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PACE Trial Recovery Rates

Discussion in 'General ME/CFS News' started by Peter Kemp, Dec 3, 2012.

  1. Peter Kemp

    Peter Kemp

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    Enid, Dolphin, DaiWelsh and 5 others like this.
  2. Stukindawski

    Stukindawski

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    Thanks for this! I intend to give it a good close read when I have enough energy.
     
    Peter Kemp likes this.
  3. Sean

    Sean Senior Member

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    Thanks for this, Peter. Good stuff.

    One of the most important features of that data (as shown in the graphs) is that the vast bulk of any 'improvement' comes in the first 3 months or so, then starts levelling out, with minimal further improvement.

    And that is coming off a very low baseline.

    Definitely no recovery going on there.
     
    Valentijn, alex3619 and Peter Kemp like this.
  4. Peter Kemp

    Peter Kemp

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    Thanks all. I agree Sean, no recovery happening but I suspect a common phenomenon is occurring. Clients (especially getting 'free' therapy as in research) are not only beholden, they can actually fear appearing critical. Personally, I reckon I must have told doctors, friends and relatives at least 20 times, 'I think I'm a bit better'. It was a complete lie - I was unconsciously trying to spare other people's feelings and letting my natural optimism override my essentially honest nature and common sense. I bet they wish they'd had me in the PACE Trial - I'd probably be down as 'recovered'.
     
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  5. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Its a mask. If intimidated or feeling disempowered we can present to the world as normal as we can. Its why asking for proof of recovery via questionairre is an invalid approach. Objective measures like constant activity monitoring (e.g. actometer) is required.

    Early improvement then tapering off suggests to me that its a case of "oh my, somebody is helping, I feel a bit better" rather than real improvement.

    Where did the date for this analysis come from? The restricted published data, is that from the trial itself? Or additional material?

    From the partial improvement seen my guess is most improvement is from natural course of illness in a subset of patients. Is there anything to back this view up or contradict it?

    In particular are there any outlier results? We really need the raw data and until its released any analysis will be disputed. Once its released though we will have more data to show what really happened. We soooooo need that data.
     
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  6. Peter Kemp

    Peter Kemp

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    Hi Alex. The date on the analysis came from me, the PACE Trial was published in the Lancet in Feb 2011. Recruitment started in May 2006 and all data was collected in 2010. One of the participant newsletters (2008) mentions participants will be recontacted after 2.5 years for an update. No news on this yet.
     
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  7. alex3619

    alex3619 Senior Member

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    Just let me say Peter than I appreciate the work you have done over the years. I am sure others do too.
     
  8. Dolphin

    Dolphin Senior Member

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    Good stuff, Peter. Thanks.

    There is an error, although it doesn't affect most of what you say:
    A Chalder Fatigue Questionnaire with Likert scoring of 1, 1, 1, 1, 1, 1, 1, 1, 3, 3, 3 = 17 would have a bimodal score of 3
     
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  9. Enid

    Enid Senior Member

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    Well all I can say a ticket to the gym from my first GP (GET) or "all in your mind" (CBT) in A & E - ordinary docs - doesn't work and is a sure way to the hell in medicine here if so unlucky. Are they so blind in the UK (probably yes) - unable to stand, passings out, unable to speak let alone swallow cured by these "therapies" ..........worse than a joke.
     
    Shell likes this.
  10. Esther12

    Esther12 Senior Member

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    Nice one Peter.

    This actually got cited in this paper (reference 61):

    Chronic fatigue syndrome/fibromyalgia: a “stress-adaptation” model

    Boudewijn Van Houdenhove, Patrick Luyten & Stefan Kempke

     
  11. biophile

    biophile Places I'd rather be.

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    Reference 14 is Malcolm Hooper's "Magical medicine: how to make a disease disappear".
     
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