Fw: Update on Oct 4 weekend reunion

The VA RAC will meet on October 28-29. The meeting will focus on the three topics that the Committee has accorded the highest priority: 1) treatments, 2) neurological mechanisms including the effects of AChE inhibitors, and 3) vaccines.

I need to hear from Gulf War Veterans who have sought treatment from Scientist or Doctors working on GWI or one of the priority areas listed above. Please send contact information to me or any other member of the VA RAC. (Example - M Nass @ mnass@netquarters.net for anthrax vaccine issues)

Solicit their thoughts: 1) updating their own work in these areas; 2) identifying research by others of which we should be aware; 3) suggesting promising topics for future research; 4) suggesting names of other people to contact; 5) any ideas on treatments; etc.

Please provide initial information by October 12, so the committee may contact them or read their material

Minuets from the last VA RAC will be available for public in a week or so, below are the public comments and suggestions to the committee

Public Comment Period:

Ms. Denise Nichols:

Suggested expansion of Alert System as pointed out by the CDC

Pointed out that Dr. Bill Baumglader recommended deployed GW veterans to stay out of sunlight due to risk of seizures, heart incidences, etc.
Suggested that original registry tests be updated and VA mandated to follow revised guideline
Recommended those firefighters and police who worked the World Trade Center, who are also GW veterans, should be aggressively contacted and monitored due to additional exposure of environmental hazards
Suggested that all VA policies and directives concerning GW be forwarded to this committee for review
Her personal test results have come back – she believes study on usage of vitamins could be useful
Recommended review of Steven Johnson Syndrome
Wants to see autopsy data aggressively pursued as well as the preservation of tissue samples

Ms. Venus Val :

Suggested a feedback tool, survey or other means of gathering information from GW veterans be immediately developed
Make places in VA’s libraries available for veterans to give their feedback via computer
Send letter to VSO’s, not just the top five, and ask them to post a notice to draw veteran feedback
There are veterans who would be glad to assist the committee in getting a website up and running
Wants to ensure GW tissues, as a result of autopsies, are being catalogued for researchers
Noted a problem with Red Cross turning away Gulf War veterans who wish to donate blood
Requests a centralized database with GW information to be put in place that is accessible to the public such as the website
Request the committee to review the 1994 Regal Report which she will make available to the committee. The report is comprised of biological warfare studies
Can committee members accept outside help

Vietnam Veterans Association comments:

Suggest interim reports are provided immediately to Presidential Task Force (also found at wwww.presidentshealthcare.org, Attn: Dr. Paul Tibbets)
Recommended the committee to ask VA for statistics of GW veterans unique visits
Wanted committee to recommend to the Secretary to work with DoD to ban from its arsenal the use of ACHE/PBs

Mr. Steve Robinson:

Mr. Robinson discussed the articles and studies he reviewed and made the following comments:

Brought up concerns of unavailable reports that DoD may have and expressed displeasure of existing reports (e.g. Anthrax safety study) that did not take into account the effect on GW veterans

Brought up Bronze Anvil, which was explained to be a public relations (PR) strategy for the GW and suggested many feel the PR strategy is being used to downplay GW illnesses

Review of DoD report-53 showed low level exposure to the nerve agent sarin may have long- term health effects

Wants one-site repository of GW information for federally and non-federally funded research

Stated the United States detection capability (of chemical/biological exposure) is no better now than back in 1991

Noted that the Presidential Special Oversight Board recommended a stoppage of research due to uncertainty of whether Iraq used biological weapons

Claims public, or committee for that matter, has not yet had a full accounting of incidents of exposures (in the GW arena) even though information may be available

Wanted to know if committee can obtain a detail of all engagements (detonations of munitions) – especially those that have not been modeled (so that they may have a chance to be modeled)

There was a discussion headed by Dr. Haley of pushing for the exposure of those responsible for misinformation and/or withholding of information. Mr. Binns pointed out the charge of the committee did not include this purpose.