.
May something beneficial to all of us ultimately be the outcome of this


PS. I just received a copy of the summary of recommendations at this
conference, but will send them separately as Part 2.