Gulf War Illness Engagement Sessions scheduled in April

I am still looking at Stem Cell Therapy and looks like I hit a nerve. We need the committee to look further and see and at least another look and see approach. I know their getting ready for Clinical Trials Implementation and how many Trials are there?
This is great news, but nothing to tell the veteran community. We need as veterans a better accountability of a treatment. The VA-RAC has been listening to Doctors and Researchers for 15 straight years with no success. We may have to review the business outcome and determine an outcome. Spending cost for gulf war illnesses or CMI is an all-time high, Close to a Billion Dollars if you add everything up. We need a $100 Billion or less for the Pact Act alone. The VA-RAC meeting on April 23-24,2024. was a great turn out but all information should be voted on by the full committee.

Im extremely surprised at the reactions the 23rd to getting viable DNA
from blood serum. There seems to be a effort to play down the DODSR
and a specialty clinic to call on them to amplify and sequence the 1989
HIV serum samples. Technicalities.

Of course the DODSR wants everyone to believe it cant be done. There
email to me was just for that purpose. Only this is NOT a new problem
and many worked it out over 20 years ago. There are almost 20 variations
of methods pioneered from 2003 to present both in forensics and in the
disease diagnosis industries that took this challenge. DARPA helped
pioneer some of this 8 years ago. Which they have only recently begun
to talk about. Joint ventures with WHO and CDC for one.

Ide have to write 15 pages of material to the committee covering much
of that history and the kits pioneered because of it. That is not my job,
and would not have gone over well. That is what your technical staff should
be doing which seems to allude them. Just dismiss me outright.

I allowed that the 23rd to see how far the committee would go. You let
others drone on rather than even seek my input. Right up to the close
of the meeting. What, read my letter after the meeting but comment
on it during the meeting?

There is a structure to all this. The PL 105-368 that failed to produce
supportive evidence or specialty care. The failure of the WRIISC to
be available and sympathetic. VAs ongoing grudge match to keep the
evidence at bay. Keep healthcare and benefits vague for us. Since 2012
VA used policy to defuse the issue even more. Take out the advocates
and stop the RAC from publishing – opposing. All this time Ive been trying
decade after decade to refine the final request that would produce
substantive evidence. Genomics and true tissue sample collection.
Stopped over and over by all manner of bureaucracy.

Your lack of enthusiasm the 23rd showed me you plan to blow off my
discussion and content. Its been already decided by VA. Your glad to
listen to anyone but me. To ignore this and find easy faults to play it
down. Im a damaged veteran trying to find answer and its easy to
find fault when you look at my writing. To look at syntax, structure,
grammar, content, and dismiss me like snobs over whatever you can
find that day. But, Im trying like hell here with good science, and
being trivialized is a sign of extreme arrogance. Ide be better versed
if I was a part of a committee getting current intel from within rather than
datamining on the outside to keep up. In my case, to surpass.

27 years of this, have you not figured out just how determined I am?
Its not important to me you find out what I know, its important to me
you hand off to people who can understand me. Because I spend
every day studying molecular medicine refining my understanding
of cellular functions at the quantum level. Why the enzymes are
out of balance, why I produce far more lipids than I need. What part
of the genome effected this the war changed. Is that compound in my
adipose body tissues doing it now?

Im ready to talk science and tech, not politics and favoritism. I think this
committee has lost all perspective and leads to meeting where only
25 people attend. Because I know whole other crowd that wants to
be a part of this VA drove away, and they hate what this committee
has become. Starting with Jim Binns that they dont need.

Your going about this wrong, and the need to play me down because
you have better answers is not the case. The ACMO should look into
how this committee is functioning, and methodology because I do not
find you objective – more subjective. Arrogant. Wasting valuable time.

Watching you the 23rd, you plan to go on adinfinitum this way. Burning
the clock which Im sure VA is thrilled with. I demand results.

Sincerely
Kirt P. Love
Director, DSBR
former member VA ACGWV

In April 2022 I had a hard time getting a WRIISC referral to the DC
center. Peter Rumm finally had it taken care of with some effort. Got
the request in, and 2 provisos.

1. Gene sequencing my pre and post blood samples from the war and
now to show genetic damage.

2. Take a adipose fatty tissue biopsy and have it analyzed.

When I finally met Dr. Barrett in charge of the WRIISC, he really built up
what the clinic could do for me. But, after a few months of local VA
visits and extensive video phone sessions – it was empty promises.
Pretty much psychiatric exams with repeating themes. Like implying
I want to hurt myself, and I dont.

When I pressed Dr. Barrett at the end about the 2 provisos. He said a
flat no to them. We dont do that here. Even implied the ideas were
too far ahead for them. Like 10 years ahead of them. Then pretty much
told me my only real option was PTSD. Even though they found evidence
of a possible TBI from the war. He had nothing, and was just trying to
force me square peg into a round hole. Some clinic.

In forensic circles my ideas arent a big deal. Almost routine. Been heading
this way for along time now because of the gas chromatograph, and mass
spectrometer. 2 things our crowd would benefit from in a clinic. Only, this
is mostly autopsy equipment. Some research clinics.

