Written by Anthony Hardie, Gulf War veteran.
For nearly seven years until last Summer, I served on the Research Advisory Committee on Gulf War Veterans' Illnesses (RAC) as a representative Gulf War veteran suffering from Gulf War Illness, a complex disorder with neurological and immunological components brought about by toxic exposures during the 1991 Gulf War and which now affects roughly one-third of the 697,000 veterans of that war.
I also continue to serve with the treatment-focused Gulf War Illness Congressionally Directed Medical Research Program (CDMRP), helping to steer its course through my role on the program's Integration Panel. In that role, I've reviewed virtually every one of many hundreds of research proposals that have been submitted for funding since the program begin in Fiscal Year 2006, and have fought hard every year since with fellow Gulf War veterans, allies, and our friends in Congress to fund the program each year. Through that role, I've been able to see what real treatment-oriented research and a genuine treatment-focused treatment program looks like, which has helped to make increasingly clear how broken VA's Gulf War Illness research effort really is.
During my tenure on the RAC, I did my best to represent my fellow ill Gulf War veterans, respectfully providing the wisest and most representative comments I could to VA during our discussion and in our reports, spending many hundreds of hours reading research publications and relevant medical textbooks, and spending countless time talking with researchers and ill Gulf War veterans to provide the best possible insight to VA and the other members of the panel.
As part of that effort, I also served as the sole Gulf War veteran on a VA's Gulf War Steering Committee, a committee created by VA staff composed of five members of VA's National Research Advisory Council and four members of the RAC. None of its meetings were public and it was never clear to me how that this advisory body didn't fall under the Federal Advisory Committee Act (FACA). However, I trusted VA staff to be doing the right thing as we worked diligently in Washington and via teleconference in a myriad of meetings of the full committee and many drafting subcommittees to create a first-ever Gulf War Illness Research Strategic Plan.
When the plan was complete in early 2012, after around 18 months of work, we didn't hear anything back for quite some time. Then suddenly, in May 2012, we heard back from VA that it had unilaterally and substantively edited the consensus-based plan. This was just shortly before the next schedule RAC meeting in June 2012, to be held in Boston.
In reviewing the VA staff edits to the plan, made without consultation of any of the many advisors who had worked so hard to create it via consensus -- no small achievement for any working group on any topic and even more so on a topic as difficult as Gulf War Illness -- it became apparent that the edits were essentially a terrible whitewash of the document.
The RAC responded strongly at its June meeting, most of us still in shock at the turn of events and a return to a much darker time in dealing with VA. Some might even characterize that response explosive, given the anger at having been convinced ever so slyly by VA staff to work so hard to create that consensus plan, only to see it whitewashed and many of its most important recommendations changed beyond recognition. The RAC issued a series of recommendations reading the report, called for VA to return to the January 2012 version of the plan, and unanimously issued a "no confidence" finding in, "the ability or demonstrated intention VA staff to formulate and execute an effective VA Gulf War illness research program."
The RAC then saw meeting after meeting cancelled. Despite a regular schedule of three meetings per year, the RAC was not allowed to meet again until a full year later, in June 2013.
As will be discussed in a little more detail shortly, two of the three of us Gulf War veterans resigned from the RAC last June in protest of VA not listening, in the hopes of raising awareness of the many serious issues that VA continue to fail to address.
Now, following this week's meeting of the RAC, I have been made privy to some discussion about VA's Dr. Robert Jesse suggesting new moves related to restarting the VA's Gulf War newsletter.
The last time VA restarted the newsletter was after I made it a key point in my July 2007 Congressional testimony. Here's what I said about the newsletter then:
"It is stunning that after nearly two decades, we still have little information to provide to Gulf War veterans who remain ill from their service.
It is true that VA does still have an open door for Gulf War veterans to be seen at VA medical facilities.
However, being seen is not the same thing as being treated.
The VA’s Office of Public Health and Environmental Hazards website contains little information that might be of any use to ill Gulf War veterans or their health providers. Much of the information provided is dated between 1996 and 2001, years before the more recent research discoveries related to ill Gulf War veterans that affirm what Gulf War veterans have been saying all along – that their Gulf War exposures are what made them ill.
