Saturday, March 19, 2011

Email to VA: Why Is VA Still Providing and Touting Flawed GWI Clinician Guide

The email below was sent to VA Chief of Staff John Gingrich’s point person on Gulf War veteran issues (COL Jeff Peters) tonight, March 18, 2011. 

It remains unclear why VA has a uniformed, active duty DoD military officer from DoD’s Office of Force Protection – the source of nearly all of the Gulf War veterans’ mistrust – as VA’s lead staff member on this veterans’ health issue.

--Anthony Hardie


Col. Peters,
A few weeks ago following the most recent RAC-GWVI meeting, we discussed your assertion that there was a new Veterans Health Initiative (VHI) publication.  For those cc'ed on this email, the VHI has healthcare providers treating ill 1991 Gulf War veterans as its target audience.  Thereafter, you sent the email pasted below, to which I have to date received no response. 
Several weeks later, I note that the Gulf War VHI on is still the same 2001/02 VHI that everyone has been calling for the last several years for VA to remove because much if not most of it is seriously outdated, misleading, and in many cases now known to be false.    Here's the VA webpage on which it is touted and linked, for easy reference:
Among the most serious errors in VA's current PGW VHI, featured on your new Gulf War website, are:

  • A focus on "reassurance of patients" rather than providing treatment, or in the absence of effective treatments, explaining with honesty that there currently are none.  These statements alone beginning on page 27 and written by a psychiatrist who is still to this day open about his disbelief in GWI and quit the CDMRP GWIRP review panel last year because the other panelists refused to agree with him (Col. Chuck Engel, one of the supervisory officers reprimanded in the Fort Worth Islamist shooting incident).  This inappropriate monologue on communication with PGW patients goes on for seven pages -- more than is dedicated to any other topic in this VHI. 

It is this kind of lack of responsibility that continues to turn veterans against VA.  Why wouldn't it?

  • "Infectious diseases, however, have not been shown to be a major cause of chronic illnesses. After 10 years of intense clinical observation and study, it is increasingly unlikely that an infectious or immune process could cause serious health problems and remain undetected." -- This flies in the face of VA's recent presumptive service-connection of 9 endemic diseases for PG and Afghanistan veterans
  • IOM has found insufficient evidence on any PGW exposures -- obviously outdated and now false
  • Suggestions that GWI is the same as occurs after every war -- this is a myth scientifically refuted long ago
  • Most Gulf War health issues are diagnosable -- this stands in direct contradiction to IOM's GW Vol. 8, which finds 250,000 with chronic multi-symptom illness
  • GWI doesn't exist -- another myth, exploded by science and publicized by both RAC-GWVI and IOM
  • The falsehood that GWI is really one of 7 conditions:  FM, CFS, IBS, PTSD, Depression, Anxiety Disorder, Headache
  • No unusual risk of ALS -- Patently false
  • OP chemical warfare agents cause symptoms that are virtually identical to those caused by OP pesticides.  -- False

To keep this VHI -- which angered the entire GWI community when it was first released in 1998 and again in 2001/2001 -- on the VA website irrefutably demonstrates that VA continues to hold these flawed beliefs as current, accurate, and meaningful for VA and other healthcare providers. 
To make this more personal, can you imagine how insulted you would feel if you went to your doctor with a very real set of debilitating health symptoms, yet your doctor spent the entire appointment trying solely to "reassure" you as is carefully and extensively advised in VA's Gulf War VHI?
To keep this VHI on the VA website is not only a disservice to Gulf War veterans and their health care providers, but a slap in the face of every committee, researcher, and veteran who rightly called for its removal.
It should go without saying, but having such very bad information actively being provided by VA is worse than having no information at all.
What will it take for VA to listen and finally remove this highly flawed VHI as has been repeatedly recommended?  Please advise me.
Anthony Hardie
Madison, Wis.
On Mon, Feb 28, 2011 at 2:48 PM, Peters, Jeff <> wrote:
Hi Tori,
I had a question today about the new VHI I did know the answer to and wanted your help.  I am looping Anthony Hardie, who asked the question, into the conversation.  Regarding the new GW VHI how did we construct the education program so it was more relevant to the 1990-1991 GW Cohort?  Thanks Tori,
Jeffrey Peters
Special Assistant
Office of the Secretary
Department of Veteran Affairs


Sgt.Robinson John G. U.S.M.C.(Ret.) said...

