Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

PACE 10 year follow-up: feasibility study

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

  1. Dolphin

    Dolphin Senior Member

    Messages:
    10,672
    Likes:
    28,181
    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 If humans were rational...

    Messages:
    1,296
    Likes:
    3,626
    Gather some more data to doctor to fit their alternative fact ideology [facepalm]
     
  3. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    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

    Messages:
    3,257
    Likes:
    17,985
    "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

    Messages:
    12,491
    Likes:
    35,109
    Logan, Queensland, Australia
    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?
     
    Maggie21, Woolie, snowathlete and 3 others like this.
  6. alex3619

    alex3619 Senior Member

    Messages:
    12,491
    Likes:
    35,109
    Logan, Queensland, Australia
    Yeah, but they used the buzzword again so it must be OK. [Sarcasm]
     
    Maggie21, ladycatlover and Sean like this.
  7. Revel

    Revel Senior Member

    Messages:
    406
    Likes:
    2,447
    Heck, if we can't even trust the fact that he has retired . . . :confused:
     
  8. Alvin2

    Alvin2 If humans were rational...

    Messages:
    1,296
    Likes:
    3,626
    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 Senior Member

    Messages:
    14,281
    Likes:
    45,814
    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.
     
    Maggie21, Jo Best, Woolie and 9 others like this.
  10. Forbin

    Forbin Senior Member

    Messages:
    952
    Likes:
    4,002
    Well, I certainly hope that no one tells them that their request for additional data is "vexatious."
     
  11. user9876

    user9876 Senior Member

    Messages:
    2,583
    Likes:
    18,182
    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

    Messages:
    1,069
    Likes:
    6,427
    New Zealand
    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

    Messages:
    4,613
    Likes:
    12,437
    South Australia
    This could be a reasonable study if led by someone else...
     
  14. user9876

    user9876 Senior Member

    Messages:
    2,583
    Likes:
    18,182
    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

    Messages:
    873
    Likes:
    5,514
    UK
    Big 'YES'!
     
  16. Hutan

    Hutan Senior Member

    Messages:
    1,069
    Likes:
    6,427
    New Zealand
    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.;)
     
    char47, Maggie21, Woolie and 4 others like this.
  17. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,153
    Likes:
    17,870
    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.
     
    Maggie21, Jo Best, Woolie and 9 others like this.
  18. RogerBlack

    RogerBlack Senior Member

    Messages:
    884
    Likes:
    2,868
    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

    Messages:
    873
    Likes:
    5,514
    UK
    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

    Messages:
    859
    Likes:
    3,825
    I can just see them claiming all 60 are fully recovered but no one wants their data shared.
     
    Maggie21, Woolie, Jan and 8 others like this.

See more popular forum discussions.

Share This Page