The Veteran Engagement Subcommittee of the VA Research Advisory Committee on Gulf War Veterans’ Illnesses is teaming up with James A. Haley VA in Tampa, Florida, on June 24-25 to host two Veteran Engagement Sessions for 1990-91 Gulf War Veterans.
These sessions provide Veterans the opportunity to interact with others and share their experiences living with and seeking treatment for Gulf War Illness. They’re free and open to 1990-91 Veterans and their family members, caregivers, physicians, scientists and members of the general public.
To encourage every Gulf War Veteran to join and share their stories, these sessions will be held both in-person and virtually, via Webex. The Veteran Engagement Subcommittee hopes you’ll join.
Both sessions will be held at James A. Haley VA Middle SCI dining room, 13000 Bruce B. Downs, Tampa. Parking is free and the building is handicap accessible.
June 24
- Time: 4:00 to 6:30 p.m. ET.
- Join online: Click here for Veteran Engagement Session Day One.
- Password: GWVET1991! (case sensitive).
- Join by phone: (toll-free) 1-833-558-0712, access code 2830 610 6829.
June 25
- Time: 9:00 to 11:30 a.m. ET.
- Join online: Click here for Veteran Engagement Session Day Two.
- Password: GWVETS1991! (case sensitive).
- Join by phone: (toll-free) 1-833-558-0712, access code 2831 198 5533.
Get more information about these meetings.
The Research Advisory Committee on Gulf War Veterans’ Illnesses is a Congressionally mandated committee under the VA Federal Advisory Committee Act. 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.
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Im deeply frustrated by the American media. Getting veteran stories out
in 2003 was way easier than 2024. So much writer bias, sucking up to
there sponsors. When Stars and Stripes was taken over by DOD in 1998
they stopped writing real stories. Before then, privately owned for over
150 years. They werent afraid to upset folks back then.
So you get this article about how this researcher solved Gulf war Illness,
I was so mad that none of the media was allowing public comments. The
story is biased. Solved? That is the wrong word. Because it is false hope
for those of us dealing with it daily. Calcium is my enemy when it comes
to blood pressure issues among other bone disorders. Like me with my
osteocytes around my damaged vertebrae.
I wrote to Newsweek to challenge, and they wont contact me or any other
veteran that might dispute this. They want a happy story, happy ending,
happy sponsors. Even if this brings false hopes. Probably inspire folks
to take calcium supplements, and end up with Hypercalcemia or worse.
No one has solved GWI yet, but we are close. Its a bit early to say you
solved a unknown. These folks are not 100% conclusive for 687,280 vets.
Granted 320,00 are dead that we know of. How would we know, cant even
get honest reporting of every day death stats among our masses.
https://news.griffith.edu.au/2024/07/15/landmark-discovery-solves-baffling-mystery-around-gulf-war-illness-in-veterans/
Here is an idea of how low priority my care is with VA.
My last colonoscopy turned up a 1cm polyp on May 28 2020. That puts you on
the every 3 year list. Well, Im way into year 4 before I had to bring this up myself.
Took several months more before the request was put in. June 24th 2024.
So they schedule my consult for December 13th 2024. 6 months just to talk
to a nurse about getting the procedure. Managed to get moved up to July
2nd for the consult exam. That is done.
Closest available date: April 14th 2025. 9 months away. That means Im at the
5 year mark by the time I get my next colonoscopy. That is the Temple VAMC
which is short handed after one doc pulled out. This is one month away from
being 5 years when this finally got done. My fault? Sure, works for VA. Blame
the patient for not being more aggressive. VA hates that side of me too.
If I keep calling in, I might get someones cancellation. Up to me to check with
them to maybe move it up. Attrition is killing the VISN 17 centers. They cant keep
people in key positions. This is VAs answer in Texas, get to you eventually. Unless
you want to risk “Choice” – and Ive had very bad luck with that. They dont pay there
bills.
Gulf war vets need specialty care clinics. That is what the WRIISC was supposed to
be. They are not. Not even close. Now the issue doubles between specialty care
and the need for a Toxic Exposure Pathology center. To collect special tissue samples
to check for unique situations, toxic compounds. What we have is delayed generic
medicine with over loaded back logs, and no tissue collections methods other than
blood labs. Dont test, dont find. Cant seem to get this point across to the committee
for 22 years. No urgency with them on medical care, collecting data, much less the
point of specialty care. Why is this so alien to VA, specialty care?
Family illness, surgeries, and deaths have been distracting, so I’ve not responded to request regarding last VA visit.
After imaging CT scan it was weeks before I was able to get results sent to me. I was not advised by ordering Dr. of impressions or need for further follow-up. It seems there was spots on the liver and kidneys that were of concern. I’ve had no feedback as to status. I think the last response I gave was relative to feeling safe on visit, which I responded yes. The other issue is regarding surgical consult for diastasis recti. I wanted a different Dr. l need direction and have a Dr I’d like to see, if possible. Can someone give me direction or feedback on what to expect.
