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Falling Behind and Flailing About: the NIH, P2P, Dr. Francis Collins and ME/CFS

Discussion in 'General ME/CFS News' started by zzz, Nov 22, 2014.

  1. zzz

    zzz Senior Member

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    A couple of days ago, the article Falling Behind and Flailing About: the NIH, P2P, Dr. Francis Collins and Chronic Fatigue Syndrome appeared on the Health Rising site. It is a sobering description of what is going on (and equally importantly, what is not going on) at the high levels of the U.S. government concerning ME/CFS. For those who expect that federal funding for ME/CFS will be increasing anytime soon, this article will be rather disillusioning.

    For a rather complete description of the political and financial situation surrounding ME/CFS in the U.S., I recommend reading all the links in the article. For example, the links contain everything from an illuminating description of the funding history of ME/CFS at the NIH to the biographies of ME/CFS experts who were excluded from the P2P Workshop to the biographies of speakers who believe ME/CFS is a functional somatic syndrome who were included in the P2P Workshop.

    One of the links notes that the current annual budget of the NIH is $30 billion, while the amount allocated to ME/CFS research has been stuck around $5 million, and has actually been declining after inflation is taken into account. Compare that with the budget for AIDS research, which is $6 billion - more than a thousand times higher for approximately the same number of affected people. If AIDS were not under control and was still invariably fatal, this would be more understandable. But those days are long past, and it's been five years since Nancy Klimas said she'd rather have AIDS than CFS.

    For comparison, although ME/CFS receives $5 million a year in funding, the study of male pattern baldness received $16 million last year.

    From Meghan-Morgan Shannon's testimony before the CFSAC on October 30th, 2009, referring to a speech by Dr. Dan Peterson at the Second World Conference on CFS and Related Disorders in September, 1999:
    The article and its references would seem to support Dr. Peterson's conclusion.
     
    Last edited: Nov 22, 2014
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  2. alex3619

    alex3619 Senior Member

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    Five years ago I came to the same conclusions as Dr Peterson. Science is the accelerator toward a cure, but bad science and bad politics are the brakes. I guess Dr Peterson figured that out 20 years before I did.

    The real criticism of the IOM and P2P will be after we have the final product. Then we can analyze it, find the flaws, and make them public and obvious. It seems that dire public need does not lead to appropriate political action. How about scandal?
     
    Last edited: Nov 22, 2014
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  3. anciendaze

    anciendaze Senior Member

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    My own take, after reading those emails, is that the upper echelons of NIH have not progressed beyond the view already existing at the time of the Incline Village outbreak: this is a public relations problem rather than a medical problem.
     
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  4. halcyon

    halcyon Senior Member

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    It's willful ignorance, at best. Why should patients be forced to open their eyes to the truth? The NIH's very own PubMed system indexes countless articles with good science on ME/CFS. They can't be bothered to read it?
     
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  5. Sean

    Sean Senior Member

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    [JOKE]

    Maybe we are investing our limited money in the wrong kind of 'research'.

    Maybe we would better off hiring a few private detectives to dig up dirt on the main decision makers at the IOM and P2P.

    Perhaps some interesting photos from their student days when they were young and foolish, and in their 'personal exploration' phase. Possibly involving a skimpy nun's habit, a bathtub full of alphabet spaghetti, a dozen shots of tequila, exquisitely applied hot wax, cattle prods at five paces, and tag-team howling at the full moon?

    Not that there is anything wrong with that sort of stuff between consenting adults, of course.

    [/JOKE]

    ;););)
     
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