Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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MECFS Alert - Llewellyn King's advice on funding

Discussion in 'Action Alerts and Advocacy' started by ixchelkali, Feb 28, 2012.

  1. ixchelkali

    ixchelkali Senior Member

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    Long Beach, CA
    Llewellyn King offers his suggestion regarding research funding in the latest video from MECFS Alert.

    [video=youtube;9Y9lLFX8EnM]http://www.youtube.com/watch?v=9Y9lLFX8EnM[/video]
     
    justinreilly and *GG* like this.
  2. *GG*

    *GG* Senior Member

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    Thanks, I wonder about really having the support of 1 million people, perhaps more or less?

    So manyy people don't really seem to be into advocacy, even if they are not in horrible situation, hopefully I am wrong!

    GG
     
  3. ixchelkali

    ixchelkali Senior Member

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    There's nothing wrong with Mr. King's suggestion, but it isn't as if we haven't done it before. Congress specifically earmarked funds for CFS research in their CDC allocations in the 1990's. The CDC simply spent the funds on other things and lied to congress in their reports. That's what led to the GAO audit of the CDC's spending on CFS which showed they had misappropriated $12 million. It also led to Bill Reeves being given whistle-blower status.

    The question isn't simply one of allocating funds to the CDC and NIH for ME/CFS research, but what research they'll spend those funds on. We don't need more bogus psychobabble studies, we don't need prevelance studies that spend a million dollars a year for 4 years to enroll 8 patients, we don't need more studies using patients who are just depressed or tired, that only muddy the results. Unless and until the CDC and NIH are ready to do (or fund) serious biomedical research using well-defined patient cohorts, I don't see any reason to pour good money after bad.
     
    ahimsa and mezombie like this.

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