Leadership Change in the House Veterans Affairs Committee is now tied directly to the Administration and is redefining your entitlements and the structure of how the VA serves veterans.

The disability commission is tied to number 1, they will write the report congress uses to under cut established benefits and make it harder for new veterans to obtain services.

The OIG Report on Variance in Disability claims is about to review 10 years of PTSD claims. This is especially important because many good natured VA Docs gave the diagnosis of PTSD rather than try and prove FMS, CFS, MCS or unexplained illnesses. This review will directly impact Gulf Era veterans claims already adjudicated.
The rewriting of Title 38 has begun - people with Gulf War Illnesses, ALS and MS diognosis beware.

If you are a GW group and want to jointly work on these issues then reach out to others. The NGWRC cant make every meeting at every event. Perhaps we can split these responsibilities up between groups.

878193.002 USAF IRIS Secret Document
CENTCOM MEDICAL SURVELILLANCE,
16-22 DECEMBER 1990
SURVEY OF 69,875 PERSONNEL PARTICIPATING
IN DESERT SHIELD.
DISEASE CASE RATES REPORTED.
FORWARDED TO CENTCOM 30 OCT 1996

This document has been a major sore point with Deployment Health Support Directorate.
They refuse to make it available, as niether does CENTCOM or NARA. Its been offered to the RAC - IOM - and other medical sources as a possible medical lead.

FOIA's have been non-responsive.

If its medically relevant, and it offers disease case reports for 1990 - why isnt it declassified and available for researchers to review.

Mike Kilpatrick told me at the IOM Infectious Disease meeting he would look into why his staff have stalled on this.

The Armed Forces Institute of Pathology has
a collection of tissue samples derived from Gulf War veterans since 1990. Physical organ samples from VA hospitals have been sent here by the thousands. Blood samples are in the millions, most from the HIV repository. Mike Kilpatrick told me of it at a NSO meeting at the Pentagon in 2000.

This has been addresses over and over to all available sources since 2001. At this time the RAC is supposed to go over it for a possible review.

Problem is the AFIP is slated for closing. Chair Florabell Mullick has told me that all that is needed is for a researcher to put in the request. Then offer to pay for the catalog.

So we should ask Rep. Shays committee to include a discretionary fund to the AFIP for the catalog of Gulf War veteran tissue samples. So that researchers have an idea what to request. No one else to include DHSD has taken up the offer to fund the catalog, and time is running out before the doors close on the AFIP committee that could do this. Then it becomes a DOD custody issue when the repository is moved to a military base.

WRIISC study clinic transportation fund

The WRIISC clinic if funded for local transportation within a 50 mile radius of the Washington DC clinic. So locally they have seen close to 500 patients.

On a National Level, the clinic has seen 62 people in three years due to state VAMC directors declining transportation cost of sending veterans to East Orange or Washington DC.

Ive discussed this at length with Helen Malaskiewicz ( Senior Environmental Health Coordinator ), and she is powerless to do anything about the VAMC's directors on this.
She is the final approval authority for a patient bound to WRIISC clinic.

A VA special transportation fund should be established so that veterans can travel from the west coast, central Rockies, or anywhere around America to the WRIISC for a comprehensive workup. So that VAMC medical facilities can no longer discourage WRIISC visits based on travel cost.

Public Law 105-368 Amendment

PL 105-368 was designed to foster a effort to bring Gulf War Research forward. It set in place the IOM medical reviews, the Research Advisory Committee, and the War Related Illness and Injury Study Clinic.

But, implementation was delayed by two years. Afterwards the independent research facility became a DOD regulated clinic with WRAMC over shadowing it. ( WRIISC )

IOM reviews became strictly literature reviews of Peer Reviewed materials only. Which lead to conflicting or indecisive reports that the media butchered.

The RAC's structure lead to a hands off approach that is not able to do much but offer suggestions.

At every turn these programs have been bound by the narrow definition of the watered down language of PL 105-368. So much so that IOM, and others have cited there hands are tied by this law.

Also, VA has shifted away from undiagnosed illnesses. They will give a veterans a diagnosis even if its a wrong one, to avoid the Title 38 language of Undiagnosed Illnesses compensation.

