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Adverse events and deterioration reported by participants in the PACE trial of therapies for CFS

Discussion in 'Latest ME/CFS Research' started by Tom Kindlon, Apr 26, 2014.

  1. Valentijn

    Valentijn Senior Member

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    So it would seem that they deliberately excluded the category for which there was a statistically significant difference, and substituted it with a closely-related category (barely) lacking a statistically significant difference.

    They do it with no explanation of that omission, no mention of such a switch, and then label it as if it were the same category in which there was a significant difference.
     
    Last edited: Apr 27, 2014
  2. alex3619

    alex3619 Senior Member

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    Switching things is their stock in trade, they do it for definitions of commonly used words a lot.
     
  3. A.B.

    A.B. Senior Member

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    One could say they are giving CBT to their study results. :D
     
  4. Sean

    Sean Senior Member

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    Naughty, bad, uncooperative, delusional, in denial, anti-psychiatry data. A course of CBT for you!
     
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  5. biophile

    biophile Places I'd rather be.

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    Did you have any nightmares later on? Things can get a little hairy and scary in the ...

    Game of definitions.

     
    Last edited: Apr 27, 2014
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  6. Griffin

    Griffin

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    Last edited: May 2, 2014
  7. alex3619

    alex3619 Senior Member

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    When one patient in a study could be assigned a category of significantly disabled, abnormal function, normal and recovered, on the same data, you know there is a problem. The PACE publications contain the evidence that discredits them.
     
  8. alex3619

    alex3619 Senior Member

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    So who is the one person who can see intelligently and clearly in this Game of Definitions? Where is our Tyrion? (A Game of Thrones reference.)
     
  9. Dolphin

    Dolphin Senior Member

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    (This was posted on a mailing list I'm on with regard to Dr Miller. The person said I could re-post it. I asked her and she said her comments related to the PACE Trial rather than the GETSET trial)

     
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  10. Dolphin

    Dolphin Senior Member

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    (In case anyone missed it)
    The journalist, David Tuller DrPH, has today posted a substantial piece on the PACE Trial:

    TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study
    http://www.virology.ws/2015/10/21/trial-by-error-i/

    There's an introduction and summary at the start if you don't want to take on the whole thing.

    It's being discussed in this PR thread:
    http://forums.phoenixrising.me/inde...he-pace-chronic-fatigue-syndrome-study.40664/

    ME Network have also posted their own summary piece:
    http://www.meaction.net/2015/10/21/david-tuller-tears-apart-pace-trial/
     
  11. Dolphin

    Dolphin Senior Member

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  12. Dolphin

    Dolphin Senior Member

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    In the appendix to the Lancet 2011 paper, the 47 Severe Adverse Events are listed (though not together with which trial arm they are in). We are given the 10 Severe Adverse Reactions and the trial arm they are in.
     
    Last edited: Jan 8, 2017
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  13. RogerBlack

    RogerBlack Senior Member

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    Indeed.
    I note http://forums.phoenixrising.me/inde...me-frame-and-recall-reliability-in-cfs.46521/

    Which is a reasonable paper trying to work out how long people can remember symptoms.
    It's not very long.
     
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  14. alex3619

    alex3619 Senior Member

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    Ummm, I remember them. When I get them again. :confused:
     
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  15. Dolphin

    Dolphin Senior Member

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    Table 4 gives data on the numbers and percentages of patients in the PACE Trial who have the following. I'm not sure if we were given this data before.

    All depressive disorders
    Major depressive disorder
    Minor depressive disorder
    Dysthymic disorder
    All anxiety disorders
    Generalised anxiety disorder
    Fibromyalgia
     
  16. ash0787

    ash0787 Senior Member

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    The not remembering symptoms thing is very relevant to me as I experienced this just this week,
    I remember the constraining effect it has on my life like not being able to look out of a window, but not some of the specific details like a high frequency flickering of the vision when the eyes are closed. I don't necessarily see how its relevant to PACE though because gauging general level of health is not affected by that, it wouldn't change peoples ability to write down how ill they felt before and after participating in the trial.

    Having had the sort of depression that causes 'fatigue' in the sense that people end up sleeping in the middle of the day, its easily distinguishable from CFS, its a coping strategy for extreme mental stress and complete lack of motivation, not a physical lack of energy, and those people would not experience PEM.
     
    Last edited: Jan 28, 2017

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