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PACE 10 year follow-up: feasibility study

Discussion in 'Latest ME/CFS Research' started by Dolphin, Sep 2, 2017.

  1. Dolphin

    Dolphin Senior Member

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    via:


    http://www.hra.nhs.uk/news/research-summaries/pace-10-year-follow-up-feasibility-study/

     
    Jo Best, Woolie, barbc56 and 10 others like this.
  2. Alvin2

    Alvin2 Senior Member

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    Gather some more data to doctor to fit their alternative fact ideology [facepalm]
     
  3. Esther12

    Esther12 Senior Member

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    Who wouldn't trust White to run this appropriately?

    Last time they were talking about a 5 year feasability study. Now 10?

    Odd, as QMUL are trying to use White's retirement to avoid releasing PACE info:

    https://www.whatdotheyknow.com/request/cfs_a_small_of_the_objective_phy_2#incoming-1026722
     
    Jo Best, Woolie, barbc56 and 19 others like this.
  4. Sean

    Sean Senior Member

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    "a random sample"

    But you have already stuffed the randomisation, so what is the point of doing any further data collection?
     
  5. alex3619

    alex3619 Senior Member

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    Knowing the history, and White's 2007 publication on SD in SF36PF, who would trust him to run this? He is obviously not retired, just from clinical practice perhaps?
     
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  6. alex3619

    alex3619 Senior Member

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    Yeah, but they used the buzzword again so it must be OK. [Sarcasm]
     
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  7. Revel

    Revel Senior Member

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    Heck, if we can't even trust the fact that he has retired . . . :confused:
     
  8. Alvin2

    Alvin2 Senior Member

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    It seems they have learned a few behaviours from everyone's "favourite" president. Lie with impunity and lie to cover for the lies.
     
  9. Valentijn

    Valentijn The Diabolic Logic

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    The time to ask patients how they feel about sharing anonymous data is when they join the trial. Because patients and researchers do not have the right to prevent their anonymous data from being analyzed, unless patients completely withdraw consent.

    Grow up, White. You lost, open data won. Get over it and move on with life. Enough of the hissy fits and posturing.
     
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  10. Forbin

    Forbin Senior Member

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    Well, I certainly hope that no one tells them that their request for additional data is "vexatious."
     
  11. user9876

    user9876 Senior Member

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    I don't understand why they would bother with a sample of 60 rather than sending forms out to everyone they can trace.
     
  12. Hutan

    Hutan Senior Member

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    The smaller the sample, the better the opportunity for manipulation of the patient selection.

    Although, to be fair, the proposal is for a feasibility study that, if successful, presumably would be extended later to the rest of the participants.

    I'd love to see a study of all the participants done by an independent party. Failing that, I wonder if the MEA would be up for collaborating, even with White, to ensure the questions asked are sensible? @charles shepherd

    [Edit:
    Perhaps the feasibility study has been completed already?]

    White must really feel very sure that we are all fruitloops (who just need to get over our fear of physical activity and attachment to being ill) and that CBT and GET cured plenty of people to keep pursuing this.
     
  13. Snow Leopard

    Snow Leopard Hibernating

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    This could be a reasonable study if led by someone else...
     
  14. user9876

    user9876 Senior Member

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    This is why I wonder what the point is of doing the feasibility system. Once all the questionnaires are collated and a system for tracking addresses is designed why not just do it for everyone involved.

    I wondered if it would allow them to avoid a follow up. They spun the 2.5 year one so wouldn't expect any better results for 10 years.
     
  15. lilpink

    lilpink Senior Member

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    Big 'YES'!
     
  16. Hutan

    Hutan Senior Member

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    Well, you carefully choose your small sample so as to be quite confident of a good result. Then you can publish the small study and win more years of NICE support.

    Then, after having basked in the glory for a good while, if you've noticed that some of the questions don't give quite the right outcome, you can tweak them a bit or quietly drop them before applying them to the wider, less carefully selected sample.;)
     
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  17. trishrhymes

    trishrhymes Senior Member

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    Our cynicism about this seems to me to be completely justified.

    I think it would be reasonable to expect that any follow up should be designed and carried out by a completely independent group of researchers.
     
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  18. RogerBlack

    RogerBlack Senior Member

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    What might we reasonably want to ask in such a followup?
    Neglecting the hugely problematic authorship question.
     
    ladycatlover likes this.
  19. lilpink

    lilpink Senior Member

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    Yes..if there was ever any sense that such work could provide anything useful at all. As we know the PACE Trial has been a load of old cack from its inception & so it would be insane for funding to prolong its death throes further. You can't make a silk purse from a sows ear, and the PACE Trial is a poor infected pus-filled ear of the sort that should be swiftly amputated and buried.
     
  20. Large Donner

    Large Donner Senior Member

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    I can just see them claiming all 60 are fully recovered but no one wants their data shared.
     
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