So as DOD / VA shifted from Gulf War Illness to Environmental Illness, PL 105-368 did no grow with the changes of TRICARE / Consolidated Health Program / Force Health protection programs.

Leishmaniasis testing

VA Gulf War Registry exams are structured so that they are in 3 phases.

Phase I is a breif visual observation review.
Phase II is a little more comprehensive, based on what the patient volunteers.
Phase III becomes intensive, with a possible trip to the WRIISC clinic.

Many troops returning from OIF are coming back with Leishmaniasis. Skin test, and blood test are very unreliable as the maturation of the parasite can lay dormant for upto 3 years.

Allan Magill of Walter Reed Army Hospital said at the May 26th IOM Infectious disease meeting that this disease is hard to find until its swarming in the body at 10 to the 15 power. The it can be cultured, usually by splene or bone marrow.

I suggest that Phase I exams include blood draw for Leishmaniasis that is sent to Walter Reed Infectious Disease lab, AFIP Leishmaniasis registry, and a independent parasite lab for verification.

Gulf War Registry Exams

Phase II and Phase III medical exams can be forwarded to the War Related Illness and Injury Study Clinic if the examining physician elects to.

At the WRIISC clinic they will be setting up a new PET 3.0 scanner for the Washington DC VAMC.

For research purposes, the WRIISC should do cranial MRI's, MRI non-invasive Angiograms,
and a PET if the MRI should turn up anything.

Then from a year to 3 years later, the WRIISC
do a follow up MRI series on that veteran.

At the moment VHA handbook 1303.2 has a loophole that allows WRIISC visits under Gulf War Registry exams.

I think this concept needs support, and solicitation to VAMC Environmental Clinicians
so that they take advantage of it.

I submit this proposal for the councils attention.

Central US WRIISC clinic

The East Coast WRIISC clinic is difficult for veterans to get transportation to. Often veterans give up contacting Helen Malaskiewicz given this problem.

Another solution to the transportation issue is a centrally located WRIISC clinic like
in the Houston VAMC that housed the former Gulf War Referral Clinic. The original Gulf War Registry Coordinator is still there, and he was the one person out of the original team that should have stayed.

With the VAMC already having previous experience with this program, and having the space to run it. Very little cost would be involved in the start up.

Clostridial flora biopsies

Over the years the issue of intestinal bacteria of Gulf War vets have been glossed over. Vets with IBS, Diarrhea, and similar disorders are not thoroughly examined.

A possible cause of Gulf War GI problems maybe the indigenous bacterial flora of Iraq. A more severe strain of clostridial bacteria than in America.

Quote:
C. difficile-associated disease occurs when the normal intestinal flora is altered, allowing C. difficile to flourish in the intestinal tract and produce a toxin that causes a watery diarrhea. Repeated enemas, prolonged nasogastric tube insertion and gastrointestinal tract surgery increase a person's risk of developing the disease. The overuse of antibiotics, especially penicillin (ampicillin), clindamycin and cephalosporins may also alter the normal intestinal flora and increase the risk of developing C. difficile diarrhea.

Clostridium difficile toxin is very unstable. The toxin degrades at room temperature and may be undetectable within 2 hours after collection of a stool specimen. False-negative results occur when specimens are not promptly tested or kept refrigerated until testing can be done.

VA Gulf War registry exams, WRIISC exams, should try to do more detailed analysis of the intestinal flora. C. Difficile is just one example of many Clostridial strains that might be out of balance in Gulf War veterans.

Here's an outline of all the topics discussed in this thread so far. Please feel free to copy the outline and edit it as you think needs changing so there's little to no misunderstanding as to what needs attention.

Also, a plan of action needs to be implemented for these issues.

Items needing group action:

1. We need to write the OIG (Office of Inspector General)

a. to support and include MS/ALS veterans in the criteria used in the healthcare protocol and benefits for Gulf War Illnesses.
b. to make sure the review of PTSD claims does not punish those previously diagnosed with PTSD that weren't properly evaluated.

