The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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The PACE Trial Invalidates the Use of CBT & GET in ME/CFS: A Review

Discussion in 'Latest ME/CFS Research' started by Bob, Apr 5, 2016.

  1. Bob

    Bob

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    Full text is open access.

    The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review

    Mark Vink
    30 Mar 2016
    J Neurol Neurobiol 2(3)
    http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php

     
    Last edited: Apr 5, 2016
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  2. Bob

    Bob

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    Bloody brilliant. It's a great overview. Written clearly enough for lay people to understand.

    I'm in awe at the way he's pulled so much detailed info together and written it so clearly.

    Mark Vink is a patient and doctor. I think he is almost entirely bedbound, but I might have that wrong.
     
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  3. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    His abstract is very succinct, I can't wait to read it!
     
    Last edited: Apr 5, 2016
  4. NL93

    NL93 Senior Member

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    Amazing work:thumbsup:
    I can't help but feel sad that severely ill patients have to fight against this Pace bullshit. It's so wrong
     
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  5. jimells

    jimells Senior Member

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    This is why the PACE People are trying to hide the data. A true accounting of the harms of their trial could put them in serious legal jeopardy.
     
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  6. deleder2k

    deleder2k Senior Member

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    Simply brilliant. I take my hat off for this.
     
  7. Comet

    Comet I'm Not Imaginary

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    PACE proves itself wrong... love it! :balloons::star::balloons:
     
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  8. jimells

    jimells Senior Member

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    This is devastating.

     
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  9. Asa

    Asa Senior Member

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    "There was no difference in long-term outcomes between adaptive pacing therapy, CBT, GET and specialist medical care, and none of them were effective, invalidating the biopsychosocial model and use of CBT and GET for ME/CFS..."

    Question, please. What exactly is meant by "no difference in long-term outcomes"? I'm wondering if anyone who reported a worsening of symptoms, for example, felt that they experienced a significant and/or prolonged relapse? Did the relapse end before the "long-term outcomes" data was reported? (Does that make sense?)
     
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  10. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    "Therefore the proportion negatively affected by CBT and GET would be between 46% and 96%, most likely estimated at 74%"

    Hello class action lawsuit!!
     
  11. Esther12

    Esther12 Senior Member

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    Some of this doesn't sound right to me. It's really easy to make mistakes with PACE, so even if a lot of this looks good, I wouldn't assume it's all right without checking the details for yourself. (I'm migrained, so am using the sick role to escape this responsibility).

    The strongest card PACE has got against it's critics is that it's such a confusing mess that critiques can often slip up themselves.
     
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  12. worldbackwards

    worldbackwards A unique snowflake

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    Typical ME patient.:)
     
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  13. A.B.

    A.B. Senior Member

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    This refers to there being no significant differences between the four intervention groups.

    They made a mess of the intervention groups by later mixing treatments when they should have stuck to one treatment per group for the sake of clarity.

    Reporting of harms was a criminally bad mess, if I understand it right, one could deteriorate significantly in the second half of the study without registering as worsened because the protocol required worsening to persist for two evaluations in a row... but since the second last evaluation was about half way through the trial, relapses would just disappear from the data. Additionally it was up to doctors and therapists to decide if the worsening was due to the treatment or something else, but the people referring to or delivering CBT and GET probably believed that CFS was psychosomatic and that nothing bad could have happened.
     
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  14. taniaaust1

    taniaaust1

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    this is so good and goes into something ive found myself when some try to assess me during me/cfs studies which I struggled to make the researches understand -wrong assaessment questions being asked causing them to miss how sick I are....

    the part in the full thing at the first graph, where he a severe me person who can no longer stand, sit or walk uses this assessment graph they used in the study and finds by their graph due to the wrong questions not relevant to our illness being used, he would be deemed to have only minor me/cfs and hence not been included.

    for those who cant read whole thing. I suggest to scroll down to graph and read that part if u can.
     
  15. Bob

    Bob

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    We know almost nothing about the nature of adverse reactions because they've not released the data, and no adequate data have been published with regard to relapses and length of relapses.
     
    Last edited: Apr 6, 2016
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  16. Bob

    Bob

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    I don't understand how these figures are obtained. The adverse reactions were reported as being similar across groups, if I remember correctly, in which case I think it's not helpful to suggest that more participants were negatively affected by CBT or GET without checking the full unpublished data. But I may have misunderstood.
     
    Last edited: Apr 6, 2016
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  17. jimells

    jimells Senior Member

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    I think he is over-reading the data here. These percentages are the difference between how many responded to the follow-up questions and the much lower number of participants who did the follow-up step test and walking test.

    I don't think there is any evidence to show why so few participants did the follow-up step test and walking test. They may have been harmed by the "treatments", they may have gotten sicker because that is the natural course of the disease for many of us, or there may be other reasons for not doing the follow-up tests.
     
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  18. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    The author did a brilliant job! Well worth saving and presenting to any doctor who tries to tell you that exercise will help you "recover."

     
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  19. Dolphin

    Dolphin Senior Member

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  20. Sea

    Sea Senior Member

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    It would be good to make the same calculations for the other groups too. The author says that an increase in symptoms for the APT and SMC group would be expected following the Step Test and 6MWT. I haven't looked to see at what time points the worsening of symptoms was. It may have been better to argue this percentage was harmed by the trial rather than GET and CBT specifically.

    No I don't think so

    46% increase in ME/CFS symptoms + 31% musculoskeletal non-serious adverse event + 19% neurological non-serious adverse event = 96%
    Not knowing the overlap he puts it between 46% and 96%
     
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