Been howling Toxic Exposure Pathology Center for some time now. A type
of specialty clinic that would not consider tissue biopsy invasive and
shrink from it. That is VA’s position all around. Toxic exposure exams, the
burn pit registry, and PACT act over all will NEVER take physical samples
this way other wise. Will end up oral 10 minute exams at best.

PL 105-368 failed us on the WRIISC because VA wanted the WRIISC to
fail. Getting rid of walk-ins was big goal, and they got it. Exams and such
are done from home by the same VAMC’s failing them. You never see the
inside of a WRIISC or shake one hand. That is not what we asked for with
PL 105-368. A specialty clinic able to do more than general medicine.

We need specialty programs and clinics. VA does NOT provide them. the
sad thing is PL 105-368 language says it can. Same with PL 117 – 168. The
word “amend” is lost to Congress on both. Tweak the language.

Im going on 33 years trying to get answers, and the people turning me
away have no urgency because there lives are on track. Who cares if I find
answers. that lack of imagination and clinical detachment has not improved
the lives of me or my fellow 1991 vets. We have been ignored, turned away.
and waited out up to now. Not the letter of the law or its intent.

We need specialty clinics and the WRIISC is not it. Pathology, even the forensic
type does have answers if VA would stop twisting the intent. Claim to look
for Toxic aspects then ask only oral questions. The science IS there, and it
doesnt have to be post morteum. Its not 10 years from now such as the current
WRIISC suggest. They had there chance, time for something else, better.

Going to try something different once more, post my public comments
here before the meeting. Have to split this up because only allowed
5,000 words per post. Doc word count says 2,139 words. See what this
does. But, this will reach more than the RAC website will. Yep, server
rejected it. VA punishes us by implying these are longer than they are

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The RAC has increasingly tried to buck the system this last year. Not be held to VA dogma that they can ONLY listen to research proposals. Enough criticism both outside the committee and within the committee sparked options such as the VES. But, it is not enough given the lack of representation in this arena at the top levels. Oh no, its very conditional. We have members of our ranks that spend more time running interference than handing materials to VA leadership. So there is a highly biased channel here that isnt doing its job. The end result is conditions of PL 105-368 that are not current with 2024 that allow VA to capitalize on the heavily biased research aspect, leaving out true healthcare and benefits concerns from public moderation of VA leadership. The end result is stagnation of many aspect including the failed 3.317 which hangs on the antiquated concept Undiagnosed Illness. VA had countered this long ago by forcing doctors to diagnose any GWI vet, even if its wrong. So the law really needs to change to service connect to time and location such as the PACT act does for OIF.

PL 105-368 original intent in 1989 was to produce specialty clinics for gulf war veterans to help us diagnose and support us. VA changed this in 2002 to the War Related Illness and Injury Center that they shaped into a one time visit clinic for all eras. It has not served our needs and over time didnt even allow walkins any more. This was not the intent of these. Having used this myself over 22 years I had to twist and force my way in to find small answers. What was kind and polite in 2005 at its grand opening in DC VAMC is now tightly closed door programs focusing on psychiatric research. My last run with them in 2022 was very disappointing even trying to get labs done. Because rather than travel there, you do it from your own VAMC. Nothing cutting edge about them. Leaning on Somatic medicine disciplines which is deployment healths 1995 agenda – not the vets.

Another problem with VA is that ist removed just about everything else PL 105-368 outlined such as public annual reports to congress, specific newsletters, outreach, specific reports such as GWVIS, and as of 2012 got rid of programs like the GWI Spouse and Children registry to ignore them to. At every turn VA has taken away. Till 2024 its totally demonized GWI concerns and ignores even the RAC with a certain degree of malice. As I found out from the September 2023 meeting when I confronted the Sec of VA Denis McDonough – he is most certainly not sincere about dialogue, outreach, or follow up. Blew me off and ignored me ever since. That is one of 18 emails since 2022 Ive written to him that VA has responded in every but directly from him.

Now we have the added pressure of the current PACT act being non-responsive to Gulf war vets. Its timed such that only veterans after 2003 warrant attention. VA capitalized on its loopholes, and has been issuing zero percent ratings in mass. But, Gulf war vets do not qualify for the bulk of the PACT act other than its terminal parts. Ive tried since day 1 and found it severely limited to things that would not aid my VA present rating. PACT act will eventually be amended, but for now VA knows it fails Gulf war vets and wants to pretend all is well. It excludes us from 1991.

Ive contacted the Chair of the Senate VA office and outlined much of this to them. This last time was a 30 minute conversation of the last 3 years in quick summary. I had said in a news article in Jan 2023 that the PACT act is filled with loopholes. That a year later we would see the denial rate, and how many would get a zero rating. I was ignored. Still am. But, Im not wrong. So it will take time, even more years to resolve this largely because of snide egos of mediocre careers in our arena keeping people like me away from the executive branch. To go on playing doctor but keeping the patients from being able to complain in mass, in unison.

Part 2 ………………