2. We need a way to share the load of attending meetings.

a. a calendar of events needs to be posted well in advance
b. we need volunteers to attend and funding for their expenses

3. VA Environmental Agents

a. needs wider disemination of Gulf War criteria in health care protocol.
b. more public points of contact (POC) within every VA facility and all VA staff.
c. VA Gulf War registry exams, WRIISC exams, should try to do more detailed analysis of the intestinal flora. (C. Difficile)

4. VA Research Advisory Committee (RAC)

a. needs to address the treatment needs of Gulf War Illnesses

5. Institute of Medicine (IOM)

a. Gulf War Health Studies
b. physiologic, psychologic and psycholsocial effects of deployment-related stress
c. Infectious diseases project
d. deployment illness

6. Offices that we need to respond to

a. Veterans Disability Benefit Commission
b. Deployment Health Support Directorate (OSAGWI)
c. other offices

7. Pressure on Deployment Health Support Directorate to declassify disease case reports for 1990 for research review

a. Find interested researcher to request catalog of Gulf War veteran tissue samples
b. request Rep Shays committee to include a discretionary fund to the AFIP for the catalog

8. Push for wider geographic range of transportation for WRIISC clinics to evaluate GW veterans.

9. Public Law 105-368 Amendment (http://www7.nationalacademies.org/ocga/laws/PL105_368.asp)

a. Push for IOM peer reviews to include findings from GW research, rather than peer-reviews that have no connections to latest findings in GW exposures.

10. Leishmaniasis Testing

a. testing to be accomplished over and beyond a 3 year period due to dormacey of disease.
b. Phase I exams include blood draw for Leishmaniasis that is sent to Walter Reed Infectious Disease lab, AFIP Leishmaniasis registry, and a independent parasite lab for verification

11. Gulf War Registry Exams

a. Phase II and Phase III medical exams can be forwarded to the War Related Illness and Injury Study Clinic if the examining physician elects to.
b. the WRIISC should do cranial MRI's, MRI non-invasive Angiograms, and a PET if the MRI should turn up anything.
c. then from a year to 3 years later, the WRIISC do a followup MRI series on that veteran.
d. allow VAMC Environmental Clinicians access to WRIISC exams.
e. VA Gulf War registry exams, WRIISC exams, should try to do more detailed analysis of the intestinal flora. C. Difficile

12. Utilize the personnel already in place in the Houston VAMC to evaluate for WRIISC candidates in that area.

International Gulf War Council

SUBJECT: Language for the Congressional Record Regarding the Amendment to the FY06 Defense Appropriations Bill For Gulf War Illnesses Research Funding.

PROBLEM: Not enough time to write up new wording for this bill.

SUGGESTION: could all interested readers here at least sign on a new roll call, to submit to the Congressional Office, to notify them of OUR interest to participate in future changes to this legislation. Venus

quote:

---

Originally posted by Kirt Love:
Gulf War Registry Exams

For research purposes, the WRIISC should do cranial MRI's, MRI non-invasive Angiograms, and a PET if the MRI should turn up anything.

Then from a year to 3 years later, the WRIISC
do a followup MRI series on that veteran.

I think this concept needs support, and solicitation to VAMC Environmental Clinicians so that they take advantage of it.

I submit this proposal for the councils attention.

---

Kucinich-Shays-Sanders Amendment to the Defense Appropriation Bill to restore research funding into Gulf War Illnesses.
========================
Suggestion for expanded HHS Gulf War Illnesses research funding to include previously done non-funded work to be included, to determine actual merit and expanded upon where appropriate to new and continuing research.

A significant consideration is to have inclusion of research already done by non-funded individuals and groups that have long been ignored or denied for consideration by DOD, frequently because they were not sanctioned (paid for and controlled) by DOD.

It would be helpful to have the HHS program include these prior research projects, at a nominal cost for HHS receiving results already determined.

And if agree on originators findings or if used further in future as part

of new or expanded DOD or HHS studies, then the original researchers are entitled to royalties on their previous non-funded work and participation by no less than peer review on extension of their original work.

