A general thread on the PACE trial!

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

  1. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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  2. Trish

    Trish Moderator Staff Member

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    Ha, very good, @Adam pwme. Skewered him with his own words! What a hypocrite.
     
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  3. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Ha, Thanks Trish. I couldn't let it lie.
     
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  4. rvallee

    rvallee Senior Member (Voting Rights)

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  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Somebody involved in advocacy has asked me the following. I said I didn't know, but I could share it:
    --
     
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  6. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    There is this from Sharpe et al:
    https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0288-x

    To which you and Carolyn responded:
    https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0296-x

    However, I suspect that your correspondent may be thinking of something that SW said, possibly at a public talk in London (maybe hosted by Sense about Science?) some time ago. I can’t find it on here or the other place but I recall that a couple of people form the forum attended, asked a couple of questions, recorded it and posted a transcript. Sorry can’t remember who or exactly what was said but someone else might.
     
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  7. JaimeS

    JaimeS Senior Member (Voting Rights)

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    That's the one:

    "We prefer the definitions of recovery we used to those used by Wilshire et al. as they give absolute rates more consistent both with the literature, and with our clinical experience."
     
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  8. EzzieD

    EzzieD Senior Member (Voting Rights)

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    I recall someone on the PACE team saying they had to move the goalposts because they realised that if they stuck with the original protocol, nobody would have shown as having recovered. Just went searching but couldn't find a quote along those exact lines, but there is something similar in Sharpe et al "Do more people recover from chronic fatigue syndrome with cognitive behaviour therapy or graded exercise therapy than with other treatments?" https://www.tandfonline.com/eprint/fqQ6bgG9IJCY95NCIAgd/full

     
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  9. Trish

    Trish Moderator Staff Member

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    There was also Wessely on a blog somewhere used a metaphor of setting a ship to sail across an ocean and needing to adjust its direction part way to make sure it reached its required destination. I remember Steve Lubet engaging with him on his University blog pointing out that this is an admission that they adjusted the PACE outcome measures to achieve the result they wanted. Sorry I don't have a reference.
     
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  10. EzzieD

    EzzieD Senior Member (Voting Rights)

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    Heh, yes, that was his 'Mental Elf' blog post about the Good Ship PACE: https://www.nationalelfservice.net/...syndrome-choppy-seas-but-a-prosperous-voyage/

     
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  11. Sean

    Sean Moderator Staff Member

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    An ocean cruise across the Atlantic, you say? In a mechanically sound, water tight ship, its passengers free from any peril?

    :rolleyes:
     
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  12. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    This is what I was thinking of (the bit in bold in the second Tweet):
    https://twitter.com/user/status/847468025120907265


    https://www.thefacultylounge.org/20...simon-wessely-defender-of-the-pace-study.html: “Finally, you point to your own blog post, which ironically undermines your very point. You compare the PACE Trial to an ocean liner plotting a course from Southampton to New York, and express satisfaction that it made the trip “successfully across the Atlantic,” despite course corrections along the way. But surely you realize that a randomized controlled study is not supposed to have a fixed destination, but rather should follow wherever the evidence – or the current, to maintain the metaphor -- leads. You thus virtually admit that the PACE Trial was always intended to reach a particular result, and that adjustments along the way were necessary to get it there. Just so.”
     
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  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  14. EzzieD

    EzzieD Senior Member (Voting Rights)

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    Yes! That's the one I was thinking of. "They changed the recovery measure because they realised they had gone too extreme and they would have the problem that nobody would recover."

    It would be funny if it wasn't so serious.
     
  15. rvallee

    rvallee Senior Member (Voting Rights)

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    The metaphor works best because a cruise ship has a planned destination from the start and does not deviate from it, in fact the destination is the only guaranteed thing, as sometimes itinerary will change a bit, say because of weather, but the destination is already negotiated in a contract and guaranteed to deliver.
     
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  16. rvallee

    rvallee Senior Member (Voting Rights)

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    Wessely blatantly lied here, said at most there was one change to the main Lancet paper. There were many fundamental changes. He should know, he wrote the damn manual and was a center lead. In secrecy. Because reasons.
     
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  17. Barry

    Barry Senior Member (Voting Rights)

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    The above cuts to the chase of why BPS-flavoured psychiatrists cannot get their heads around the notion of objective outcomes. It's just not in their DNA. It's an alien concept to them. Their whole knowledge domain is steeped in and built on the concept that subjective measures are all there are, which must still be a rubbish statement even for mental illnesses; going out with friends, going to the shops, taking up a hobby, joining a club, are all objective measures to some degree. So to say there are none in his world is just flimflam. Patient reporting of subjective sensations is not the same as patient reporting of verifiable objective measures.

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    How many times can a 'scientist' shoot themselves in the foot and remain standing! He clearly shows here his doctrine that a trial is done for the purpose of confirming the investigators' beliefs. "Yes, why? Because we already know" ... so why the f' was there any point doing PACE? If the expected results were "already known", and so justified (in the strange world of a BPS psychiatrist) corrupting the actual results! If this doesn't shout religious doctrine not scientific method, then I don't know what does.

    This is medieval. It's why their critics have to be attacked, because there is no defence against the criticism. You really, really do not need to be a scientist to see why this is so crass, absurd, unforgivable, ludicrous, disgusting, etc.
     
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  18. Barry

    Barry Senior Member (Voting Rights)

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    @dave30th: It feels like there is ample material for a PACE (etc.?) jokes blog post. Something the scientific community could draw on for after-dinner speeches for a long time. So long as it was kept factual and in context then would presumably be OK.
     
  19. dave30th

    dave30th Senior Member (Voting Rights)

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    I have long felt the need for a lexicon for "PACE-speak" or CBT/GET-speak--"recovery" translates in standard English to "remission" and to "performing less well on a measure at outcome than at baseline." etc.
     
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  20. Sean

    Sean Moderator Staff Member

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    Titanic.
     
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