Apparently, Kenneth Shine, former president of the Institute of Medicine (IOM) and chair of the IOM committee that was tasked by the VA with the development of a case definition for Gulf War Illness, had a gut feeling about the outcome of the study. Shine stated last year that he “could not recall when the IOM was last charged with defining a disease.” Guess what: The IOM hadn’t developed a case definition then and–even though the report was released today–it still hasn’t! Wait! What? Well, at the price tag of $850,000, the IOM was “unable to develop a new consensus definition of CMI given the lack of uniform symptoms, the variety of symptoms, and the long onset and duration,” according to the report. That’s a big taxpayer “oops,” wouldn’t you say?
“The VA [had] asked IOM to develop a case definition for CMI as it pertains to the veteran population who served during the 1990-1991 Gulf War, as well as recommend appropriate terminology for referring to CMI.” The IOM simply couldn’t do it. In its report, it basically admitted to not having the required expertise.
Now, is everybody convinced about the IOM’s lack of expertise to define ME/CFS? A literature review by a majority of non-experts is as a flawed a process as one can imagine for the definition of an overwhelmingly complex disease, such as ME/CFS. It cannot be done competently. The latest IOM report makes it a point in a number of places to compare the complexity of GWI with that of ME/CFS. Expecting a different result from the IOM in the case of ME/CFS is the stuff Harry Potter books are made of (no offense to R. K. Rowling). The only difference will be that the taxpayer bill, at $1million, will be even higher.
Jim Binns, chair of the Research Advisory Committee on Gulf War Veterans’ Illnesses, a FACA committee, like CFSAC, commented, “The conclusions of the report show that it was a waste of money.” He further stated, “The committee never had the expertise or the process to do a case definition. It’s good they didn’t do one.” No kidding!
Remember the following right-on quote by Byron Hyde, renowned ME/CFS expert from Canada?
Definitions are not diseases, they are often simply the best descriptions that physicians and researchers can offer, with their always imperfect knowledge, to describe a disease. Good definitions are good because they correspond closely to the disease state being described. It is thus important that those that attempt to define any disease or illness … have long term clinical experience with patients with this illness. There is simply no place for the bureaucrat in defining illness. All definition of epidemic or infectious illness must be based upon persistent clinical examination of the afflicted patient, an understanding and exploration of the environmental factors producing that illness, and pathophysiological examination of tissue from those patients. For similar reasons, I believe that the inclusion of psychiatrists in the defining of an epidemic and obviously disease of infectious origin, simply muddies the water for any serious understanding of that disease. (emphasis added)
It takes expert clinicians to define ME/CFS. The IOM ME/CFS committee consisting of a majority of non-experts does not have the required expertise, just like the IOM GWI committee didn’t. The emperor just doesn’t have any clothes, plain and simple.
I have not reviewed the report in detail, but one thing that struck me on a cursory review was that the report seemed quite repetitive and, one might say, without even an overlay of the kind professionalism that one would expect from an institution that is being touted by HHS as one with utmost credibility.
Speaking of credibility, Simon Wessely, arguably the most controversial figure in medicine and science of our time, reviewed the latest IOM report. Studies that Wessely co-authored are also cited on numerous occasions, so he basically reviewed and signed off on his own “research.” Even if Wessely were right with his psychobabble and pseudo science—and we all know he is not—I cannot imagine what could have possibly gone on in the minds of those who chose him as a reviewer. By doing so and allowing his name on the report, the IOM lost all credibility, whether it be due to indifference to the tremendous controversy surrounding Wessely or due to the lack of due diligence, i.e., ignorance of the controversy.
HHS, can you hear us now?