In July 2006, the VA’s “Gulf War Review” included an article entitled, “Straight from the Source: VA’s Environmental Agents Service is Serious About Communicating With Veterans.” That issue, a year ago, was the last issue published."
[FOR THE FULL TEXT, SEE: http://veterans.house.gov/
VA staff scrambled to respond to the Congressional committee regarding this issue. They lied (again) at that hearing and said the next it would be published shortly after the hearing -- but then didn't publish the next issue for nearly a full year thereafter, not until May 2008.
The present VA leadership inexplicably allowed the newsletter to die yet again after last publishing it in July 2010. Should they restart it? Obviously yes -- but they don't deserve praise for fixing something they themselves allowed to break. Sadly, the staff issues at VA remain a problem, and like the last Administration, the present VA leadership has failed to fix them. Administrations come and go, but the problem career staff at VA headquarters remain entrenched in place, like the problems they create.
But the newsletter is really a side show, and most of the research news on GWI comes from outside the VA's failed research efforts. The real core issue for VA leadership to address with regards to the RAC, from my 2009 Congressional testimony, is this:
"When will VA begin a treatment-focused research program -- as called for in the more than a decade-old Persian Gulf War Veterans Act of 1998 -- that is based on alleviating the known health effects associated with the known toxic exposures of the 1991 Gulf War? VA officials note in this press release, “The IOM report noted that the illnesses seen in Gulf War Veterans cannot be ascribed to any psychiatric disorder and likely result from genetic and environmental factors,” yet not one of these new expensive new studies focuses on environmental or genetic factors that caused 250,000 Gulf War veterans’ illnesses."
[THE FULL TEXT IS HERE: http://
This is a journey on which VA has barely begun to embark, nearly five years after that very public testimony.
It's not that VA leadership hasn't been advised -- repeatedly -- on what needs to be done. That advice has been provided respectfully and repeatedly in closed door meeting after meeting with top VA leadership, in RAC report after report, in Congressional testimony upon Congressional testimony at hearing after hearing at which senior VA staff are present. It's that they have failed and continue to fail to do it.
The Research Advisory Committee is about *Research* -- nothing more, nothing less -- and before the despicable charter changes signed into effect last May, it was aimed at improving the health and lives of ill Gulf War veterans. There are those who would like to direct attention elsewhere and make the VA look better. However, current VA leadership have done nothing to merit reducing Gulf War veterans' critical scrutiny -- and in fact have left things much worse then before this Administration started... and I'm a lifelong Democrat with strong involvement in Obama's campaigns, so my comments are the furthest thing from partisan in nature.
Some are now trying to suggest that confrontation with VA is bad. I wrote above about the roots of what VA staff have done that led to the RAC becoming increasingly confrontational with a very broken VA, and they were provided in more detail in a May 29, 2013 letter from RAC Chair Jim Binns. Confrontation isn't bad when it's constructive, which it always has been. It's simply that VA leadership remains deaf to Gulf War veterans' needs.
Instead of fixing the issues raised in the May 29, 2013 Binns letter, VA staff, backed by the VA Secretary, decided to move forward and gut the RAC's charter. Along with those very serious changes to the RAC charter, they decided to sweep out the old for new people, perhaps in the hopes that some might be more willing to "sing kumbaya" rather than rock the boat and actually raise substantive issues of needed change in VA's research direction.
I was told at the time of the charter changes that I had been deemed, "the indispensable veteran" on the RAC, and would be kept on "for continuity". I reflected on the fact that VA has continued to spin away, whitewash, or simply ignore many of the most important recommendations of the RAC, including nearly all of the January 2012 Gulf War Illness Research Strategic Plan.
I made the very difficult and personal decision that I would not stay in light of VA's gutting of the RAC charter, and that what was truly important was not staying on a neutered RAC "for continuity" as VA wished for me to do, but in continuing to do whatever I could to help work towards ensuring that Gulf War veterans' needs are met -- and to date, VA had ignored (and still does) nearly all of the RAC's recommendations on how to do this. At the June 2013 meeting, I announced that I was resigning in protest, and I tried to make it clear that I didn't want to serve on an advisory committee whose advice was simply being ignored by VA.