PART 1 of 2
It's truly sad that The V.A. continues to look us in the face and tell us it's all in our head. That my be true to the point that I have brain damage from Nerve agent and the other toxins listed and have no doubt that the medicine administered did have a
compounding effect. Now I live an hour from the closest out patient
clinic and over three hours away from Atlanta my assigned V.A.
Hospital. The outpatient clinic is nothing but a waste of the V.A.s
meager budget and the Hospital is worthless to me because I can't
travel that far. Yet I've been told that I can't get any "Local"
Health care because this is a "Reasonable" distance to receive
health care. I am one of the more serious cases. I am completely
debilitated from brain and nerve damage and it doesn't take a
rocket scientist to see what's wrong with me. If The V.A., D.o.D.and the C.I.A. would open up the documents that prove why we are wounded and sick, yet treated like all 200,000 or more of us are just lying about this Horrible disease. My body is working overtime to self destruct all of my joints, muscles, eye sight ,sinuses, motor skill
abilities, memory and the list goes on and on. I was part of the case study at the Birmingham, AL. hospital in 2000- 2001 I don't have the exact date in front of me. I went through a week of intense test everyday. I left there with some hope that The VA would actually do something about it that would help me, but all they really did was study what our symptoms were so you could train your staff how to avoid giving us any real help, but plenty of excesses and many times they will all but tell me to my face that I'm just lying and give me another pain prescription. I as well as the thousands of us who are in
severe pain and suffering are so sick of looking to you for hope or
help, I live with pain every day that if any of the members of these boards and "studies" had to live with they would have fought
diligently without wavering until there was some real help, real
research and some real Truth put out for the entire country to see
how you have covered this madness up with these out right lies and
let those of us too sick to do anything about it just fade away into the forgotten. I haven't had any REAL health care in ALL these years. While I can set back and watch The VA waste money hand over fist on things like an outpatient clinic in Rome, GA. that only has two doctors and a couple of quacks, not to mention a few of the staff couldn't pass the third grade if tested next year with a years worth of advance notice to study. If by chance there happens to be a good doctor in the group their hands are so tied all she or he can do is send me to Atlanta, when the one hour trip the closest clinic was more than anyone in this condition should have to bare and this is not to mention that while I have Medicare and "So Called Health Care from the VA to get to this sad little clinic I go right past some of the best doctors in the country located in The Harbin Clinic system. I'm talking Doctors who are Top notch in just about every field I need to be seen for.
Yes I would like a response!

Sgt.Robinson John G. U.S.M.C.(Ret.) said...

PART 2of 2 All I'm asking is to come out with The Truth, Allow your staff to do what they can to help those who live close enough to reasonably seek care from those Hospitals and clinics and give the severe patients like myself a way to go to doctors close enough to where we live that we can actually go and get help and between the VA and Medicare you would think someone would have thought about the two joining together to give us real health care and to spend all the moneys they are currently throwing away into research in THE PRIVATE SECTOR so that just maybe there will be some real plausible TREATMENT come from it.
WE ARE SICK FROM BEING WOUNDED ON THE BATTLEFIELD, YET Not ONE of us have a "Purple Heart" and we are treated like we are Leapers and no one is willing to believe us much less do anything to help. You have built into the system very well the unwritten rules, that if one doctor for,God Help us all, Should go out on a limb to help us it's certain the limb will be cut and the doctor would be made and example of how not to buck the
system and actually try to help us. I'm as Proud of my service to my country as anyone could be sick
or not, but the very thought of the VA makes me sick. Now with the
economy in such bad shape, prices of everything keeps rising (We
have to spend a large part of our benefits to buy over the counter
medicines like sinus meds. to just help me try to clear my nasal
passages enough to get a few naps throughout the early hours of
the morning. It never ends. I'm so disabled now my wife is my
caretaker almost 100% of the time, It's impossible for her to work
outside of the home, she couldn't earn enough to pay for someone
to take care of me, much less the gas to and from work and all the
add expenses that we would have if she wasn't here taking care of
me and making what little we have coming in make do.
The first step would be the easiest, JUST SIMPLY LET us who are some of the worse cases and live far away from the Sad VA Hospitals, go to a local doctor as our primary care and allow them to refer us to LOCAL Doctors who are the Specialist we need to be seeing.
If I could afford to pay the co pays and for supplemental coverage and prescription coverage,I would have been going to private doctors long ago, but You don't tell the world the truth about how sick so many of us are so no one has ever looked into the VA and Medicare joining together to get us REAL Health Care. I post everything I can on line about the plight of The Gulf War Veterans and still I can't hardly find anyone outside of family and friends who even know anything at all about it.
The Government that has had the knowledge of our plight should be forced to make public all doc-uments that would not jeopardize National Security. The entire Government should be part of an ad campaign that would inform all of the American Public, of just how bad this horrible disease is, what caused it and that they have known about it for all these 20 years now.
Every American Service Man or Woman who was wounded by this in the line of duty while in the area of combat should be awarded The Purple Heart, Living or posthumously. It's far Overdue for America to come Clean with these lies and show the ones who paid their share for the freedom this country is so blessed with!
Yes I Defiantly wish to receive a response to this letter.