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PACE Trial and PACE Trial Protocol

Discussion in 'Latest ME/CFS Research' started by Dolphin, May 12, 2010.

  1. Dolphin

    Dolphin Senior Member

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    And I bet people thought random messages were being posted, rather than it all being choreographed. ;)
    Bob likes this.
  2. Valentijn

    Valentijn Activity Level: 3

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    Another great video. Though I think your dog looked a little nervous when you said "CBT" ... maybe it's heard about that one before? :p
  3. Graham

    Graham Senior Moment

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    No, that was the fourth take, and although he usually settles down and nods off, all the activity around kept him semi-alert. CBT to him probably means Could Be Tasty - he seems to eat just about anything. And make no mistake, take him out into our local Ashdown Forest, and he goes through the mud and shrubs like any other spaniel.

    Glad you appove of the video.

    By the way, as you, like all people of sound mind,are a fan of Terry Pratchett, have you seen Steven Wetherell's first book (well, a trilogy - in e-book form)? For a first book it is very much on the right tracks.
  4. Dolphin

    Dolphin Senior Member

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    :)
    Although a dog that behaved like this might be more impressive:
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  5. Esther12

    Esther12 Senior Member

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  6. Dolphin

    Dolphin Senior Member

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    http://www.actionforme.org.uk/get-i...nd-campaigns/lords-question-on-cfs-pace-trial
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  7. Stukindawski

    Stukindawski

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    At what point is there enough evidence regarding the flimsiness of the PACE trial to support some serious pressure on the Lancet?

    While the Lancet has deflected PACE criticism before, I think as many informed public demands for a retraction (frankly you can all but ignore dealing with the Lancet directly) could possibly provide enough egg on the face to make it very hard to keep this paper and remain a respected journal at the same time.

    From a legal point of view, it's probably in either the funders hands, or the Lancet's hands to do anything about it, so perhaps a little public relations is the order of the day.

    The other possibility is commissioning an independent report, although, it would probably have to be set up by a trusted advocate who ties all participants to non-disclosure agreements, to stop certain grubby paws getting near it. Followed by releasing the report fairly unexpectedly. I'd miss a few dinners to help pay for that :p
  8. Peter Kemp

    Peter Kemp

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    I understand that there are good people still working to get the Lancet to address problems with the PACE trial. Unfortunately, Richard Horton, the editor, has already taken a position in defence of the research and researchers so it is going to be difficult to get it changed. An independent analysis of the data is an excellent idea but would be very costly and so far the data has not been released. It might be just as good if the researchers had published or made available ALL the analysis that was done/collated but not published. There must be a great deal of it.
  9. user9876

    user9876 Senior Member

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    I was wondering what liabilities the Lancet and queen mary's carry if GET harms patients when they have failed to publish acurate results. With the Lancet it is an interesting question since they have been told about the many problems with the way the trial was reported and have claimed to have looked into them.
  10. Stukindawski

    Stukindawski

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    Oh yeah, Richard Horton has completely dug his heels on a PACE. I also think that's what makes work like yours (which btw, you have my deepest thanks for) so important. When you can't get in through the front door, you can still park a lorry full of speakers outside the building and play Joe Pasquele's "I know a song that'll get on your nerves" on infinite repeat.
  11. Bob

    Bob

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    Maybe it would be a good idea to make a political push for an independent analysis of the PACE data.
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  12. Graham

    Graham Senior Moment

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  13. Bob

    Bob

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  14. Graham

    Graham Senior Moment

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    Thanks Bob, I'm practising for Strictly. Slow, slow, thick, thick, slow. And now I am going to take a vow of silence in order to develop my wisdom. With a bit of luck it will last a good eight hours (the silence, not the wisdom: that will be very transitory).
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  15. Bob

    Bob

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    Action for ME website

    The analysis was ostensibly on the basis of treatment intention. This is the correct way to analyse the results of a randomised controlled trial, because if the analysis only involves those subjects who complete the trial, it disregards any participants who drop out because of adverse effects, and may therefore give an unjustifiably favourable impression of the treatment under examination.

    The authors state, though: “We excluded participants from the intention-to-treat population for whom we had no primary outcome data in the final analysis.”

    In other words, this was not an intention-to-treat analysis at all, since only data regarding participants who stayed the course long enough for outcomes to be assessed were included in it.

    http://www.actionforme.org.uk/get-informed/news/archived-news/research-news/2011/pace-trial/getting-pace-into-perspective.htm
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  16. Bob

    Bob

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    I don't think that I've come across this before. It seems significant. But I think they included the drop out rates, didn't they? And if my memory serves me well, the drop out numbers were not very high, and would not have made much difference to the final analysis, if they'd been included.
  17. Dolphin

    Dolphin Senior Member

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    I think you might be right for the primary outcome measures.

    But just when you bring this up: for the 6 minute walking test, lots of people (nearly 30%) didn't do the final test which could easily have inflated the scores/any improvement.
  18. Bob

    Bob

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    Yes, I'd noticed that. If 30% dropped out because they were too ill to participate, then it would have inflated the very low scores.
    Dolphin likes this.
  19. Bob

    Bob

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    Is there a discussion thread on the forum about CBT/GET (for CFS) review (meta-analysis) papers, or CBT/GET papers other than PACE and FINE?
  20. Dolphin

    Dolphin Senior Member

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    If you've a specific paper to discuss, please set up the thread. Having threads on particular papers is very handy for lots of people.

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