Some have tried to belittle the seriousness of the VA's dramatic changes to the RAC's charter, scope, and mission. The beginnings of the truly serious impact of those charter changes became clear to the public at this week's RAC meeting, when the RAC was forced to scrap a major, entire section of its forthcoming report that would have reviewed the effectiveness of federal Gulf War Illness research efforts, measured by the standard of improving ill Gulf War veterans' health and lives.
Some have even gone on to slanderously suggest that some RAC members were merely trying to hold onto their seats for reasons of personal prestige, suggesting, "there have always been term limits". To clarify, there have never been limits to how many successive terms a VA Secretary can appoint someone. Furthermore, all of our terms as RAC members had long expired, but VA staff kept requesting our presence in writing for each successive RAC meeting, while VA leadership continued to not be bothered by anything at all related to the RAC, from recommendations to appointments or reappointments. And to my knowledge, there was not a single RAC member who was doing anything to try to stay on any longer that invited by VA to do so.
When I hear such statements, I am appalled by the apparent lack of awareness of how seriously and selflessly virtually every RAC member in the last few years has taken their roles, and I'm angered at that the apparent aim of such ill-informed statements is directed at discrediting or otherwise hurting the incredibly dedicated people who have devoted so much of their selfless efforts to serving Gulf War veterans -- at the request of the VA -- through the RAC. Perhaps it has not been obvious how much additional time and effort virtually every RAC member, scientist and veteran alike, put into fulfilling the seriousness of their charge to help improve the health and lives of ill Gulf War veterans -- at the VA's request.
In contrast to the high ethical standard set by every one of the RAC members in seeking to push the federal government to develop effectives GWI treatments, what is unconscionable is that VA leaders and staff have failed to come even close to meeting that high standard. VA Secretary Eric Shinseki has failed to appear at even a single RAC meeting in the more than five years he's been in office, and has been entirely unresponsive to the RAC's written recommendations -- a far different VA Secretary on Gulf War health issues from all of his predecessors.
It's time VA leaders like Dr. Robert Jesse get serious about what needs to get done at VA for Gulf War veterans.
Wondering where to start?
1) The January 2012 version of the Gulf War Illness Research Strategic Plan, developed by a consensus of three advisory bodies including the NRAC, RAC, and Gulf War Steering Committee -- and a couple dozen scientists from inside and outside the VA. To date, VA has done little of what's in the plan, and rewrote and distorted the portion on how a new GWI case definition should be developed to meet their own plans to give it to a psych- and stress-focused IOM panel on "Chronic Multisymptom Illness" (CMI) that seeks to lump all multisymtom illness issues from all eras into one big pot. Imagine the potential of success in finding treatments then.... Next to zero. SEE: http://www1.va.gov/RAC-GWVI/
2) Written testimony submitted by 14 Gulf War veteran leaders. To date, there has been no response and no action. SEE: http://www.scribd.com/doc/
3) My most recent Congressional testimony from March 2013, with a long list of recommendations that included and built on the recommendations in #14, none yet heeded by VA. To date, there has been no response and no action. SEE: http://veterans.house.gov/
4) The June 10, 2013 letter from all the Gulf War veterans on the RAC to VA Secretary Shinseki, with a lot of history and recommendations, which built on #2 and #3 above. That letter didn't even merit the courtesy of a VA response, let alone any action on the substantive issues raised in that letter. SEE: http://www.scribd.com/doc/
5) The August 26, 2013 letter from Paul Sullivan and a dozen other Gulf War veteran leaders, many active in this Facebook group, to Dr. Robert Jesse, who was active and vocal in this week's RAC meeting. To date, there has been no response and no action. SEE: http://www.scribd.com/doc/
The RAC isn't about claims. It's not about health care delivery. Without property directed research aimed at genuinely monitoring GWV's health and GWI and other symptoms, and VA research aimed at solving what is going on the in brains, nervous systems, and bodies of GWI patients -- none of which VA is doing -- then all the claims information and changes to how health care is provided won't make much difference to anyone.
