Chairman Binns opened with a welcome, and showing PowerPoint slides from the April 2009 IOM report showing Gulf War Illness as a unique diagnosis affecting 250,000 veterans of the 1991 Gulf War.
Dr. Buja, NRAC chair and chair of this meeting, then talked about the structure of the current document and his ideas on how best to proceed today.
Dr. Joel Kupersmith, VA ORD director, talked about having never seen this kind of effort before, and how relatively quickly it has gone.
Dr. Bobbie White spoke about the history of GWI science, and said from her work she sees GWI as essentially a chemically induced encephalopathy.
I spoke briefly as an ill Gulf War veteran and part of the target population, giving a history of Gulf War veteran's experiences of not having been listened to and our community's distrust, and covered the areas where this plan could be different. (Essentially, my article from a few days ago about this Strategic Plan). I tried to emphasize the need for treatments to improve GWV's health and lives, and the need for urgency in doing so.
Dr. Korn said he participated in two of the nine subcommittees, and noted that he recognizes that Gulf War veterans' illness is real, and are clearly suffering, and that he wanted everyone to know that all are very intently focused on getting this. "We want this to be fixed," he said.
The discussion has gone to the Treatments section of the report.
Dr. Korn asked the question, Since Gulf War veterans have all of these many of these symptoms, then are they not being given treatments for these symptoms?
Dr. Sullivan said that the treatment section working group recognized that treatments have been given to Gulf War veterans, but that it has really to date been about treating symptoms. "Our focus was not just on treatments and treating the symptoms, but we also tried to figure out ways to get at the mechanism" [underlying GWI].
Dr. Golomb said that Gulf War veterans are more likely to have adverse reaction to multiple drug therapy.
Dr. Korn questioned why VA isn't already doing a coordinating center to test these out, and why this isn't the mechanism: to develop a well controlled coordination of trying out therapies within the VA system and then gathering data from that. (essentially to know what works and what doesn't).
Dr. Barlow said that everything is essentially "anecdotal" to this point, and we need to know whether GW veterans are collectively more likely to know whether polytherapy is a problem and may be making veterans worse. Well controlled studies of existing therapies and whether they're beneficial.
Dr. Steele said the problem is no data. "People are being treated every day, we don't know where it's leading them." [[My clarification: the issue is how I summarized Dr. Steele's statement. Here'a better attempt: Science works by collaboration. Scientists have their study results published in journals that are peer reviewed, thereby opening them up for scrutiny and others to further advance the scientist. All of us individual veterans who have tried medications that worked or didn't work, or who discovered (the hard way) that multi-pharmaco-therapy makes us worse, are all what science calls "anecdotal" -- no control group, no placebos, no objective bio/chemical measurements -- those things would constitute "data" that the body of science could then use to further advance the general scientific knowlege of what works and what doesn't, and most importantly, "WHY". Hope that helps clarify. Any misunderstanding about what this means is my fault for not writing it better, not Dr. Steele's fault -- she's as "in our camp" as you can get, and one of our heroes, in my opinion]
Dr. Sullivan: this is something that can be done NOW.
There's now discussion about whether a national center for GWI would be helpful. Some arguing in favor.
Dr. Steele said there's just no data, that individual patients have been given treatments, but data on its effectiveness has not been tried.
Clarification between Dr. Korn and Dr. Steele about treatments being studied: "Why for the first time, 16 years down the road, have we still not tried this?" asked Dr. Korn.
Discussion now on why the effectiveness of treatments has not yet been studied and measured.
Stigmatization of GWI early on. VA only funds VA investigators. Focus has been on individual researchers, not collaborative inter-institutional efforts. Not a lot of response to VA internal RFA's, so we need to find a way to get the message out broader, like we are with this plan, and to ensure there's enough partnering with the outside the VA research community on these efforts.
Dr. Melling said there's a philosophical difference between investigator-initiated research and directed research. Arguing for the directed philosophy, we wouldn't have succeeded with the Manhattan Project if we hadn't directed all those researchers to throw in their efforts.
Coordinating committee did attempt some prioritization among the 10 elements. #4 (smoking cessation), #5 (complementary medicine), #6 (cognitive rehab) would not be prioritized.
Discussion on the relative importance of these. Dr. Buja noted that the committee found that many of these things are "fantastically important" but they questioned whether they should be prioritized from very limited amounts of money for Gulf War veteran health.
Vic K. (VA ORD, our new scientific lead on GWI) -- VA has been primarily investigator-driven.
Consensus agreement that there should be prioritization of funding of treatments.
Mr. Binns -- VA should shift its top-down directed efforts at treatments.