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(my bold)At its first meeting, presenters before a new IOM "treatments" panel diverged radically from both the Congressional authorizing language and established science. The panel was charged by VA to conduct a literature review rather than to consult with knowledgeable medical practitioners experienced in treating ill Gulf war veterans. And nearly all of the first presenters focused on "stress-as-cause", psychological, and psychosomatic issues – all debunked years ago.
For example, one of the stress-as-cause presenters to the IOM “treatments” committee said, “Stress has been indicated as a factor in Gulf War Illness,” citing three studies as reference. I immediately recognized one of cited studies, as its principal investigator had presented her findings to the RAC on which I serve, noting that what she found in ill Gulf War veterans was distinct from and not PTSD. The researcher’s actual conclusions were: “Despite the overlap of chronic unexplained health symptoms and PTSD in GWV, these symptom constellations appear to be biologically distinct.” This blatant mischaracterization of the research conclusions was not unique. And similar to other presenters that day, this presenter focused the second half of his talk on “stress management via relaxation-response (RR) therapies” – a mere band-aid for suffering veterans. The ill Gulf War veterans who called in to listen to the panel's two public meetings were of course outraged.
A written request by three of us veterans to the IOM President for a copy of the VA-IOM contract and the presenter selection criteria was minimized and never fulfilled
I just watched the video again. It's well worth watching for any one interested in the IOM contact. If you don't want to watch the whole video then watch the section about the IOM which starts at 5.00. He says that he has been told that the IOM's approach for creating a diagnostic criteria (via a review of the literature) was unprecedented, and that the VA had been instructed by law to focus on expert physicians involved in the illness and had ignored this. And he pointed out that there was a lack of good literature because the field had been starved of good research. As others have said in this thread it all sounds very familiar! And there are uncanny parallels between the wider work of the VA and what the ME community has experienced over the years.This is worth a view if you have not done so yet in order to better understand the stakes of the IOM contract.
I just watched the video again. It's well worth watching for any one interested in the IOM contact. If you don't want to watch the whole video then watch the section about the IOM which starts at 5.00. He says that he has been told that the IOM's approach for creating a diagnostic criteria (a review of the literature) was unprecedented, and that the VA had been instructed by law to focus on expert physicians involved in the illness and had ignored this. And he pointed out that there was a lack of good literature because the field had been starved of good research. As others have said in this thread it all sounds very familiar! And there are uncanny parallels between the wider work of the VA and what the ME community has experienced over the years.
Thanks Russell. That article links to two other interesting articles in relation to the difficulties (political and medical) that the Gulf War Illness patient community experiences:Interesting piece from Forbes, Bob, I don't know if you'd read. From June. Here.