The RAC is about developing treatments for GWI and any other GW health condition through appropriate *research*, and providing epidemiological monitoring of health outcomes -- including death -- in Gulf War veterans. The VA continues to fail miserably on both of those tasks. When you hear about advances in research treatment, like from Dr. Nancy Klimas, it's because a handful of RAC members worked with our friends in Congress to create the GWI CDMRP, and work hard with grassroots veterans and other supporters each and every year -- battling VA and its allies in DoD -- to ensure it is funded again each year.
For example, ALS has been shown to have been double the rate in GWV's in the early years after the 1991 Gulf War, and in a much younger population. But to date, "treatments" for ALS only prolong life on average by an additional 4 months in the invariably terminal disease. So, it's all well and good to try to make ALS patients feel "more comfortable" as they're dying a horrible death, but what they really want are *proven effective* treatments that will cure, or at least dramatically slow the course of that disease. To date, that doesn't exist -- only palliative care that tries to make them "more comfortable" as they're dying.
The same goes for GWI. What VA mainly has is palliative care, and band-aids for the symptoms. There are no proven effective treatments yet, though through the GWI CDMRP that work is finally progressing, much of it through animal models which if successful will only generate treatments years from now.
So in other words, I'm pretty firmly of the belief that spending time praising VA for care delivery models or disseminating claims information is pretty far from the former mission of the RAC before it's charter was recently gutted --- to ensure the development of effective treatments for GWI and to measure any VA success by that standard.
In short, if you're looking what needs to be done at VA, there are several items above that may be of use. The newsletter is an obvious and important communications tool to Gulf War veterans, but it's a tiny drop in the bucket of the real meat of what VA needs to fix before there's anything worth VA writing about to even put in that newsletter.
To date, nothing at VA has changed, and it's not because they haven't been given written best practice recommendations on what needs to be done.
There is only one standard by which VA should ever be judged on its research efforts: is VA providing proven effective treatments for Gulf War Illness to veterans who seek care at VA medical facilities?
It's time from Dr. Robert Jesse to respond to Gulf War veteran leaders' letter of August 26, 2013 -- not with words, but with substantive action to fix some of the issues raised in that letter.
Only then does he, or VA, deserve to begin to earn Gulf War veterans' trust.
Dear Ron ~ Anthony, other veterans, and I frequently met with VA on the subject of Gulf War illness for years. I even worked at VA, where I created GWVIS reports and served on the Secretary's Seamless Transition Task Force. For years, we veterans worked in a spirit of good faith. But now we are old and dying. VA has not acted in good faith toward us, except for the period from 2009 to 2012. Then VA re-wrote the recommendations; then VA cooked the books, according to Dr. Coughlin; then VA gutted the RAC. Since you are new to working on this issue in Washington, you may want to read the Congressional testimony, letters, and RAC reports to familiarize yourself with VA's tactics. VA often finds one or two veterans to turn against fellow veterans, as you have done with your jeremiad against Anthony. I ask you to stop attacking him and turn your efforts toward VA. The cost to VA to issue a newsletter or to placate you with a brief meeting are tiny, maybe a few dollars. Whereas, what we veteran advocate leaders press for is research, treatment, and benefits ~ all of these strongly opposed by Dr. Jesse and VA. Why? Because the true financial cost to care for us is in the billions of dollars per year. Don't be misled by the "professionalism" of Dr. Jesse. So long as he is not delivering research, treatment, and disability benefits, so long as he is not implementing the RAC recommendations made since 2002, then he is the main obstacle to progress for 250,000 ill Gulf War veterans. His actions are causing harm to hundreds of thousands of veterans. So turn your ire toward VA, not toward a fellow ill veteran.
