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Erica Verillo - Making Sense of the IOM Controversy

Nielk

Senior Member
Messages
6,970
http://www.prohealth.com/library/showarticle.cfm?libid=18457#discuss

Excerpt:

You can’t get there from here

Like the punchline of an old joke, the real question is whether we can get there from here. Can the IOM contract really open doors? Will HHS adopt a precise definition of ME/CFS that requires the hallmark symptom of PEM? Will the experts on the IOM panel be real experts, rather than people who happen to have connections with the IOM? Can the ME/CFS community exert its influence to make sure the IOM definition is conducive to better research, diagnosis and treatment?

These are big questions, and the answer to all of them is "no."

History has shown us that we cannot change HHS "from within." Government institutions have a vested interest in maintaining the staus quo for the simple reason that advancement within those institutions is predicated on not rocking the boat. Independent thinking, especially when it contradicts the received wisdom of people higher up in the chain of command, is actively discouraged in government service. In the case of ME/CFS, the status quo is comprised of lack of funding for ME/CFS research, a dismissive attitude towards the illness (couched in kinder, gentler "discussions"), the obstruction of the approval of drugs which might actually be of benefit to the sickest members of our community (Ampligen), and the perpetuation of the myth that the illness is fundamentally psychogenic and can be mitigated through therapy and exercise.

There is a lot at stake here, much more than meets the eye. So, regardless of the “friendly fire,” online arguments, and heated exchanges coming out of this battle, it is absolutely essential that members of the ME/CFS community stay clear and rational.

A redefinition of CFS as “chronic multi-system illness,” or any other meaningless concatenation, will not improve upon the current definition, it will not lead to effective treatment, it will not increase funding for research, and it will not lead to acceptance by the medical community. Instead, it will usher in the widespread dismissal of ME/CFS as an organic illness, and cause a halt in meaningful research. As the experts have rightly pointed out, “this effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable. ME/CFS patients who have been disabled for decades by this devastating disease need to see the field move forward and there is no time to waste.”
 

Ember

Senior Member
Messages
2,115
Erica's fine article needed some proofreading. On first reading, I noted that Gulf War Illness has been defined as “chronic multi-symptom illness,” that the National Alliance for ME sent letters of support and that Dr. Bateman served on the CAA's scientific board. In addition, I don't believe that Dr. Vernon was on the IOM panel that defined Gulf War Illness as “chronic multi-system [sic] illness.” I hope that such errors won't distract from the article's thrust.
 
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Ecoclimber

Senior Member
Messages
1,011
Erica's fine article needed some proofreading. On first reading, I noted that Gulf War Illness has been defined as “chronic multi-symptom illness,” that the National Alliance for ME sent letters of support and that Dr. Bateman served on the CAA's scientific board. In addition, I don't believe that Dr. Vernon was on the IOM panel that defined Gulf War Illness as “chronic multi-system [sic] illness.” I hope that such errors won't distract from the article's thrust.

I am not sure specifically what issues above that you find in error?

https://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49546
 

Ember

Senior Member
Messages
2,115
I am not sure specifically what issues above that you find in error?
Please correct me if I'm wrong, but I don't believe that Gulf War Illness has been called “chronic multi-system illness” or that the National Advocacy Alliance for ME (NAAME) sent a letter of support or that Dr. Bateman currently serves on the CAA's scientific board or that Dr. Vernon was on the IOM panel earlier when it defined Gulf War Illness as “chronic multi-system [sic] illness.”
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
Please correct me if I'm wrong, but I don't believe that Gulf War Illness has been called “chronic multi-system illness” or that the National Advocacy Alliance for ME (NAAME) sent a letter of support or that Dr. Bateman currently serves on the CAA's scientific board or that Dr. Vernon was on the IOM panel earlier when it defined Gulf War Illness as “chronic multi-system [sic] illness.”

See the first sentence here: http://www.nap.edu/openbook.php?record_id=13539&page=11