There have been several exceptional non-funded research programs that should be strongly considered and have been ignored by DOD, i.e., Tulane University research and development of assay for squalene antibodies which led to uncovering unlawful use of squalene in vaccines administered to pre, during and since Desert Shield and Storm. Jim Moss and his colleagues for work with PB and insecticides should be considered, and several others with merit should fall into the HHS review process.

As I have been cleaning out the in-box, I have run across a few research needs, and questions that to date, still don't have answers. Many of them origionate with Denise, some from others on other sites and lists, but I am posting them here for consideration of issues needing funding/ research.~ Tonia

1. Visual changes are happening in gulf war veterans....where is the research to answer critical questions? IE what kind, how many vets have these problems, etc.

2. Dental problems in gulf war veterans... where is the dental findings, what is causing the loss and breakage of teeth, etc.

3. What exposures could trigger #1 and 2

4. Where are the results of SPECT SCANS and PET SCANS on Gulf War vets...do they show neuronal loss, or similarities of any kind?

5. What is trigerring problems of cardiac deaths in gulf war vets?

6. Where are the mortality reviews and autopsy results on gulf war vets?

7. What is trigerring rare spleen ruptures of Gulf War Vets?

8. Is there a relationship between cholesterol levels increases and OPs, PB, etc?

9. How many vets have been tested for viruses and what is the relationships?

10. How many tested for herpes viruses, stealth viruses, HHV6 and what is relationship to cardiac , dental, liver, vision, etc?

11. What is the test called that was done in registry by ear drs...re the persussion air hammer test/////and what were the results?

12. What were results of EEG and Q EEG in registries?

13. What results of sleep studies?

14. Where are results of muscle biopsies of gwvets?

15. How many GW Vets are incarcerated, and is there any connection between exposures to PB, Liriam, chemicals, etc that is common to them that has led to behavior changes?

16. Is there a way to get funding to cross check social security numbers for those deployed with death records at the social security offices to ensure that the mortality data is accurate with regard to all gulf vets versus just those who have filed claims or used the VA since exit from the service.

------------
Questions regarding the children of Vets:

1. How many have physical defects and what kind are they?

2. What kinds of neurological disorders are being seen in the kids? How many have them versus the total number of offspring born to gulf vets since deployment or post deployment vaccinations? Are there things like Autism or bi- polar or ADHD that are seen more commonly in veterans kids versus general population?

3. Is there a higher incidence of behaviorial or learning problems present in the kids?

4. Are the kids having the same kinds of issues regarding eyes, ears, and reproductive health as the vets? If so, why?

5. How do we ask and who do we ask for specific research studies to be done regarding the children, and ensure both their privacy and accurate data collection?
----------

Questions regarding oversight agencies:

1. What needs to be done to ensure the RAC and IOM review all literature/ studies relevant to the issues, not just VA/ DoD funded studies?

2. What needs to happen to ensure more of the funding goes towards answering the questions that will lead to service connection for illnesses associated with service?

Transcranial Doppler Ultrasound

Cerebral Perfusion in Gulf War Vets

The WRIISC Dr. Li Mian discussed a technique by which using the TCD ultrasound one could monitor blood flow patterns in a veterans brain.

The issue of perfusion is a decreased cerebral blood flow, which causes temporary mental confusion as pressure regulation goes up and down in a unusual manner. Another term is cerebral auto regulation.

The ultrasound device measurement is a three probe process that is non-invasive, small.
The measurement are referred to as ml/100gtissue/min, or how much blood volume as speed per minute as per body mass.

Normal values can be 50-80 ml/kg per minute while a auto regulation problem would be 30 ml/kg per minute or less.

Problem is, WRIISC does not have the TCD and Ive never heard of any of the other VAMCs having one.

With the WRIISC having the new state of the art MRI, and the new PET 3.0 that will measure cerebral perfusion in a different way - it could use the TCD as a third option in monitoring cerebral function problems in Gulf War veterans.

I propose we solicit VA to seek out and purchase a TCD for the WRIISC, and a good technician that can run it. Then suggest a pilot study of 10 chronically ill Gulf War veterans as a test bed for cerebral perfusion issues.