In 1998, a handful of us Gulf War veterans, aided by a large grassroots movement, succeeded in getting the Persian Gulf War Veterans acts passed -- against the wishes of the VA. Those acts, bucked by VA for years in implementing them, made possible the Gulf War compensation program of today, free post-service healthcare for two years (later increased to five) without need for service-connection, the creation of the RAC gutted by the current Administration, and more.
Gulf War veterans' allies succeeded in getting Dr. Haley's research funded at $75 million over five years -- though opposed by VA. VA staff, taking advantage of the transition in power with the incoming Administration, succeeded in killing it, but not without important GWI research findings being published, advancing GWI’s understanding.
In 7 of the last 8 years (FY08 was a Congressional budget failure), a handful of us Gulf War veteran leaders and allies, aided by a renewed and growing grassroots movement, have succeeded in getting increasingly larger Congressional appropriations for the GWI CDMRP, and keeping it focused entirely on GWI treatments.
Nearly all the meaningful GWI research presented at RAC meetings and in the media, including Dr. Baraniuk's, Dr. Haley's, the consortia at Nova Southeastern and Boston University and so many others came out of those very hard-won efforts -- no thanks to VA staff or leadership. If it weren't for this program, there would be very little to write about in the new 2008-2013 RAC report.
This Spring, we'll begin emore as $15+ million in new treatment research -- outside the purview of failed VA staff -- is funded.
For those who are new to advocacy on behalf of Gulf War veterans, the tactics of a handful of Gulf War veteran leaders, aided by a fluctuating but now once again growing and strengthening grassroots movement, have succeeded in gaining every advance Gulf War veterans have ever gotten, often at the strenuous opposition of the VA.
Successes? There have been no shortage of successes, which have benefited hundreds of thousands of Gulf War veterans. While we still don’t have effective treatments, if it weren’t for the CDMRP, there wouldn’t even be hope for any. Had VA staff been doing their jobs, and were present VA leadership listening or doing their jobs, there have been no shortage of collaborative opportunities, which still exist.
When working closely and amicably with VA staff on the Gulf War Illness Research Strategic Plan broke down only *after* a consensus of *three* advisory committees created the plan and VA staff unilaterally and in bad faith gutted it, it became clear that VA staff were never honest brokers and have no intention on allowing a true research agenda aimed at treatments or adequate epidemiological surveillance.
If Gulf War veterans had sat back and wait for VA staff to do the right thing, we would've had nothing -- no 3.317 claims, no process for presumptives (however flawed that might still be), no presumptives at all... no free healthcare for newly discharged veterans not yet service-connected... no RAC... no GWI CDMRP-funded treatment research... Successes? Virtually every benefit that Gulf War veterans have gotten is due to legislative advocacy forcing VA to do what it resists doing.
The political appointees at VA are big boys and girls, they know what needs to be done and should do it before legislation forces them to do much more than they would like. What's new is that this Administration has sided with problematic VA staff instead of Gulf War veterans, for the first time since the implementation of the RAC.
And, what's truly unfortunate is that Shinseki is asleep at the switch. He could've prevented the VA staff's gutting of the RAC charter to neuter the RAC. He still could fix it if it weren't a government more worried about PR then policies that help veterans. Instead, he doesn't come to RAC meetings and doesn't take action on RAC recommendations, veterans recommendations through the Federal Register public comment process or Gulf War Task Force reports, Congressional testimony, or anything else. If they want a different view from Gulf War veterans, they know what they need to do to earn it. But instead, they are consumed by concerns about public perception but don't want to do the necessary work to earn favorable public perception.
More negative national press and Congressional scrutiny for VA is on the way, and the present VA leaders will have earned it by failing to hold problematic VA staff accountable.
The recommendations are in writing and public, and the present VA leaders, and those who seek to be among them, will be held accountable for their actions -- by Congress, the media, the VSO's,the public... and history... which has up to this point and likely will have to continue to be made by Gulf War veteran advocates succeeding with our friends in Congress to force VA to do what it should but fails to do.
Stay tuned, and strap on your seat belts, because it's going to be an eventful year -- with or without VA leaders willingly doing their jobs.
"Power concedes nothing without a demand. It never did and it never will."
