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The Nightmare Scenario - IOM Case Definition Contract Terrifies ME/CFS Advocates

Discussion in 'Phoenix Rising Articles' started by Mark, Oct 28, 2013.

  1. AzizaJ

    AzizaJ

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    The real sad thing is that it's not rethorics. It's the real situation here in Europe. Wake up America, you're heading for disaster.
     
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  2. Nielk

    Nielk

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    It's because we see what is happening by you that we realize the stakes here. Can you help us stop this?
     
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  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Signed and added my own comments.

    Sushi
     
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  4. Nielk

    Nielk

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    Thank you, Sushi.
     
  5. aimossy

    aimossy Senior Member

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    I am of the feeling that you have ABSOLUTELY NOTHING TO LOOSE by taking a stance as patients and applying pressure within this situation. I could not also understate the importance of backing and supporting our Doctors and Advocates who have made a clear statement of their views in the letter that was sent.
    If anybody has a very clear reason how this could be detrimental in anyway please educate me.
     
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  6. alex3619

    alex3619 Senior Member

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    Yes @medfeb, the scope of the contract is critical, I point I have been trying to hammer home everywhere. Even the best experts will produce nonsense if they are forced to produce a broad and inclusive definition ... .though I think many will just resign rather than do this, or simply not sign up, if they have integrity.

    If Oxford is included as a bone fide group, and subgrouping proceeds based on the limited data that exists, then there is no chance of a good definition. Subgrouping should have been researched for the last 19 years, as emphasized by Fukuda himself. The Fukuda definition was intended as a broad definition to be subgrouped ... what happened to that process? The CDC tried to expand and weaken it even further, making it more inclusive.

    Worse, we don't know what is in the contract, nor the full criteria the IOM will use to select and classify evidence. That criteria will probably result in the primacy of psychogenic views, despite a complete lack of objective evidence that any psychogenic illness even exists. It seems that the rules of evidence do not apply to psychogenic disorders. Evidence based medicine along these lines is a sham, a failure of process. It is however becoming increasingly popular to use "evidence" to "manage" medicine, rather than produce effective results.
     
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  7. alex3619

    alex3619 Senior Member

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    Hi @AzizaJ, I saw this years ago and its why I started to write a book on all this, though even the intro to that is some years away. However I think this understates the case. The world economy is going down the toilet. I think the notion that we will turn this around in the foreseeable future is based more on hope than sound reasoning. As a result government departments and politicians are under pressure to slash costs. The widespread notion that austerity is necessary is also driving this ... despite abundant historical evidence that such an approach guarantees economic stagnation.

    What BPS views do, including a biased use of "evidence", is give governments a rationale for what they are doing to groups like us, and disabled more generally. Its policy, not science. Consensus panels often have this issue, anywhere. The scope of the problem, the rules permitted, the evidence allowed, predetermine the outcome. Suddenly the cheaper option (in the short term) becomes "justified", regardless of the evidence.
     
  8. Sparrowhawk

    Sparrowhawk Senior Member

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    Folks I don't want to sound a down note, but given the unbelievable pressure on Sibelius and Co right now regarding the healthcare website failure, I'm not sure whether any of their staff will have attention for the IOM issue.

    The timing couldn't be worse. Everyone in the entire HHS dept must be being hammered by all directions to fix that website, hair on fire kind of panic in the bureaucracy. IOM stuff? Not a priority. Not to say folks should stop advocating, but I'm just feeling a bit concerned that this other issue is a serious distraction from IOM.
     
  9. aimossy

    aimossy Senior Member

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    Just a thought @Sparrowhawk, im wondering if that could have positives and negatives, slowing the process down might be beneficial to us for oraganising time.....but on the other hand it may distract people who are able to put a halt to or decrease chances of people listening at times to the opposition of the contract.
    my brain is quite cloudy and slow this morn.
     
  10. medfeb

    medfeb Senior Member

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    Alex
    Its not just what the IOM SOW and contract specify for criteria. The IOM SOW specifies that the IOM study will coordinate closely "with the Office of Disease Prevention at NIH regarding their ongoing Evidence-based Methodology Workshop for ME/CFS in an effort to minimize overlap and maximize synergy. The coordination with NIH should assure that relevant information is shared and that key messages are coordinated. In addition to the SOW, that will set the scope of the evidence to be used.
     
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  11. alex3619

    alex3619 Senior Member

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    @medfeb Yet that will be specified in the contract, and determined by rules of the IOM. The contract is secret, the SOW is a watered-down overly-broad and almost useless document.

    So far we have not focused on the NIH workshop. We will have to see what comes out of this. For example, if somehow the use of 2 day CPET becomes mandatory, then things will improve. However given the CDC stand on this, its like the game is fixed before it even begins. Does anyone have information on the precise scope of that workshop? How much will it be reviewing methodology? If it specified methodology, then that is what the IOM may well use, and we have a stronger idea of where things can go wrong.
     
  12. Ember

    Ember Senior Member

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    We have this post by Jennie Spotila:


     
  13. medfeb

    medfeb Senior Member

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    Alex
    About the Evidence Based methodology workshop - you asked - "How much will it be reviewing methodology?"

    Can you clarify what you mean by that?
    Mary
     
  14. alex3619

    alex3619 Senior Member

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    Its called a methodology workshop, but there is huge scope within that brief to work it in different ways. It depends, as always, on the fine print. Its like all we see is the big bold lettering on a 100 page contract, which takes only one page, and all the details are hidden. Those details may be important.

    Using or discussing evidence-based methodology could easily just become "how do we rubber stamp this process with an evidence-based stamp" rather than "how valid is this approach, how can it be modified, what do we need to do to modify the evidence-based approach to make it work for ME or CFS?"

    In particular I am concerned that subjective and probably biased research from the CBT/GET crowd, often based on unproven experimental diagnostics, will be given more weight than objective scientific data from biomedical researchers because of:

    a/ Non replication. (There is often no money or desire to replicate these studies.)
    b/ Small studies. (Psychogenic research often gets much more money for these things.)
    c/ The "experts" unfamiliarity with the biomedical research on ME or even CFS.
    d/ Improper acceptance that psychogenic medicine can be evidence based, whereas their hypothesis rest on diagnostic criteria that have no evidence-based validation aside from weak and potentially biased subjective measures. There is a reason I use the term psychobabble, just as many rationalists have going right back to Karl Popper (though in Popper's time it was called nonscience or pseudoscience, and I use both those terms too).
    e/ Improper use of conclusions in studies rather than getting into the science ... if the science is accepted but the methodology is not questioned, then psychogenic studies will sail right through.
     
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  15. beaker

    beaker CFS/ME 1986

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    There will always be a crisis of some sort that is considered more important then us.
    Yes, this is an especially trying time for HHS.
    But any little thing will be of greater concern at any time b/c We are nothing to them now.
    We have to push forward.

    Thanks always to those who are able to do morre for those who are too sick.
     
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  16. Valentijn

    Valentijn Activity Level: 3

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    It might make it a bad time to get their attention, but it makes a great time to point out how badly they're screwing things up. "In addition to the website issues, look at the crap they did to veterans with GWI, and are now trying to do to ME/CFS patients!"
     
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  17. medfeb

    medfeb Senior Member

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    Alex - thanks and yes, i have those same concerns
     
  18. svetoslav80

    svetoslav80 Senior Member

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    Signed and shared on facebook
     
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  19. caledonia

    caledonia

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    This is good. It will give us more time to organize.
     
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  20. Firestormm

    Firestormm Guest

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    What website are you chaps talking about? Not this one I assume.
     
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