VA’s Research Advisory Committee on Gulf War Veterans’ Illnesses (RACGWVI) will hold a virtual committee meeting Feb. 12 from 11 a.m. to 3 p.m. ET.
This committee meeting will focus on its charter review, deliberation of proposed recommendations to the VA Secretary and annual Federal Advisory Committee Act (FACA) training for committee members.
Submitting public comments
The final 30 minutes of the meeting will be allocated for public comments. The public comment portion of the meeting is important and gives Veterans the opportunity to share their voice with the committee. To hear from as many Veterans as possible, all public comments will be limited to five minutes.
Those wishing to speak publicly are requested to submit their comment(s), two pages or less, via email to VARACGWVI@va.gov. All comments will be included in the official meeting minutes. Members of the public who submitted comment(s) in advance will be called upon to speak first. Other speakers may then comment as time permits.
Meetings are free and open to all. Please feel free to share this information widely.
How to participate
This virtual meeting will be presented via Webex. (Download the free Webex App.)
- Join online: Click: RACGWVI Feb Meeting, meeting password: GWVETS1991!
- Join by phone: Dial (toll-free): 1-833-558-0712, meeting number (access code): 2760 876 6175
For more information about these meetings and other 1990-91 related items, visit the RACGWVI website.
The Research Advisory Committee on Gulf War Veterans’ Illnesses is a Congressionally mandated committee. It meets several times each year to provide advice and make recommendations to the VA Secretary on proposed research studies, plans and strategies related to understanding and treating the health consequences of military service in the Southwest Asia theater of operations during the 1990-91 Gulf War.
All meetings are open to Veterans and their family members, physicians, scientists and members of the general public.
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Im the loudest one out here. Im in everyones face. Yet, no dialogue
the last 30 days, Committee does NOT need input, least of all mine.
Its not like Im screaming bizarre non-sense or crazy ideas. After
26 years, its been low balled as much as it can be.
VA can do alot more for Gulf War vets, it simply chooses not to. The
veteran community didnt agree to this. It was beaten into submission
by 32 years of negativity campaigns. Vilifying us. Treated as subhuman
and unworthy of benefits. Each year worse than the last. Those of us that
made it this far did it on our own. Im alive by shear will power, and brute
intellect. VA did not solve my issues or even come close.
I consider myself last man standing. Not on the committee and defying
it as hard as I can. Not because its fun, or easy. because giving in is a
form of consent. VA can and should be better as a public service. Not
a good ole boy country club for military elite.
So I stand on my soap box by the doors at 810 Vermont street, ignored
each day by the wealthy and comfortable walking in the doors to there
jobs. Mocking me. Hoping one day they find me dead in the shrubs over
by the big brass VA sign. because you always mattered more than the
rest of us, combat veterans are expendable subhumans to be used and
discarded after war. Till one day the streets are nice and quiet, no on
speaks up, because no one is left. Ignored us to death.
The VA RAC has to have more interactions with veterans and veterans’ groups. We need a focus group with roundtable info to get back to the committee and to get our point across to the Congress committee’s on gulf war illnesses. We need to update all the gulf war public laws and find a treatment that works. There are two findings from gulf war research, Alzheimers and Breast Cancers not being told to the Veterans. We need to public meeting public
I kept checking and checking, but Im positive. VA made no effort
to post the RAC Feb 12th 2024 press release on VA Facebook. In
fact, its no where but the RAC website and the press release. Going
back a year at least. Really, thats all you could afford?
So the weekend before and the day of the meeting, VA felt the press
release and Federal Register notice was enough. Enough of what?
The VA’s annual bloated budget? Cant do more than that for outreach?
Not even a poster in the hallways of VA HQ?
It pretty much made sure the only people attending are a very small
group that always have. So the response would be minimal at best.
94 people at its peak that I could tell. Thats not too small.
VA wants this committee to fail. Limiting it to 4 hours was as ugly as
they could make that point. Like there isnt enough going on to fill out
more than 4 hours. How would we know, VA certainly doesnt publish
enough information annually to make any informed decisions.
There are hundreds of unanswered items germane to this issue. We dont
have anyone answering GWI healthcare and benefits questions. Other than
the PACT act data its spewing out. Trumped up numbers. With only this
research committee loosely fielding some items. Barely. Twice a year and
very narrow focus time.
