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A general thread on the PACE trial!

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Esther12, Nov 7, 2017.

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  1. Valentijn

    Valentijn Guest

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    The collection of published PACE papers ended up having dozens of co-authors, from what I recall. Any British academic attacking PACE would also likely be attacking a co-worker from their own institution, and risk associating their own institution with the scandal of supporting poor research practices.
     
    Last edited: Nov 16, 2017
    Valentijn, Nov 16, 2017
    #41
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  2. Inara

    Inara Senior Member (Voting Rights)

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    Hi @Esther12!

    Thanks! Honestly, that makes me feel better. I think and think and think...and always come to the conclusion: It seems unachievable. :) But I agree -

    I never heard about Cochrane before. What kind of standards do they use in order to classify a paper as "scientific" or "evidence based", do you probably know? What was their conclusion with regard to PACE?
     
    Inara, Nov 16, 2017
    #42
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  3. Inara

    Inara Senior Member (Voting Rights)

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    But an annoying embarrassment... :wtf:
     
    Inara, Nov 16, 2017
    #43
    MEMarge, Barry and Wonko like this.
  4. Esther12

    Esther12 Senior Member (Voting Rights)

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    Cochrane reviews are farmed out to different authors. The PACE trial's Peter White was a co-author of the protocol for the review of exercise therapy currently being conducted, along with lead author Larun, who in an earlier review claimed PACE had a low risk of bias and then failed to engage with submitted comments raising concerns about her work.

    There are lots of lengthy documents about Cochrane's standards available, and people have read them and highlighted a failure to properly impose those standards, but so far nothing seems to have changed. Simon Wessely was heavily involved with the Cochrane group which oversees CFS.
     
    Esther12, Nov 16, 2017
    #44
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  5. Adrian

    Adrian Administrator Staff Member

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    I think it means they don't have sufficient people in the trial to show their expected effect size reliably so they talk about multi-arm stuff where they basically say because CBT and GET are similar we can agregate results.
     
    Adrian, Nov 17, 2017
    #45
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  6. Inara

    Inara Senior Member (Voting Rights)

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    Hi @Esther12, reading your post doesn't increase my trust and confidence in Cochrane. :)

    Thanks for the info!

    It seems to be always the same...no matter which "independent quality evaluation" you choose, there's always some form of influence.
     
    Inara, Nov 17, 2017
    #46
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  7. Adrian

    Adrian Administrator Staff Member

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    The Cochrane response to Robert Courtney's comments are very telling. They basically say they will ignore the outcome switching in the PACE trial and rate it highly anyway and also give unconvincing excuses for their own outcome switching.
     
    Adrian, Nov 17, 2017
    #47
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  8. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, Nov 22, 2017
    #48
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  9. Solstice

    Solstice Senior Member (Voting Rights)

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    Solstice, Nov 23, 2017
    #49
  10. Adrian

    Adrian Administrator Staff Member

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    It is but I think it is noticeable that F&M have a huge amount of integrity in how they have handled this especially in comparison to others.
     
    Adrian, Nov 23, 2017
    #50
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  11. Dolphin

    Dolphin Senior Member (Voting Rights)

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    It wasn't a serious suggestion and I'm amazed it is required to point this out.
     
    Last edited: Nov 23, 2017
    Dolphin, Nov 23, 2017
    #51
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  12. Solstice

    Solstice Senior Member (Voting Rights)

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    I got that, but something about it rubbed me the wrong way. I don't like to see even the vaguest link towards the skechy behaviour of the PACE "scientists", when it comes to good and thorough biomedical research.
     
    Solstice, Nov 24, 2017
    #52
  13. Barry

    Barry Senior Member (Voting Rights)

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    More a wry observation I think.
    :confused:
     
    Barry, Nov 24, 2017
    #53
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  14. Adrian

    Adrian Administrator Staff Member

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    I was assuming it related to one of the PACE supporters (and Sharpe) celebrating the Rituximab failure.
     
    Adrian, Nov 24, 2017
    #54
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  15. Solstice

    Solstice Senior Member (Voting Rights)

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    Allright, then forget I said anything.
     
    Solstice, Nov 24, 2017
    #55
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  16. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, Feb 8, 2018
    #56
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  17. Esther12

    Esther12 Senior Member (Voting Rights)

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    Esther12, Feb 8, 2018
    #57
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  18. Dolphin

    Dolphin Senior Member (Voting Rights)

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    https://hansard.parliament.uk/commo...-4566-940D-249F5026FF73/PACETrialPeopleWithME
     
    Dolphin, Feb 21, 2018
    #58
    MEMarge, janice, Alvin and 11 others like this.
  19. Dolphin

    Dolphin Senior Member (Voting Rights)

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    https://hansard.parliament.uk/commo...-4566-940D-249F5026FF73/PACETrialPeopleWithME
     
    Dolphin, Feb 21, 2018
    #59
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  20. Sean

    Sean Moderator Staff Member

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    The appallingly cruel double-bind (Catch-22) nature of this situation needs to be pointed out very clearly to parliament.

    It is impossible for patients to win. If they try to please the 'therapists' they end up sicker and having to lie to avoid displeasing those in authority. But if they refuse to do what they know from long bitter experience is going to make them sicker (possibly permanently), then they get labelled as uncooperative, and denigrated, denied further support, and at worst sectioned and removed from their family and friends (a cruel punishment for an adult, but an especially cruel one for children).

    Both options are completely unsustainable and very destructive.

    What the BPS cult have done is construct a superficial 'logic' that eliminates a priori the possibility that they might be exposed as being wrong. Any time the 'therapy' doesn't work, it is because of the patient's pathological attitude. Being a BPS cultist means never having to admit you are wrong.

    Those who persist in forcing sick vulnerable people into this situation are nothing more than savages, no matter how slick their suits, rhetoric, or CV.
     
    Sean, Feb 22, 2018
    #60
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