-Frederick Douglass, African-American abolitionist leader and social reformer, orator, writer and statesman.
"Change to the VA takes time...." - Ronald Brown
Mr. Brown, I think 23 years pretty much has your performance standard covered. I'm disappointed that a fellow Gulf War Veteran would stand in public defense of what quite obviously is piss - poor performance and lack of follow through by the VA. To put it in terms of something you might better understand, imagine calling in a fire support mission only to be told that they'll get back to you as their schedule permits. 23 years of waiting is more than enough, even for this dumb old Jarhead.
David K Winnett, Jr.
CAPTAIN, USMC (Ret.)
Ron. Your note above alleges that, "Constantly bashing them has gotten how much response from them?" I would ask, "Did asking VA nicely accomplish anything?" The answer is that only lawsuits, news coverage, Congressional hearings, and laws have forced VA to do what the agency was designed to do: namely, provide care and benefits to our veterans. Regarding Dr. Jesse, I met Dr. Jesse for the first time in the Summer of 2013 at the IOM hearing. He invited me to lunch. I had lunch with him. I played nice. He response during lunch was to ask me repeatedly how I would help him VA improve VA's image. My repeated response was for VA to start research, provide treatments, and provide benefits. He offered nothing in terms of research, treatments, or benefits. I believe Dr. Jesse and VA want to use you to "play nice" so that VA can buy more time so more of us die. So long as you act nice, VA can say they are working with veterans without delivering services. Until Dr. Jesse and the Secretary start delivering on our key needs (research, treatment, and benefits), we must continue to demand change. This isn't bashing VA. This is veterans demanding what is justly ours under the law and under common human decency. We haven't called them nasty names. We haven't protested. We never use violence. Thus, we aren't bashing VA. We are simply describing the laws and VA's failures. Paul.
The laws above cited by Anthony were accomplished by the NGWRC. 1) Two years of free VA medical care after discharge. 2) Undiagnosed illness benefits. 3) Fibromyalgia, Chronic Fatigue, Bowel Syndrome. 4) Five years of free VA care after discharge. 5) ALS benefits. 6) IOM reports. 7) Creating the RAC. 8) Dozens of Congressional oversight hearings. 9) Hundreds of news articles, LIFE magazine, "60 Minutes," and more. At the time, I was honored to be the Executive Director and work closely with Anthony Hardie.
I was truly dumb struck with the servant remarks, unprofessional remarks to a fellow vet on the phone, and the fake limps and struts. 1) The RAC meeting is the inappropriate platform to roll out the Forgotten Warrior Project or any thing else pertaining to the NGWRC, it hasn't been able to find its way to the latrine for years past 2) Personal Bios were presented in the beginning. 3) Yes, we first line users and plank-holders will continue to advocate for our fellow brothers and sisters long after the NGWRC is gone.
I have more in this than most as I helped to develope the Army's primary leadership course which it seems that 2 of you never attended. It really saddens me that those values were not carried into both of your civilian lives. I am a professional soldier then and now with 27 years devoted to the Infantry. With 25 years of developing young, dynamic, and courageous leaders that where instilled with a sense of purpose and devotion to self, others and country. I would like to invoke one thing, please remember this "Lead with Courage, Courage leads Honor". Yesterday I did witness a true case of a self-centered, self-promotion with no real leadership.
Thank you for your leadership as I m truly proud that some had retained the leadership traits in their civilian life that I and hundreds of other NCO's had imparted into their young soldiers. It is truly saddening to see the NGWRC denigrated into the organization that it now has become.
Why does the mouth organ of the NGWRC keep removing his statements as these should be public record of the organization? Flip flopping is NOT a trait of leadership!
First, definition of slander is me attacking a person, sorry I am not attacking you the person but your ideology and what you so call helping me (as a Gulf War Veteran). You personally have a big heart and want to do the right thing I can complement you for that, but DO NOT include me with your ideas of helping veterans of the Gulf War. Now that you are public figure in a public organization you need to prepare for harsh criticism by the public.
