The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

A critical commentary and preliminary re-analysis of the PACE trial

Discussion in 'Latest ME/CFS Research' started by Valentijn, Dec 14, 2016.

  1. Valentijn

    Valentijn Activity Level: 3

    Messages:
    13,576
    Likes:
    39,578
    http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20&
     
  2. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

    Messages:
    2,190
    Likes:
    15,013
    Hampshire, UK
  3. A.B.

    A.B. Senior Member

    Messages:
    3,332
    Likes:
    19,840
    Thanks for your hard work!
     
  4. Valentijn

    Valentijn Activity Level: 3

    Messages:
    13,576
    Likes:
    39,578
    Full text at http://www.tandfonline.com.sci-hub.cc/doi/abs/10.1080/21641846.2017.1259724

    I haven't read it closely yet, but it seems to be laying out the major flaws with the PACE "Recovery" paper (2013). So there's a lot of material which is familiar to us. I don't think it talks about the initial 2011 paper much, which is the one that covers improvement instead of recovery.

    But it's very good to see a discussion of the PACE flaws published, since doctors, therapists, and politicians who can't understand or evaluate research papers themselves will need to hear it from a journal. Hopefully this will be useful to show to doctors, and be considered by evidence review panels, such as NICE. And it makes a nice rebuttal to BPS quacks raving about how great PACE is :rolleyes:

    There's a couple graphs that illustrate the questionnaire threshold problems very well:

    SF36.jpg

    CFQ.jpg
     
    Last edited: Dec 14, 2016
    Jan, Hutan, TiredSam and 23 others like this.
  5. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Messages:
    1,027
    Likes:
    4,040
    Toronto, Canada
    @Valentijn Thanks for including those graphs for visual learners and for us dimmer folks.
     
    Jan, Grigor, TiredSam and 11 others like this.
  6. Simon

    Simon

    Messages:
    2,565
    Likes:
    15,677
    Monmouth, UK
    Credit where credit is due

    Dr Carolyn Wilshire was the lead author. Co-author Alem Matthees had an exhausting FOI battle to get the recovery data released. @Tom Kindlon and I were co-authors too. And here's our acknowledgement at the end of the paper:
    Team effort.
     
    Last edited: Dec 16, 2016
    Fat Viking, antherder, Jan and 51 others like this.
  7. deleder2k

    deleder2k Senior Member

    Messages:
    1,090
    Likes:
    4,668
    Wow. Simply stunning! Thanks so much @Simon, @Tom Kindlon and everyone else that has contributed.
     
  8. Cheshire

    Cheshire Senior Member

    Messages:
    976
    Likes:
    7,002
    France
    Clear debunking of the lowering of threshold:

    Thank you so much @Simon and @Tom Kindlon
     
    Jan, MEMum, Luther Blissett and 10 others like this.
  9. Simon

    Simon

    Messages:
    2,565
    Likes:
    15,677
    Monmouth, UK
    Some bonus graphs, not included in the original paper (uses new analysis from FOI data by Alem, but data isnt' in the paper either). They provide a bit more depth, though:

    Note how adding in the CFS caseness and health change (CGI) criteria conveniently made only made only a modest difference to the final recovery rate in the published version (2013 PACE paper), but more than halved the recovery rate according to protocol (=planned).

    Don't forget that 'planned' is as laid out in the 2007 protocol - "published" is as published in the 2013 PACE recovery paper at Psychological Medicine, where the analysis took place after the trial had completed. The authors have since acknowledged that their analysis was "exploratory" and not predefined.

    Cumulative effect of applying the four PACE recovery criteria, for GET

    [​IMG]

    Note that PACE applied the primary outcomes of self-rated physical function and fatigue as a joint category, I split them for more detail. A perhaps cleaner, but less pretty version of the graph is this, below - but same info shown

    [​IMG]
     
    Last edited: Dec 14, 2016
    cigana, TiredSam, MEMum and 19 others like this.
  10. adreno

    adreno Homo neanderthalensis

    Messages:
    4,547
    Likes:
    8,275
    The North
    Very good to see this published.
     
  11. Valentijn

    Valentijn Activity Level: 3

    Messages:
    13,576
    Likes:
    39,578
    I'm very curious to see what sort of letters this attracts from the PACE authors ... and it'll be interesting for them to not be allowed the last word this time :cool:
     
    Jan, natasa778, NexusOwl and 12 others like this.
  12. A.B.

    A.B. Senior Member

    Messages:
    3,332
    Likes:
    19,840
    It's important to keep in mind that this re-analysis only corrects one layer of bias. Underneath this there is another layer of bias which is related to the lack of blinding, an inadequate control group and reliance on subjective measures. One cannot correct this flaw but only point out that even the meager results we're seeing are exaggerated.

    This is an important aspect because these things by themselves are enough to produce highly misleading results.
     
    Jan, natasa778, NexusOwl and 21 others like this.
  13. Simon

    Simon

    Messages:
    2,565
    Likes:
    15,677
    Monmouth, UK
    Yes, and our paper discusses the problem of relying on self-reports in an unblinded trial. We point out that in these cricumstances the authors should have paid more attention to objctive measures of function, such as walking distance, physical fitness and sickness benefit (were there were no gains, apart from a small one in GET walking).
     
    mango, Jan, TiredSam and 23 others like this.
  14. snowathlete

    snowathlete Not an ol' sleazebag

    Messages:
    3,112
    Likes:
    12,373
    UK
    Well done to those involved. Huge thanks for your brilliant work.
     
    MEMum, Luther Blissett, Simon and 7 others like this.
  15. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

    Messages:
    2,190
    Likes:
    15,013
    Hampshire, UK
    Please pass on my (our) appreciation. :balloons:
     
    Jan, MEMum, Luther Blissett and 14 others like this.
  16. trishrhymes

    trishrhymes trishrhymes.wordpress.com

    Messages:
    1,780
    Likes:
    13,618
    Dorset
    Just read the abstract and burst into tears.

    Of joy and gratitude.

    Thank you so much to all concerned.

    :hug::hug::hug::hug:
     
    Jan, MEMum, Luther Blissett and 12 others like this.
  17. Denise

    Denise Senior Member

    Messages:
    1,092
    Likes:
    3,420
    Thank you to everyone involved!
    I am very glad this has been published (and posted here - thanks @Valentijn ).
     
  18. Sean

    Sean Senior Member

    Messages:
    3,047
    Likes:
    16,183
  19. Simon

    Simon

    Messages:
    2,565
    Likes:
    15,677
    Monmouth, UK
    You should get out more :).

    Oh, you probably can't - I see the problem.
     
    Last edited: Dec 14, 2016
    Jan, TiredSam, MEMum and 15 others like this.
  20. Anne

    Anne Senior Member

    Messages:
    289
    Likes:
    706
    Thank you so much, @Simon and others!

    Is "Fatigue: Biomedicine, Health & Behavior" connected to PubMed now? Will article be visible there?
     
    Luther Blissett, Esther12 and actup like this.

See more popular forum discussions.

Share This Page