1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 8th April 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

More PACE trial data released

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by JohnTheJack, May 7, 2019.

Tags:
Page 1 of 12
  1. JohnTheJack

    JohnTheJack Moderator Staff Member

    Messages:
    4,369
    I first applied back in 2016. I went through review and then a complaint to the ICO and then all through last year I was in the process of an appeal to the FTT.

    The ICO switched right at the end to support me and QMUL settled, promising to send me the data, 'if they could'.

    Today I have just received:

    EuroQOL (EQ-5D) scores.

    Hospital Anxiety and Depression Scale scores in both anxiety and depression sub-scales.

    Work and Social Adjustment scale scores.

    Borg Scale scores

    Physical Health Questionnaire 15 items (PHQ15) scores.
     
    JohnTheJack, May 7, 2019
    #1
    daftasabrush, Ellie_Finesse, Ben McNevis and 85 others like this.
  2. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    Messages:
    626
    Excellent!
     
    Adam pwme, May 7, 2019
    #2
    ME/CFS Skeptic, ladycatlover, alktipping and 17 others like this.
  3. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    4,393
    Nice one John. Can this be linked with the data already released?

    If so, it would be interesting to see how subjective and objective outcomes correlate? We might be able to get some valuable info from all that money spent on PACE!
     
    Esther12, May 7, 2019
    #3
    ladycatlover, JemPD, Woolie and 19 others like this.
  4. Cheshire

    Cheshire Moderator Staff Member

    Messages:
    4,675
    Cheshire, May 7, 2019
    #4
    MyalgicE, ladycatlover, JohnTheJack and 20 others like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,420
    Location:
    Canada
    I mean, I can't really 100% confirm but I'm pretty sure I'm not a Borg.
     
    rvallee, May 7, 2019
    #5
    Lidia, Luther Blissett, ladycatlover and 21 others like this.
  6. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    3,309
    I was going to make a Borg comment as well.
    If we were Borg we would not have ME, their technology can control every cell at the molecular level.

    At this point being a mindless drone bent on galactic domination would be an improvement.
     
    Alvin, May 7, 2019
    #6
    Lidia, ladycatlover, JellyBabyKid and 17 others like this.
  7. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    Messages:
    626
    Forgot to ask, does this mean all the data has been released now?
     
    Adam pwme, May 7, 2019
    #7
    ladycatlover, JohnTheJack, alktipping and 10 others like this.
  8. Gecko

    Gecko Senior Member (Voting Rights)

    Messages:
    262
    Location:
    England
    Fantastic, great persistence @JohnTheJack, thank you. Are you able to share the data here?
     
    Gecko, May 7, 2019
    #8
    ladycatlover, JohnTheJack, alktipping and 8 others like this.
  9. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,746
    Location:
    UK
    MEMarge, May 7, 2019
    #9
    ladycatlover, JohnTheJack, Woolie and 8 others like this.
  10. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    Messages:
    1,585
    Location:
    North-West England
    Great work John! I'm sure we'd be all grateful if in your own time you could collate the data and also let us know what hasn't yet been released.
     
    InitialConditions, May 7, 2019
    #10
    ladycatlover, JohnTheJack, Woolie and 5 others like this.
  11. Lucibee

    Lucibee Senior Member (Voting Rights)

    Messages:
    1,483
    Location:
    Mid-Wales
    Not by a long way, I would imagine. There were 60 pages of questionnaires. Then there's baseline actigraphy, step test etc, which we still haven't seen.
     
    Lucibee, May 7, 2019
    #11
    Lidia, Luther Blissett, ladycatlover and 19 others like this.
  12. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

    Messages:
    1,297
    Location:
    UK
    Many, many thanks, @JohnTheJack . Great result.

    For anyone reading this who is not aware, this has involved a huge amount of work – many, many hours of complex legal arguments against senior academics and highly paid lawyers over many months. For John to have achieved this result on his own, with all the limitations imposed on him by his ill-health, is a remarkable achievement. Thanks also, once again, to Alem Matthees, for helping to pave the way.

    I wonder if it might be possible to get some press coverage, especially with it being ME Awareness week.
     
    Robert 1973, May 7, 2019
    #12
    daftasabrush, Graham, MyalgicE and 66 others like this.
  13. Ravn

    Ravn Senior Member (Voting Rights)

    Messages:
    2,059
    Location:
    Aotearoa New Zealand
    Bravo @JohnTheJack ! Little by little we're getting somewhere. Thank you.

    I can't even begin to imagine how you managed to find the strength, despite your illness, to do such a massive amount of work and to persevere until you got a result. I'm very, very impressed and equally grateful.
     
    Ravn, May 7, 2019
    #13
    Hutan, MyalgicE, ME/CFS Skeptic and 22 others like this.
  14. Forbin

    Forbin Senior Member (Voting Rights)

    Messages:
    1,581
    Location:
    USA
    I could be wrong, but I believe the Borg Scale is a measure of resistance...

    BS.jpg

    ;)
     
    Forbin, May 7, 2019
    #14
    daftasabrush, Hutan, Graham and 21 others like this.
  15. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,317
    To have achieved this in full health would gave been difficult. To do so with ME is amazing.
    I think you need to pick your superhero cloak colour !
     
    Amw66, May 7, 2019
    #15
    Joh, Graham, andypants and 26 others like this.
  16. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,256
    Location:
    UK West Midlands
    Probably white with a big swan on the back judging by his tag ;)
     
    NelliePledge, May 8, 2019
    #16
    andypants, ladycatlover, MEMarge and 6 others like this.
  17. Woolie

    Woolie Senior Member

    Messages:
    2,918
    OMG, freakin' fantastic, John! Congratulations!:party::cake::trophy@:balloons::balloons::woot::woot:!!
     
    Woolie, May 8, 2019
    #17
    ladycatlover, inox, Daisymay and 8 others like this.
  18. Woolie

    Woolie Senior Member

    Messages:
    2,918
    No, not by a long shot. But its a good chunk more!!
     
    Woolie, May 8, 2019
    #18
    ladycatlover, inox, Daisymay and 9 others like this.
  19. Cheshire

    Cheshire Moderator Staff Member

    Messages:
    4,675
    And it proves that, unlike what they claimed, it's still possible to access the data.
     
    Last edited: May 8, 2019
    Cheshire, May 8, 2019
    #19
    ME/CFS Skeptic, andypants, 2kidswithME and 16 others like this.
  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,582
    Location:
    UK
    Sly Saint, May 8, 2019
    #20
    ladycatlover, inox, MSEsperanza and 3 others like this.
Page 1 of 12

Share This Page