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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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    I'd assume that never happened. They did talk about a feasibility study for that, and I wondered what happened there. There's also data from LTFU that was never released.
     
    Last edited by a moderator: Jul 29, 2020
    Michelle, sebaaa, alktipping and 8 others like this.
  2. dave30th

    dave30th Senior Member (Voting Rights)

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    A couple of years ago, QMUL published something that indicated White was the PI for that. It was after he had retired. So I badgered the PR guy a few times to get an answer as to how this study was going forward with White if he was retired. And if it was going forward, who was doing it, if not White. I was told then that the study was no longer being planned at that point. Not sure what if anything has happened since. It took a few back and forths to extract that information.
     
    Last edited by a moderator: Jul 29, 2020
  3. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Ah yes - the feasibility study got approval 3 and a half years ago now - I very much doubt they ever bothered doing it.
     
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  5. NelliePledge

    NelliePledge Moderator Staff Member

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    Every time I see LTFU of PACE mentioned my brain doesn’t think - follow - up :whistle:
     
  6. dave30th

    dave30th Senior Member (Voting Rights)

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    Yes, I think that was probably the notice I saw. I can't remember now--would have to check the back posts. It was right after he had supposedly "retired," so that date seems about right.
     
  7. JemPD

    JemPD Senior Member (Voting Rights)

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    Response to a deleted discussion of a deleted tweet.

    As i recall, PACE & FINE were definitely described as 'sister' trials back in the late naughties. Sorry i dont have a ref for that but i do remember it being 'common knowledge' at the time. So someone in the FINE arm could quite easily have thought of themselves as being part of the 'PACE trials'.

    Indeed :D
     
    Last edited by a moderator: Jul 29, 2020
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    Oh, no, that's impossible, I was assured they were chased out of the field by relentless death squads hounding them day and night. That can't be right.
    Wow, a whole 9%, which I'm sure will be totally "random". And they consider a 75% response rate to be a success, so 7%. That's some "success" right there.
     
  9. Mike Dean

    Mike Dean Senior Member (Voting Rights)

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    From the first PACE participants newsletter:
    Fine (www.fine-trial.net) is a “sister” study to PACE currently being carried out in the north west of England. It will show [know] how effective a “pragmatic rehabilitation” programme, provided by nurses in a patient’s home, is. The programme has the major advantage of allowing people who are too unwell to attend a clinic to nonetheless receive treatment
    https://web.archive.org/web/20140712065624/www.pacetrial.org/docs/participantsnewsletter1.pdf
     
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  10. Trish

    Trish Moderator Staff Member

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    And the major disadvantage that it didn't work.
     
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  11. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Ah now, the b@****** just didn't want to get better. :whistle:

    [Sarcasm]
     
  12. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Robert 1973, MEMarge, Woolie and 2 others like this.
  13. rvallee

    rvallee Senior Member (Voting Rights)

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    Of course...

    https://twitter.com/user/status/1290383495542591488


    Oh yeah, they totally "stepped back" and boldly and unbiasedly tested the thing they have been selling for decades. I'm sure that the fact that Horton shares those beliefs has nothing to do here. Nothing at all.
     
  14. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    There is no universe in which that statement is true.
     
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  15. chrisb

    chrisb Senior Member (Voting Rights)

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    Who in the patient community had evr heard of "adaptive pacing therapy"?
     
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  16. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    ¯\_(ツ)_/¯
     
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  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    you'd have to ask AfME that question.
     
  18. Dolphin

    Dolphin Senior Member (Voting Rights)

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  19. Dolphin

    Dolphin Senior Member (Voting Rights)

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  20. rvallee

    rvallee Senior Member (Voting Rights)

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    MEMarge, alktipping, EzzieD and 4 others like this.

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