Volunteer opportunity: Organizing Phoenix Rising articles
This section contains all the articles that have been published by Phoenix Rising over the years. As you will see if you browse here, some of the articles are outdated--either the research has been superseded or retracted or the article features an event or campaign that is now in...
Discuss the article on the Forums.

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

    Messages:
    1,105
    Likes:
    274
    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

    Messages:
    6,250
    Likes:
    4,903
    Concord, NH
    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

    Messages:
    1,105
    Likes:
    274
    Long Beach, CA
    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.

See more popular forum discussions.

Share This Page