The way I was treated in 2003, versus now – wow. Now its like I never did
and still dont matter, that no one matters. 2003 I had 13 camera crews
fighting for time with me, and my Germany documentary had made me
famous all over Europe before I flew to speak on German TV. Kers Von
Bagdad. Then the Johannes Kerner show. Then all kinds of world media.
On my federal committee in 2008, no one took it serious. It was to me.
I thought it mattered to Gen Thomas Plewes, it didnt. He ducks me on
Facebook and LinkedIn, former committee member with no loyalty to
the issue itself. Which is why he is perfect for the National Academy.
There is a message in that, just like the former Chairman.
The ACGWV was never even given a chance. Written off by Sec of VA
Eric Shinseki who resigned in disgrace. His bad judgement condemned
my committee and VA allowed that prejudice to stand. When VAOIG should
have stepped in on this. Realized the RAC and ACGWV had both been
subject to internal personal prejudices, and profiling.
By now people should have noticed a pattern with these meetings and the
press releases. Im all over them. Why? Profit, greed, insanity? I do not
benefit at all being on these. Its personal sacrifice being ignored by people
wanting to win favor with the wealthy, and executive branch. This is a orphan
cause they want vilified now its too expensive. Cheapen it. Im here as a
person remembering when our cause had great merit and was feared some.
When we were treated like humans. Not like now. Being thrown scraps by Sec of
VA Denis McDonough who pretty much mocks us out of camera view.
Im stunned, and creeped out its only me now posting on this press release.
The crowd pretty much mocks the committee, as I do. But, half of nothing
is even worse. Im here rather than do nothing. Alone here in the dark bat cave
listening to the sounds of water echo in the distance. “Hello, hello”, echoing
off the walls. Nothing. Really, New.va.gov and this is a silent spot like it was
posted inside a cave. Feels like it.
26 years, and I didnt go away. Talking to a empty room? Its not supposed to
be empty, and I know plenty of vets that VA failed on this. Then the wrong
people are in charge, and fraud is being committed at tax payers expense.
Because this is a public service that is supposed to be equal to all, and not
just some people. The ones VA cherry picks out. Loyal minions.
Im the only person on here, and Im not good enough? What kind of message
is that?
————————————————————-
VA ACGWV advisory committee
https://www.va.gov/gulfwaradvisorycommittee/
No, my comments here do NOT help me. All that is left is shock value
which people resent. Im making enemies by doing this. That being said,
I also have nothing to loose any more because the crowd is so very
decentralized. Few inner core who think its working for them, and the
outer crowd throwing stones from every direction with no regard for each
other. Jason text bombs so no one can chat, and Denise burns the clock
in public comments as if only what she says has merit. Disruptive, which
only furthers the Mosh pit mentality.
The end result is no bullet point list to check off each meeting. Publish
the old business, make a real time line for the new. Much more than twice
a year. Time is running out, and its speeding up for the geriatric. You dont
see what I see, and have seen for decades in this issue.
Ive got this 30 day window here on News.va.gov to pack in all I can that
the search engines will find. To take this further, and show veteran input
that ISNT reflected in the meetings. There is much more going on, and its
NOT like the old days with VA executive staff. When they feared us and
knew a hearing was coming every time we met. That lack of fear now has
made VA bold and pompous. Its internal membership above the law.
I come off a radical in these diatribes when Im not. Have no criminal record.
No arrest. No history of violence. No drugs or booze. Not waving guns around
screaming 1st, 2nd, or 5th amendment. Nothing that would merit me a danger
or public hazard. So they cant claim Im any threat on any kind. What I am is a
citizen that has been denied due process to civic and other violations of
my rights by a criminal law called the Feris doctrine the rich hide behind.
I once asked Johnny Cochran at the press club in DC if he would ever take on
the Feris Doctrine. A most emphatic NO. He knew this one no one lawyer
could resolve, and it would be Supreme Court right up there with Roe vs
Wade which just got gutted. Another huge injustice. Then he signed a book
and gave it to me as a conciliation. One of many books, like Ross Perot and
Bob Dole. Like that helped.
Its necessary for me to very vocal here because in 30 days I will be cut off
once more, and VA will claim all is well when its not. Congress will drop the
ball, and about 10 people will be happy in all this. Certainly not me.
22 years with the RAC, and 26 years in this arena. Defying the system in
ways you would never imagine. Risking myself, and any lively hood to be
black balled and labeled by people who vanish as the years pass. Till
there is nothing left. Like it is now. So much injustice, and indecency.