I have highlighted two items in your speech; both rub me the wrong way. To address the first one, the idea of helping the VA has not worked in our history. The RAC has recommended this on several occasions to work with PCP is to understand our troubles. To date this had not been accomplished, but rather extensively used as a Public Relations campaign by the VA. I did my own claim, successfully used RESEARCH reports to educate my PCP, and won that battle with great results between MY PCP and ME. I was my own advocate and it works, are there those out there who cannot help themselves, I must say yes, but with my individual efforts in advocacy went beyond my personal gain and has helped other Gulf War veterans. My PCP now understands our struggles so he may understand others having the same issues. IT WORKS FOR ALL.
Second, the primary mission of the VA RAC GWI is our most helpful ally in the fight to understand our illnesses, their mission is about RESEARCH, and what it has FOUND that damages our metabolism and health. To say "why do we spend millions upon millions of dollars on research if the results are not read by our medical professionals" is knocking the very heart out of the committee committed to dealing with how research is finding results. No the research you go to until the article is published, peer reviewed by others, and then follow on research is done cannot be used by doctors. Since research is just that "research" ethically and for safety reasons cannot be used to conduct any treatment or guidelines for physicians. This is covered by Health and Human Services agency (another government agency) under the Institutional Review Boards (IRB) of physicians and scientist for human research. As was explained to you as a member in attendance at the RAC meeting you should already know this.
We need the research to make comparative studies to find absolute answers of the damage done, just like in cancer, then effective treatments can start giving us a better "quality of life" back. If you could have talked to some of the researchers, they would tell you treatments are on our horizon from what they have learned. However, government needs first the cause (through research), then suggestions of what treatments might work (another area of research), and then approved through trials in conjunction with not only the IRB but also through the guidelines of FDA.
I hope you now understand what research is doing for us and why we need to spend the money on continued efforts. What you can do instead of downplaying the VA RAC committee and what they do for us is simple. Support their efforts to get the recommendations even though the VA is ignoring the recommendations. Using your newly appointed position, you can support veterans through publishing the possible good clinical research in writing through a review letter for those veterans that do not use the internet. Another well-intended effort is to support fundraising that might pay way for that one veteran or two to get travel to research facilities some need this more than others might, so they researchers can offer the data needed.
Ron Brown, why is it the NGWRC (which seems to mean you and its owner) are so willing to make nice with the VA, but you continually come into the FaceBook forums and here onto a fellow Gulf War Veteran's website and constantly make trouble by making accusations, arguing, and otherwise not making nice? Aren't you getting at least half the equation wrong here?
Applause is generally just being respectful. Sometimes applause is just showing thanks for a speaker finally shutting up. If you believe applause means people agree with you, and if you were memorizing who applauded you, you were concentrating on the wrong things.
Thank you fellow veterans for continuing to work so hard on this over so many years. These last several months have truly shown some disgraceful actions by the VA.
In other areas, I see there has been little change.
Thanks for this really informative post and comments. I also enjoyed watching some of your Congressional testimony on youtube. Thank you for standing up for GW Vets. You guys are heroes and it is criminal what VA has and is doing to you.
I am not a vet (my father is a vet, Navy Commander). I used to work as a lawyer and have had ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) for 10 years. I have participated in advocacy for my disease as I am able, but our advocacy has been much less organized and effective than yours. That is changing. A major catalyst for that change is Health and Human Services' contract with the Institute of Medicine to redefine ME/CFS by non-experts. They saw how well the IoM screwed your community over with its redefinition efforts and are now trying the same thing on us. In fact, reading your post, it is incredible the similarity of tactics VA uses against you and HHS uses against us and against people with Lyme (I also have Lyme).
I would like to propose that our communities work more together. With my limited knowledge of GWI, I believe GWI could be understood as a subset of ME/CFS, and at the least, they are highly related so that more good research into one disease will help the understanding of the other. Further, there is strength in numbers, very especially in political coalitions. There are a huge number of non-GWI ME/CFS patients in the US- about 800,000.
