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Action for ME has joined S4ME

Discussion in 'General ME/CFS news' started by April, Mar 12, 2018.

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  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    Just reading a post-PACE study done by the PACE authors where they are trying to use the PACE data to create sub-sets. Interesting bit at the end:
    "
    The use of the broad and widely used Oxford criteria (Sharpe et al. 1991) and the inclusion of
    Action for ME representatives on the trial management committee (with the resulting addition of the adaptive pacing therapy arm) may have aided recruitment of a representative patient cohort."

    implying that the addition of APT (spun as pacing by AfME and [supposedly] a key treatment being tested) was only added to give validity to the trial in the eyes of patients/AfME members.

    https://kclpure.kcl.ac.uk/ws/files/62088871/Williams_Heterogeneity_revision_Nov_2016_clean.pdf
     
    ME/CFS Skeptic, Inara, Hutan and 4 others like this.
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    "A/ME have helped to design the APT manual and have
    endorsed this version of pacing,"

    https://web.archive.org/web/2004071...antpr.plus.com/THE PACE TRIAL IDENTIFIER .pdf
     

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