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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.

  1. Esther12

    Esther12 Senior Member (Voting Rights)

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  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I don't know the original source of this (spotted it in a tweet by Tom Kindlon)
    :laugh:

    DW7pAVvW0AAVDew.jpg
     
    Woolie, Inara, Allele and 17 others like this.
  3. janice

    janice Senior Member (Voting Rights)

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  4. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Woolie, MEMarge, Indigophoton and 3 others like this.
  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  6. Kalliope

    Kalliope Senior Member (Voting Rights)

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    MP Carol Monaghan says among other:
    This is another one where the Lancet hasn't redrawn it but the researchers are refusing to release data. In fact I think they've said a lot of the data has been lost. This doesn't do UK research integrity any good.
     
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  7. janice

    janice Senior Member (Voting Rights)

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    I'm looking forward to seeing the written answers to Carol Monaghan's brilliant question about the fact there are still difficulties with getting the data from the PACE trial and her point that they are now being told that some of the data has been lost.

    She raised the point that this didn't give a very good impression of UK research integrity. Wow.

    Norman Lamb (Chair) reiterated the point about transparency and asking for a written response..... so, so good.

    Dare I hope for changes?
     
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  8. janice

    janice Senior Member (Voting Rights)

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    Oooops sorry @Kalliope, we overlapped in our posts............you're much quicker on the draw than me.:thumbup:
     
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  9. Kalliope

    Kalliope Senior Member (Voting Rights)

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    No worries. You also had additional info :) So great to see MP Monaghan keep pushing this!
     
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  10. Esther12

    Esther12 Senior Member (Voting Rights)

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    I've been reading some old PACE comments today, and finding old points/arguments that have since been forgotten, I thought I'd repost this one before forgetting it again.

    I'd also like to thank the very many amazing people who took the time to try to engage with this seriously flawed work. Looking back to the start of things, there were so many people contributing that since seem to have drifted away, or that I rarely interact with now, and I feel very fortunate to have been able to learn from and engage with such an inspiring group.

    Saying that - I wish we weren't still having to do it eight years on!!!!
     
  11. Esther12

    Esther12 Senior Member (Voting Rights)

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  12. Esther12

    Esther12 Senior Member (Voting Rights)

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    From an old Dolphin post:


     
  13. Esther12

    Esther12 Senior Member (Voting Rights)

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  14. Esther12

    Esther12 Senior Member (Voting Rights)

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    Some PACE parliamentary questions and non-answers from May 2012 - I'm especially interested in the ISRCTN ones:

    https://publications.parliament.uk/pa/ld201213/ldhansrd/text/120522w0001.htm
     
  15. Dolphin

    Dolphin Senior Member (Voting Rights)

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  16. Esther12

    Esther12 Senior Member (Voting Rights)

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    Woolie and MEMarge like this.
  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  18. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Last edited: Mar 15, 2018
  19. Trish

    Trish Moderator Staff Member

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    I don't know all the ins and outs of what was said back then, but it looks a pretty good response to Horton to me.

    On the Declaration of Helsinki, you mention the 'do no harm' aspect. There was also the fact that the PI and others on the research team had undeclared conflicts of interest, which invalidated the patients' informed consent. Though this may not be relevant to what Horton talked about.
     
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  20. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Thanks, @Trish

    Hooper's letter deals with that in great detail. It's what Horton (and White) referred to as "ad hominem attacks". o_O
     
    Last edited: Mar 15, 2018
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