People dying with nothing, forgotten, and ignored to death. Too many that
I have seen personally that died too soon. Im pretty lonely now having
survived so damn many. Liked it better when there was a crowd of some
kind. Now its a necessity because I knew those folks and they exist through
me if I let them. Even if we hated each other, was better than now.
Its 2024, and Gulf War vets deserve better. Pact act is not enough. We
need a common unifier like UserVoice to give ideas a platform. To give
ideas merit in the open, and make changes we all benefit from.
Being here literally cripples me in so many ways. Makes me a pariah. Makes
my life so damn hard. Keeps my hands tied. But, I cant walk away, and hope
someone else will step up. Not going to happen. So its on me. This is a life time
sacrifice I deeply resent but have to stick to. So dont condemn what you do
not understand. You can hate me, whatever, but dont ignore me and think that
my ramblings dont matter. Human lives depend on me trying even if its
hopeless. Run out of options, and time. My time is almost over.
Another note of how bad this has all gotten. VA did NOT post the RAC
press release on VA Facebook before or during the this meeting. This
was totally played down in the media and any circles.
How is that for a glowing endorsement from VA? The press release will
no doubt go out late on VA facebook now I pointed this out.
Oh, how dare I say any of this. I dont know my place in society. Gulf war
vets are not to be seen or heard from in public, as we are 3rd world
citizens in America. We served the wealthy in there economic war, and
now we must die silently to lower that cost for the wealthy. To demonize
us, vilify us, so that people dont care.
This is the work of George Bush, daddy and son. Both knew what went
wrong and covered it up. They get to live the good life. While the last
33 years people like me pay the price for there folly. Jenna Bush gets
to be on TV thwarting her good fortune at me, on the blood and bodies
of GWI vets that have died since the war. Which is now over 300,000
just based on natural public average. Since the real numbers are not
published. What a daily rub.
Too bad, so sad you were dumb enough to serve in a war. Combat vet
means nothing to the average American. Most cant wait to spit on one
to some how feel superior. Druggies and drunks mean more to law
enforcement that combat vets. At least here in Texas. Largely thanks
to the demonization by the wealthy and DOD.
The hard part for me are the tax dollars spent to do so much of this
backwards, and badly on purpose. To keep veterans from care. To make
them seem selfish if they try. How dare we think we are some how equals.
The rich know full well, we are cattle to be slaughtered.
This country has no shame. Others look on bewildered. Where is this
all going? I can tell you right now – Sec of VA Denis McDonough signed
off on VA not announcing the RAC meeting press release on the VA
facebook page. He wants all this to fail. Former Bush white house hate
monger.
I have the right to be critical here. Because the things I suggest are
common sense. Simple, small. This government has decided anything
I ask is too big. Just let Congress keep raping America bleeding off
trillions to play. Pushing us off the financial cliff any day now.
Live simple, think small. Thats all I do. How is that not enough? Its too
much in a system that is out of control.
In the early days back in 2000 I learned of the tissue storage at
the AFIP. They would not catalog it by title like Gulf war. Then I learned
of the HIV cryo vault that stores permanent blood samples of soldiers.
Mike Kilpatrick of OSAGWI put several ideas in my head.
By 2005 I was pushing genomic sequencing of those blood samples
against current ones held by Dr. Robert Haley. I told the RAC of
my efforts, and the cost of doing this. With a price tag of $1,000,000
for the analysis. Sequencing was slowly coming down. At that time
it was $1,500 per person. Trying for 100 vets.
The years kept rolling by. I would keep updating the information and
keep asking Dr. Haley. After a certain point he stopped talking to me.
I thought for sure being on a VA Federal Advisory in 2008 would have
gotten me enough tenure in this to get this launched. Instead VA attacked
me and accused me of improper committee conduct. That and the 3T MRI
for Temple VAMC in Texas. Instead we got nothing. Good ole VA.
DOD serum repository flat out lies that it cant access these HIV blood
samples. They dont have written permission from the vets who gave them.
They would hide for years behind the concept of so called privacy.
By 2013 I was pissed, why is this dragging out. I pitched it once more
to the RAC and that chairman said it was brilliant. Then this went silent
again for years. No matter how I pushed.
2020 I speak again of it. Now Sequencing is dirt cheap. Analysis is also
coming down. Ask the current VA tissue repository who cant swing it.
