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Lancet Infectious Diseases: Editorial, "A proper place for retraction", 2017, mentions PACE in passing

Discussion in 'General ME/CFS news' started by Andy, Jan 29, 2018.

  1. Esther12

    Esther12 Senior Member (Voting Rights)

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    People can try to use blather about 'furthering the debate' in order to avoid actually engaging in real debate about the merits of the claims they've made. It's a little annoying when this happens.
     
  2. Sean

    Sean Moderator Staff Member

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    You seem like some kind of troublemaker. :thumbup:
     
  3. Alvin

    Alvin Senior Member (Voting Rights)

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    Oh yes, i will not rest till the world is a better place or i become a zombie (which would improve my energy level immensely) :walkingdead
     
  4. Barry

    Barry Senior Member (Voting Rights)

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    They seemed to be saying they saw a problem only in the results, which is a very flawed observation. A major contributor to the rubbish results, was the rubbish trial methodology underpinning the results, though I don't doubt the interpretations that formed the results were also dubious.
     
    Last edited: Jan 30, 2018
  5. Barry

    Barry Senior Member (Voting Rights)

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    Yes, rather like some archeological documentaries, which merge in various speculations along the way, and then with a magical wave of the documentary wand say along the lines of "Now that we know all this, we can see such and such must have been the case". Now I think of it, it really does have a lot in common.
     
  6. Andy

    Andy Committee Member

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    I took it to mean that they saw no problems with the methodology, and the complaints only arise because we (the patients) don't agree with the results of the study. I see nothing in what they have written that says that they (The Lancet) acknowledge any issues with PACE at all.
     
  7. chrisb

    chrisb Senior Member (Voting Rights)

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    It would be difficult for an experienced writer to be quite so obscure unless he or she intended to be.

    The conclusion does not appear to follow from the premiss.
     
  8. Barry

    Barry Senior Member (Voting Rights)

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    My comment obviously was unclear, because my intent was to say the same thing in effect. When I said "seemed to be saying they saw a problem only in the results", by that I meant they did not seem to see a problem anywhere else, other than in the interpretations forming the results - which of course is immensely blinkered.
     
  9. Alvin

    Alvin Senior Member (Voting Rights)

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    I think they are trying to manage the cognitive dissonance as best they can, they believe in CBT/GET but can't use PACE as evidence so they are dithering.
     
    Barry, Esperanza, MEMarge and 5 others like this.
  10. Barry

    Barry Senior Member (Voting Rights)

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    Or to but it another way "they believe in CBT/GET but can't use PACE as evidence so they are dithering screwed"
     
  11. large donner

    large donner Guest

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    Well the actual truth is that they are desperate if the best they can come up with is that,"patients didn't like the conclusion".
     
  12. Alvin

    Alvin Senior Member (Voting Rights)

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    Not yet, its still not retracted and they can still take away children from their families using the power of the state and torturing them, there is one being fought right now (and losing) :emoji_cry:

    In a rational world that would open up a pandora's box, if patients don't like the results then it follows that the study is likely messed up because people like being healthy. However in our world victim blaming, ableism and ethically challenged scientists/doctors are rampant :emoji_face_palm:
     
  13. Lucibee

    Lucibee Senior Member (Voting Rights)

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    OK. This is what I really think:

    Retraction (and/or correction) will only happen if both the authors and journal agree it should happen. That is unlikely to happen with PACE because neither groups have the will to do so. The only other way is if a bigger, better study is done that shows that CBT/GET is harmful (which would be unethical to do if the researchers believed that either of those treatments might cause harm), or if you can show that those involved in the original trial were harmed by it.

    I would love to think that pointing out the methodological flaws would have some effect, but I suspect there is too much vested interest in allowing those sorts of flaws to continue to exist (unblinded interventions; subjective, complex, composite outcomes), particularly in psychological research, which is regrettable.

    The problem is that publication of research has not kept up with technology. There needs to be a better way of linking research with criticism. Maybe it would help if journals were obliged to publish a list of all subsequent citations of an article. Currently, it is only tracked through subsequent Correspondence, which as I've said is totally inadequate, particularly if the journal and authors choose to be evasive.
     
  14. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

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    This.
    A review of all the participants undertaken by a team of independent researchers is the only ethical way I can see of overturning PACE.
     
  15. Trish

    Trish Moderator Staff Member

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    There's also the additional problem that even in the GET group there may not have been significant harms if the patients did not comply with the instructions to keep increasing activity and push through symptoms. Those with ME including PEM, rather than Oxford fatigue may have self protected once they realised the exercise set off PEM. Since actual activity was not tracked we will never know.
    So PACE is a non starter in assessing harms in my opinion.
     
  16. large donner

    large donner Guest

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    I think there's a certain amount of genius in running a trial with such bad methodology on a large scale with a large amount of money, when its debunked it can be claimed that we still dont have an answer to the proposed questions.

    So potentially the trial, "has to be done again".
     
  17. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    So we are back to needing more money and more research studies.

    The research funding we need can only cone from government and the pace believers are advising the government...hmm
     
  18. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    It seems that this problem is far from insurmountable, if there is the will to manage it.

    Even a simple traffic light system: green - its all good, amber - caveats that there are criticisms that need to be considered, red- the conclusions cannot be relied upon. Links to the criticisms easily attached.

    Such a system would automatically encourage better methodolgy, improved accuracy and provide great teaching cases.

    No. The problem, as I see it, is there is no will to do anything about it. Too many people are benefiting personally from the current system. It's a very fine example of the old school tie club.
     
  19. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    There's a great model to follow in the example of open source software.

    You write your program or code and publish it in a repository. Anyone is free to examine the code, copy it, and mess about with it.

    If you find a problem, you let the author know in a public post. Anyone can add either a solution, a hint, advice or confirmation of the problem, proposed methodology etc.

    If you find there was a better way to do something you tell the author and they can choose to amend the original.

    If you like the idea but not the solution, or only part of the solution you can 'fork' the project and work away on it, leaving the original author to keep their project.

    Nobody runs around worrying that idiots are messing about with their code, everyone is open with their data and ideas, people join in to help, word is spread around if it is a good idea, it gets ignored if not. Everything is there for anyone else to see, and the whole thing is a social experience.
     
  20. Esther12

    Esther12 Senior Member (Voting Rights)

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    I'd agree with the Lancet paper (although the accompanying commentary claiming a 30% recovery rate certainly needs a correction), but I think that the recovery paper in Psychological Medicine is even more seriously flawed. If we were able to get any debate going on the merits of retracting that paper, I do not see how it could be defended. It includes clear falsehood which if corrected would undermine the central findings of the paper.

    edit: here's an old summary of the two clear inaccuracies:

     
    lycaena, Jan, Lucibee and 8 others like this.

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