Advocates with ME/CFS have become more aware of these parallels recently and have begun to support you in the limited ways that are now practicable to us, for example I write supportive comments on and spread by social media the excellent USA Today articles. That is not much, but if we coordinate with you, we will be able to take more effective action for you.
Currently we are fighting tooth and nail to stop the IoM ME/CFS study. We could very much use your community's help with simple advocacy actions, which of course would be reciprocated.
I am an independent advocate, not representing any organization, much like almost all of our advocates- as I said, we are at a less organized stage than your community is. Independent advocates like me are increasing working together in a coordinated fashion.
I know this is a lot to consider out of the blue. But I hope you do so. And I hope to hear from you. I believe you have access to my email address through this comment. If not, you may private message me on the Phoenixrising.me patient forums. My username is justinreilly.
First, I was making a reply based on your comment, which you have conveniently deleted, about how you were applauded at the meeting. It had nothing to do with being at the meeting, although I did hear the polite applause most all the speakers received. So I can criticize your deleted comment without being at the meeting, and because I was at the meeting virtually.
I was on the phone listening to the entire meeting because as I suffer with GWI, and I was physically unable to make the trip. If you think that somehow makes me less of an advocate than you, you are sadly mistaken. I advocate for ill Gulf War veterans frequently with members of Congress, with contacts in the Department of Defense, the Veterans Administration, the Dept of Health and Human Services, the Centers for Disease Control and Prevention, the National Institutes of Health, and many others. I serve on the Board of Directors for an organization that supports and advocates for all neuro-endocrine-immune disorders (NEIDs), including Gulf War Illness. And our organization charges no membership fees and all officers and board members are volunteers who receive no salary or payments from the organization.
So you may wish to think before you open your mouth and spout off to me. Do not be disrespectful to me in a message and then sign it "respectfully." It demonstrates your insincerity and sarcasm and just makes you seem a bigger ass than I might have thought you just from your message alone.
How can I be "misinformed" from reading your own words? Are you misinforming me? Are you saying the wrong things here and in the Facebook groups just to misinform me and others?
You clearly stated above you and the NGRWC, which I assume to mean the owner, who I thought was the only one actually appointed to the RAC, want to try the approach of not being confrontational with the VA, yet you come here to Anthony Hardie's website and proceed to be confrontational with everyone on here, starting with Anthony.
So how am I truly misinformed, Ronald? Please explain it to me.
I forgot, I also worked my behind off on the GWIRP CDMRP panel just last month reviewing research that will go forward to the Integration Panel Anthony sits on. That's a part of my advocacy as well.
And I wanted to apologize for saying insincerity and sarcasm could make you (or anyone) "seem like a bigger ass" when what I meant to say was "seem like a bigger a$$."
Justin, many veterans with GWI also suffer from CFS (the VA doesn't recognize ME) and it is one of the presumptive conditions within GWI.
You may know the ME/CFS community is still somewhat divided about the IOM committee working on the diagnostic criteria for ME/CFS. The fact is, the contract was let sometime back, the IOM is already holding meetings, and HHS is not going to stop the contract now. You may not know the final list of committee members actually has more ME/CFS experts than non-experts. Out of 15 members, 8 of them have experience treating ME/CFS patients or researching ME/CFS. At least two of the non-experts have people in their lives who have been touched by ME/CFS. So the committee is not flying nearly as blind as our GWI IOM committees have been.
I am on the Board of Directors for an ME/CFS (and FM, Chronic Lyme Disease, GWI, MCS, and other NEIDs) organization that has been advocating for patients and working with other ME/CFS groups to try and put forward a united front, although that's sometimes a challenge. If you'd like to reach me to discuss this further, use ddhatfield at gmail dot com.
Here is the 5 dollar question for Dr. Dave, Anthony, and Paul. What can be done to increase the accountability of the VA? It has been reported for years and tears and years that the VA will get mandates from congress only to see the VA plainly re-right these mandates to suit them. We even had a whistleblower for God's sake come forward and testify in front of congress that these VA guys are not only not playing by the rules they are blatantly breaking them, yet nothing seems to happen to these "guys and gals" in charge? Just how the hell can this be addressed?
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