2022, comes along – still pitching the idea of the pre and post tissue
sequencing to end the debate of cause. If you changed after deploying,
then what was unique in our total DNA. No one bit.
2023 a ray of hope. Darpa and DOD serum repository says they have been
trying the very things I have proposed now for decades. DARPA says it
can amplify the DNA in the cryo samples, and DOD serum repository
says it will grant access. Then it goes silent once more.
February 2024 all this is silent once more. The end all be all answer to the
Gulf war, proof we changed after the war. What changed, can we out it back.
Viral RNA / DNA insertion. Nothing? RAC has nothing on this? VA?
This is not right. The science is there. It should be done and over with.
This very concept would eliminate the need for the RAC any more. Is that
it? Keep there jobs at our expense? 33 years later?
I attended the virtual meeting. It was everything I expected from
a closed loop committee. Your on the inside, your alright. Your not
a member? Tough luck. But, the RAC does not give me credit that
for 20 years Ive never asked to be a member. That I know better than
have my hands tied again. Like I did with the VA ACGWV in 2009….
So much time wasted on the ICD 10. Which is pointless. This isnt research,
this is a benefits issue. Yet, they choose to ignore me while violating there
charter. Told them, contact the Sec of VA and have him service connect
via time and location for 3.317 and we have it. Executive Authority. End
the debate. Yes, he can do this. Other wise, congressional mandate.
Got ugly towards the end. Too many wanting to speak during public
comments. Ive sent in my written statement. So I volunteer my time to
Jim Moss who hasnt spoken in a decade. He was way down the list, and
was not going to get to speak. Jim kind of let me down making one short
comment. Then Denise Nichols starts using everyones time again. This
was highly insulting that I gave my time to Jim and Denise thinks its
hers to burn. Others were told 2 minutes after her. Wasnt fair at all.
Part of me knows I should be on this committee to get a handle of
several issues. Other part of me knows I would not last long because
Im a fighter. Policy and Planning would tie my hands again. Threaten
me all the time. Chairman would hate me beyond measure. ORD would
set me up to fail. Cut my throat. Torn over this. Year after year. The
one person most of it all that would oppose me being on, Sec of VA
Denis McDonough who knows this is a grudge match. He likes things
quiet and no one to oppose him. Dodging me after our conversation.
Coward.
Im a subject matter expert, and I deserve better than this. What to do?
Gulf war vets are being silenced by technicality, with healthcare and
benefits in quiet limbo. My arena, my platform, my soap box. So that
this research crowd can keep burning the clock.
Today’s RAC meeting was a really bad joke. Worst ever. 4 hours? VA
is no doubt thrilled. Im stunned at how this keeps getting worse. But,
at least we could submit for the record once more. I fought hard for
that. No one really wanted to even admit it. I changed this, put it back.
Yes, it was a committee decision. So was treating me as Male Veteran
during the last public comments. With no say Sept 2023. They never
corrected that.
Good ole boys have us off track, and little people like me can be treated
as subhuman in a supposed democracy. Today we made zero progress?
I have a HUGE problem with that.
The last meeting Sept 2023 reduced public comments to Male /Female veterans to avoid the subjects. So much was said, and it was editted down to nothing in the minutes.
I talked to Sec of VA Denis McDonough that morning in front of VA. Stipulated the need for further discussion about the plight of Gulf War vets. He mockingly put my name in his cell phone in front of Ed Bryan and myself. Never heard back from him.
This meeting I wrote a public comments that I submitted before hand. To be entered as a statement for the record on the VA.gov website. The content is relevant even if some of it goes back 20 years.
This meeting is virtual for 4 hours. It’s meant to wrap fast and quickly be forgotten. Rather than come to Texas and face angry vets. Wrote us off.
PL 105-368 put all this into play in 2002. The RAC and the WRIISC that have not kept pace with science and medicine. All of this needs revision, updating as does VA itself. It’s not current or useful.
Vets like me will be muted the 12th. Unable to get attention as vets like Jason text bomb the chat bar into oblivion. The chat bar is not even recorded and saved to show what veterans are interested in. So all we have left is public comments that go ignored. Including the Sec of VA who ignores the committees suggestions the last 20 years.
None of this is fair, and so our plight drags on. Media could care less. Congress could care less. VA certainly doesn’t care. Up to me to find my own answers and boy have I. No thanks to any of this.
Time to revise pl 105-368 and make all this work.