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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Review of PACE trial and patient disagreement

Discussion in 'General ME/CFS News' started by SpecialK82, Mar 16, 2011.

  1. SpecialK82

    SpecialK82 Ohio, USA

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    http://www.sleepreviewmag.com/news/2011-03-16_03.asp

    Unfortunately, they did not explain the patient side thoroughly, just that organizations believe CBT and GET can be harmful.

    An excerpt from the article:

    The authors conclude: "We affirm that cognitive behavior therapy and graded exercise therapy are moderately effective outpatient treatments for chronic fatigue syndrome when added to specialist medical care, as compared with adaptive pacing therapy or specialist medical care alone. Findings from PACE also allow the following interpretations: adaptive pacing therapy added to specialist medical care is no more effective than specialist medical care alone; our findings apply to patients with differently defined chronic fatigue syndrome and myalgic encephalomyelitis (ME) whose main symptom is fatigue; and all four treatments tested are safe."

    "differently defined chronic fatigue syndrome" - what do they mean?? That's strange wording, and it certainly wasn't explained that way in the title in The Lancet...
     
  2. Hope123

    Hope123 Senior Member

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    They meant that they picked people by Oxford but then subgrouped them into London and CDC groups to see if their findings would apply to London and CDC groups. Although they assert it does, the paper shows minimal data for these groups and questions directed to them by some people have not been answered.

    My cynical side says they put in the part about "main symptom is fatigue" to CYA because this whole thing is a wash and when (not if, when) this is found out, they can use this to backtrack --"Oh, but those folks' main symptoms is post-exertional malaise, not fatigue! [using patient's own assertions that fatigue is not their main symptom, how clever!] This doesn't apply to them!" -- although it truth we all get affected by this study. Anyone want to bet?

    I say document, document, document so they'll have to pay.
     
  3. Enid

    Enid Senior Member

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    Thanks for this "exposure" specialK82 - it certainly looks like some "convenient" manipulation of phrasing.
     
  4. SpecialK82

    SpecialK82 Ohio, USA

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    You are so right, that sounds exactly like what will happen. This is their "out". How they can use the terms ME or CFS in this study is nothing short of criminal.
     

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