Overall, I’ve been provided well with VA.
VAs Vista computer system is not intuitive. It does not look for medical
data, and extrapolate a logical time line. This is all done by the nurse
staff on the floor of your doctor. They pass it on to them. They review
only what people suggest to them, Vista does not assume or suggest.
You have to lean on the nursing staff via MyHealthe website in messaging.
Premium account. Compose messages, and stay on them. Bring all this
up in emails. They will pass it on to the Doctor. The nurse is your advocate
in these scenarios.
Liver could be fatty liver given your age. Spots on the kidneys could be
cyst that can get big. They will call these geriatric events. You may feel they
are something else, something more. Then get it on paper. Download
your blue report on Myhealthe website to see what it adds up to on the
server. Gives you a timeline of what was done, and what final reports
of each procedure came out to like imaging.
If you go for registry exams, they can pull your up on “Iler” and on the
“Genesis” portal to dig up medical data including civilian hospitals that
billed under your SS number. Registry exams are free. Gulf war, Burn
Pit, WRIISC, Toxic Exposure, and such. Ask for your exam results.
You want more from VA, its up to you to lean on them. Im in the same
boat as you with similar issues. All of it is a fight for every scrap. Use
the website and stay on these people every day.
https://www.myhealth.va.gov/web/myhealthevet/home
Part of why I didnt battle with the chat list this meeting is I knew
full well the Chairman wanted it like it is. His half hearted comments
about the abusive ones was for show. He did nothing to change that.
Neither did others around him. Because they are fine with there
exclusive positions – none of the people are a threat to that. Just me.
So if I cant speak up or get through, works for both sides. Really?
So it was 2 days of singular agendas, and the “I, me, myself” crowd
that love droning on about only that agenda. Not the true greater
good of the crowd. Because my biggest comment this meeting was a
voting platform to set ideas center stage – not people. Oh, they all
hated that. Made sure not to say squat about it. Play it down. Not
Uservoice, impossible.
My ideas would serve most of VA, and quite sweeping. A specialty
clinic that deals in finding true toxic tissue samples to break down
and spell out its content. We cant have that. Stick to surveys. Like
that wont help all eras. My ideas would even benefit Vietnam vets
trying to prove agent orange or exotic compounds. Cant have that.
The most insulting of all, is that I served on a federal Advisory committee
for GWI Healthcare and benefits – that they refuse to talk about it. This
committee is in violation of its charter with these VES sessions talking about
healthcare and benefits. Why not go back and look at what was NOT
implemented in 2010 with the ACGWV. Its because these fragile personality
committee members were not on that committee. Cant take away from
this one. They have to diminish the ACGWV. Ignore it at all cost.
So insecure, so self serving. As the following now is obscure. Just a hand
full of loyalist the committee coddles, at the expense of others in the room.
September 2023 was the clue, take away identities so that public comments
are male / female veterans. That sure did a lot to help them. Didnt change
it back after the show I made about that. Too hard to change 15 words.
All sides want my silence, drive me off, like they have so many others. A long
list of names that refuse to come back. Wont lower themselves. Realize this
is a dysfunctional group of opportunist. Nothing gets through, nothing gets
published. Stalemate. Cancel culture.
Im not interested in politics, personal bias, and personalities. I didnt come
here for that. What I did come here for was put ideas on the table and push
the envelope of what is possible. What I have are “yes men”, and there loyal
following of groupies they endorse. Stagnant. Lost. Bitter. Very bitter.
Its time to involve the office of the Inspector General. Not that they have any
teeth these days. Big things get by them. Like the PACT act bonuses, because
they let it go rather than take action at DOJ. There is no justice in this country.
At least not for me. Not with these people.
Things have gotten so bad for me, that I cant get a colonoscopy consult
for 6 months. Never mind the exam, Im looking at 6 months just to talk
about the exam. Attrition. Im long over due after that 1cm polyp the last
time in Temple VAMC.
Here in VISN 17 the VA drives off doctors, nurses, and support staff till
they cant find anyone to fill the spots. Doubling up loads for others
who cant handle the added shifts. Squeezing out what is left of these
poor folks.
Executive staff here hide behind closed doors. Cowards. Refuse to talk
to vets like me. Its working so well for them. Not face the angry crowd.
Wait us out. No need for meetings with vets like communication council
because they dont want scrutiny.
Every procedure for me is hell to get. Drags out months, years. Getting
baseline labs is like pulling teeth. Does not matter how much pain Im in,
you can wait. Kidneys bothering you, imaging – you can wait. 6 months
goes by and I dont know if I have lost my right kidney or not. Who cares.
Heart condition, 170 / 105 blood pressure. Sent me home from the ER with
nothing. Then called me afterwards, where you satisfied? I went off on that
nurse. Coughing so bad my ribs hurt for 2 months now. Edema and swelling
hurting my legs every day.
