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Dr. Enlander's comments at the IoM delivered by Jay Spero

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Jan 28, 2014.

  1. Nielk

    Nielk

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    I was honored and pleased to have been asked to sign what has become known as the 'Experts' Letter,' where several dozen colleagues have expressed opposition to possibly altering or redefining the criteria of M.E. & C.F.S. by virtue of the pending IOM contract. If it was the case that there was opposition to the existing Canadian Consensus Criteria, then open discussion about these criteria would be more useful than closed door redefinition by a panel where the majority are not known to be familiar with the disease, Myalgic Encephalomyelitis.

    At present, the Canadian Consensus Criteria are used by a majority of experts who diagnose and treat this disease; they adhere to the concepts defined by Dr. Melvin Ramsay, who helped pioneer research in this disease, in contemporary clinical settings. Were discussion and debate even necessary, one million dollars could still have been saved--a not insignificant percentage of NIH research funding dollars in this area. Given the paucity of funds allowed for research and study of what we know as Chronic Fatigue Syndrome, it seems, with all due respect, to be a shameful waste of money.

    Open discussion on the IOM method of approach has not been made available; we can only hold out hope that the result is closer to one of the more strictly defined criteria. However, given all we have seen recently, marvelously chronicled by several patient-bloggers (notably, Jeannette Burmeister, Jen Spotila, and Erica Verrillo), it seems inevitable that any preference given to the "Evidence Base," may produce a set of loose criteria. In this area, where the 'evidence' has long been grossly distorted, and to date has produced a flawed, inaccurate model of this very serious physical disease, such criteria may well describe other conditions or disease models that are, simply put, not the disease described by Ramsay.

    A group of us are forming the "Academy of M.E. & C.F.S. Physicians," composed of experienced clinicians and researchers familiar with the disease, M.E., and related conditions. The Academy will be an Independent resource for government, corporate and private groups to derive information relating to the latest research, diagnostic methods and treatment approaches. Training of young physicians in this area will be of prime importance.

    Dictatorial direction will continue to do a grave disservice to a long-suffering patient community. My patients deserve better, as does anyone suffering from this horrible disease, and I must register my protest at this sadly unnecessary contract.

    Derek Enlander, M.D.
    New York M.E. and C.F.S. Center
    860 Fifth Avenue, New York 10065
    (212) 794-2000
     
    Last edited: Jan 30, 2014
    Iquitos, heapsreal, Sushi and 13 others like this.
  2. Nielk

    Nielk

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    This is such a strong point! If HHS had any difficulty with the present CCC, all they had to do was put together a workshop of experts to discuss this and improve on it. That is exactly what the CFSAC 2012 recommendation called for.

    For HHS to have bought this IoM study for a review of outdated, criteria that never worked is lunacy!
     
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  3. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Heaven waits for that man, and Hell for the grey-souled, cowardly bureaucrats and treacherous physicians who have betrayed millions of sick people time and time again.
     
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  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I hope Heaven has a long wait - we need Dr E to be around for as long as possible!
     
  5. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Yeah! :balloons::):balloons::thumbsup::balloons:
     
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  6. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    The only way to win is NOT TO PLAY THEIR GAME, it's rigged we will NEVER win until all those "old guard" swine are *dead*
    hence Englander is right :)

    ~Max Planck
     
  7. alex3619

    alex3619 Senior Member

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    We have little power in medical politics largely because there is no officially recognized academy or specialty organization. Creating such a group may be a political solution, and I am very interested to hear more.
     
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  8. Nielk

    Nielk

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    Video of the presentation:

     
    heapsreal likes this.
  9. Sean

    Sean Senior Member

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    As some wit put it: Science advances one funeral at a time. :p
     

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