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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Duke study, poor design

Discussion in 'Action Alerts and Advocacy' started by WillowJ, Jan 20, 2011.

  1. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Sleep study, "Behavioral Insomnia Therapy With Chronic Fatigue Syndrome"

    Makes the correct points,
    Makes the outrageous hypothesis:
    They state the inclusion critera as:
    The usual exclusion criteria, plus past history of major psychiatric-classified diseases if considered resolved for at least 5 years. The this:
    Ha! So they will have no ME/CFS patients in their study at all, or hardly any, because we have those things in every proper study that has ever been done. Narcolepsy is hypothesized to be a feature of ME, hypopnea has been very well replicated...

    GIGO

    We should track their progress, and if they get enough participants, we can then go ahead and start writing letters to send to whatever journal would publish their results.

    http://www.clinicaltrials.gov/ct2/show/NCT00540254
     
  2. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    Even Circadian Rhythm Disorder is excluded? That is even part of the CCC I believe. I'd guess atleast 50% of ME/CFS patients with insomnia and other sleep problems have Circadian Rhythm Disorders. Many have RLS, hypoapnea. You're right, this is a poorly designed study. Participants will be "be diagnosed with CFS by the Study Physician using CDC criteria"......also "Study patients can have comorbid depression".

    Looks like another pointless study. DUMP the CDC CRITERIA!!! We're back in 1990 with that junk!!!

    I can't believe the amount of $$$$$ wasted on crap studies.
     
  3. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    ya, even that

    pointless

    I wonder if we could get someone (with a Ph.D.) to write to Duke's review board, and point out that they are wasting their funds?
     
  4. Snow Leopard

    Snow Leopard Hibernating

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    Circadian Rhythm Disorder is common and the reason is because our biorhythms only demand 7-8 hours sleep, yet for many, our body demands 12+ hours. This incompatibility causes a shifting wake/sleep pattern.
     

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