VA medical care is a bad joke here in Texas. Never mind trying to find a specialty
clinic or advanced care. Rudimentary medicine here is falling apart. All the
while Sec of VA kicking back bonuses to VA execs who allowed all this. Vastly
bloated budget but driving away walk-ins like they are handling us so well.
Lobby is empty because they created a vacuum for care.
Its pretty clear now that certain committee members have let there position
go to there heads. That they are the final authority on what gets done or
does not get done in our arena. Only, they also made it clear that certain
veterans will never have a chance at any referral to the Sec of VA.
Not just that, they have given up on scientific scrutiny in favor of personal
opinion. That age old favorite through out time that was meant to keep the
world flat, and us the center of the universe. Because not one seems capable
of the term “feasibility study”. Just ask a DOD and VA employee, if they say no
then that is enough. They already decided any idea but there own must be
shot down.
The idea here is what if? If every creature on earth started out as a single cell,
then there is enough genetic information in one cell to sequence it. Few dozen
and your improving the chances. Few hundred, should be home run. That
exist in each cryo stored serum sample in the DODSR vault. We arent talking
a frozen a mastodon in ice from 40,000 years ago, or amber covered mosquito
from 66,000,000 years ago. This is living viable organic matter flash frozen.
Disagree with these folks means discard. They might not quite understand but
that doesnt matter, because its personal, and they hold grudges. Regardless of
the topic. That alone is making sure that participation is low, like the 41 that were
at this meeting. Letting favorites speak, and censor others VA does not like.
Ive pursued the pre post genomic sequencing package for 24 years now. The
fatty tissue resection forensic comp 15 years now. The Toxic Exposure Pathology
Center going on 3 years. Uservoice voting platform 14 years. All manner of items.
The goal of this committee, help VA wait me out. Scam committee. Run off vets.
Ive discovered yet another compound I cant really go near.
Potassium Benzoate. Preservative.
Effects my heart. Produces Benzene in small amounts. Hard
to test or prove. Causes me to throw heart PVC’s. Often.
Figured it out a few days ago. Stayed away from it for 4 days and
next thing I know – no PVC’s today at all. Edema is better.
More and more synthetics do NOT agree with me. Body is telling me
what I can handle. Shorter list.
What is normal for most, is not for me, including many medications.
At least I caught on to this like I have others. Rule them out.
Frustrating though, cant live like most people. More like a diabetic.
Rules, boundaries, self restriction, self control. Sucks.
Will this meeting have anything to do with about the bio-strand that is in the blood of vets?
Or how to identify the bio-strands that vets have in them?
Continued from previous posting, part 2….
My conclusions are based on my own 32 years of medical data collection
and interaction with the medical system. You pick up on it, and I really
picked up on it. Till I figured out my Lysosome, enzyme imbalances that
effected my own metabolism. My labs show Im right. My last tripping
item is lipid mobilization byproducts of the enzymes functioning below
par at 10% to 15%. Swinging from Hypo to Hyper as I mediate the low
levels back to mid levels. Im spiking now rather than bottoming out. Hard to
regulate much like diabetes. Need more draws to know how much I need
of what supplements as the week progresses. Taken 2 years for the values
to shift upwards. Constant work. Trying not to slip up. Then hiccups.
Your not giving me answers. Your not debating with my methods. Your not
showing me to people who can do that. Your a pinhole in a door where I
can see the other side but never open that door. So what can we do to
mediate this? Build a solid communication model with a time line and
simplistic purpose. See who else wants any of this, and when? Not just
leave this to VA dogma which seems intent on status quo. Reducing vets
like me to male / female veterans like September 2023. That was vile.
I think Uservoice opens doors, and moves things along. It also shows folks
what wont get support. So we can cut out the treacle. Then from there,
start holding VA’s feet down to get answers. Make what we need to find
those answers. Get beyond debate, work on progress.
Still stand by my pre / post blood sample genomic sequencing idea because
we can amplify any DNA in the serum samples. Not get hung up on small
technicalities like red cells lacking nucleus. There are other cells in trace
amounts in that plasma. I think DODSR wants us to believe its not possible.
Lets get past the politics here, and move on mobilizing ideas for support.
Thank you for your time and patience.
Sincerely,
Kirt P. Love
Director, DSBR
Former member VA ACGWV
Not pitching ideas that most can agree to, just the committee. Which has
been a stifling brick wall for some time now. After I leave, any progress I make
with VA is slow, gradual, stinted, and filled with needless conflict. As I find so
much dogma, and bad ritualistic methodologies. At the mercy of so much
bias, prejudice, and apathy. Im a idea man 10 years ahead of the crowd and
told this all the time by leading researchers, analyst. Certainly by the WRIISC
who was no value to me during my 2022 exams. My understanding of
biological organic molecular chemistry is way beyond that of the average
person. You will see soon once Im finally published. It will happen.
Continued above in part 2..