The IOMperor Has No Clothes: IOM Admits Lack of Expertise

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!

According to Binns “[i]t is hardly surprising that based on a literature review alone, the committee was not able to develop a new case definition … this fruitless process cost VA $850,000.

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?

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24 Responses to The IOMperor Has No Clothes: IOM Admits Lack of Expertise

  1. CC says:

    OMG! This just keeps getting worse. What’s next? ARGH! You’re incredible to be able to read this garbage and still carry on speaking rationally! I sure know I couldn’t. Go for it! And LMK if you need anything!

  2. susanna says:

    At least, it was very good of Dr Shine to own up to this. How many levels of irresponsibility were there? too hard to count! Who were the members of this GWS group who undertook this task, knowing they had no expertise? It undermines you faith in the whole business of medicine!

  3. Ess says:

    Please count me in as confirming that I remain utterly convinced as to the complete lack of competency and expertise for the IOM to re/define ME/CFS. This ‘complex’ task ‘set up’ for the IOM committee to define ME/CFS is COMPLETELY out of context for the composition of said committee, and as such the result will most certainly be ‘lacking’ at best; at the other end of the spectrum, horrifically destructive and HARMFUL to the ME/CFS people/patient group.

    It’s ‘high time’ and loooong overdue for HHS,NIH,CDC et al to WAKE UP–RISE AND SHINE and do right by the Gulf War Illness sufferers and ME/CFS sufferers. Make all these years and decades of INjustice right–the time is N O W !!!

  4. mjill says:

    Am I the only one who thinks that the IOM should refund the $850,000 that they were paid for this? If you fail at completing the task you were paid to do…..you don’t get paid….right?

  5. Ted Smith says:

    You cannot “define” MECFS except to say it is TWO things, not one. ME stands for myalgic encephalomyelitis, which means “muscle pain” (myalgic) and “inflammation of the brain and spinal cord” (the rest.)
    CFS stands for a syndrome – ME is an illness.
    The only reason to join the two together is explained by Dr Charles Shepherd, medical advisor to the UK’s ME Association, who says the “CFS” part is for doctors who do not believe ME actually exists (sic). It is, Shepherd explains, a “compromise” to keep such people happy.
    You cannot define a “compromise” as a medical condition.
    Define ME – define CFS if you must – but don’t try to define two opposing ideas at the same time.
    It can’t be done.

  6. The Walking Dead says:

    I think its over for IOM, maybe while the heat is on we should continue to put pressure on the Committee. IOM knows they are not up to the job, unless someone is forcing them, I think they will resign. It does seem the committee was pushing for CCC. The sad thing is while were spending time fighting this, which is necessary, were not able to focus on treatment. We have got to demand that Ampligen get passed!! We deserve treatment!!!

    • We definitely have to keep the pressure on. It works. Wonder what it’ll do to the careers of those on the committee who had to admit they weren’t up to the task.

      Re “our” “study,” we have much up
      our sleeves yet. And we are watching every single step more than they know, closed meetings or not.

      This is far from over. Over for the IOM maybe.

      • The Walking Dead says:

        They might can save face, by admitting they were not qualified to define GWI, this gives them the perfect seg way to say the same about ME/CFS. In fact, I have more respect for them admitting that GWI was too much, because now the travesty of that can been challenged, and changed. The money is probably all a loss.

  7. Caledonia says:

    I’m confused. I thought they did come up with a definition, a new name “CMI” and recommendations to use CBT, GET and anti-depressants for treatment. Can somebody explain?

  8. Kristine says:

    Oh, how it adds to the anxiety we already have!

  9. Kathryn says:

    Have you seen the CAA reply to this fiasco?

    http://solvecfs.org/tale-of-two-iom-committees/

    • CAA in major damage-control mode since Vernon was on latest IOM report. Good attempt to spin the GWI disaster, but not convincing.

      Their point that it was the literature’s fault, the implication being that ME/CFS will be different, is ludicrous given that GWI gets quite a bit more gov’t money than we do. If anything, it’ll be harder to come up with a decent definition for ME/CFS.

      What I find if interest is that they had this relatively long statement ready to go yesterday.

  10. How refreshing to find someone admitting mistakes were made! I wonder if this will really make any difference in the findings (or completion) of the appointed task of the IOM?

  11. Astro says:

    $850,000 for the GWI/CMI study, $1,000,000 for the ME/CFS study, Please pardon my cynicism but, this song by “The Eagles……. Take the money and run ” springs to mind…… :) http://www.youtube.com/watch?v=68nrURpTDOM

  12. akrasia says:

    The IOM emperor has no clothes therefore IOM nothing

  13. Kathy D. says:

    The emperor has no clothes? Or is it like the Wizard of Oz? A big voice, but behind the screen is one person who is a phony, but intimidates everyone — the great and powerful Oz.
    Too bad the IOM and the HHS can do harm to our patient community, as well as others.
    Incompetency or more than that?
    I think the government’s goals are to curtail Medicare, Medicaid and Federal Disability benefits, in addition to whatever political motives they have. Also, they are helping the insurance companies out if they don’t recognize our disease, fewer payouts for health care and disability benefits.
    However, there is also politics in this mess.

  14. Ess says:

    ‘Incompetency’ or more than that?’ Hmmmmm . . . Don’t have to spend much time pondering that do we. Seems to be MUCH more than incompetency, doesn’t it–a definite UNtowards agenda coming from the powers that be within the HHS and affiliations.

    In all of these acts against the ME/CFS patient community our lives are being destroyed.THEY are destroying our lives and killing us LEAVING us very ill and house bound in non-existent lives–and all the while the debilitating disease of ME/CFS continues to spread.

    Parallels can be easily drawn with the themes of antagonist/protagonist, good and bad AND evil/darkness VS. goodness in fairy tale land as has been mentioned in just a few (The Emperor Has No Clothes, Alice in Wonderland and Wizard of Oz; I’ve also written about the latter two.)

    BUT this is real life–human life–our lives that we are dealing with in this story, this nightmare in ME/CFS Land.

    When the truth is exposed, as it will be, perhaps comparisons will be drawn to the likes of real life conspiracies and cover-ups (politics–public health–insurance companies) such as Water Gate and Erin Brockowich?

    Politics, big business, big bucks and insurance companies are deemed to be of more importance and value than human life . . . our lives. This is a shocking reality/nightmare to find one’s self caught up in as we try to navigate in debilitating health crisis.

    Nonetheless, we are on the cusp of getting to our JUSTICE for ME/CFS. Thank you to all that are helping us :)

  15. Reblogged this on Sunshinebright and commented:
    Important update re IOM (Institute of Medicine’s lack of expertise admission.

  16. Wessely as reviewer? Really?!!!!!! Whatever were they thinking? Shocking it certainly is. After thirty five years I still feel shocked by the unreality of it all, politically and medically speaking. Maybe we are just creeping forward at last though, in spite of IOM, which is much better than the backwards trajectory we appeared to on for years. I am so grateful to all those who write and campaign. I am often too neurologically challenged to order my thoughts.

  17. Rivka says:

    i’m late to the game here, but thank you so much for writing this blog and being a strong advocate for all of us. — rivka

  18. Pingback: IOM Meeting: Open? Participate At Your Own Risk | Thoughts About M.E.

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