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

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

  1. Gijs

    Gijs Senior Member

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    @Tom Kindlon, Is this the peer reviewed publication of the pace trial? Or is there another one? Thx all for your hard work!
     
  2. Tom Kindlon

    Tom Kindlon Senior Member

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    Thanks. This is a peer-reviewed paper.

    It is hoped there will be one or two more papers published eventually.
     
    Jan, TiredSam, MEMum and 18 others like this.
  3. JoanDublin

    JoanDublin Senior Member

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    Luther Blissett, JaimeS and Esther12 like this.
  4. Valentijn

    Valentijn Activity Level: 3

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    @JoanDublin - It should start a download of the pdf. It's sci-hub, which is a Russian site.
     
  5. JaimeS

    JaimeS Senior Member

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  6. Denise

    Denise Senior Member

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    Yes, "Fatigue..." is now connected to PubMed though not every article gets on there.
     
    MEMum, Luther Blissett, Anne and 4 others like this.
  7. Comet

    Comet I'm Not Imaginary

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    Thank you all so much! :):woot:
     
  8. AndyPR

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

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    Ellen Gouldsmit is whinging about the paper on the ME Associations Facebook page share of the article, if anybody is remotely interested in what she has to say. I point this out just in case she is actually raising valid points but unfortunately she just comes across as highly irritating to me.
     
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  9. Solstice

    Solstice Senior Member

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    Got a link to that? And would that link be readable without a facebook account?
     
  10. deleder2k

    deleder2k Senior Member

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    Dr Speedy, Solstice and AndyPR like this.
  11. AndyPR

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

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    Thanks @deleder2k , I couldn't seem to figure it out. Weirdly she was the one to share it with the ME Association in the first place, can't see the point in doing that and then being so critical about it.
     
    Luther Blissett and Solstice like this.
  12. Artstu

    Artstu Senior Member

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    You have to put the stage in place before you get on it ;)

    No booing at the back please :lol:
     
    Last edited: Dec 14, 2016
  13. JaimeS

    JaimeS Senior Member

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    The community has legitimate reasons to view research with a critical eye, but this knee-jerk criticism of any researcher who dares try to help us, even if their reputation is unimpeachable and their arguments are sound, is patients standing in their own way.

    I understand that sometimes people have a bad week, and vent in whatever direction. And frankly, there will always be crazies. That's life. There will also be disagreement regarding whose arguments are sound... though I wouldn't have thought that would be in PACE!

    But I think it's becoming part of our culture as a group, that it's okay to vent -- nonsensically, even -- in the direction of even good science. To clarify, I think we haven't been "too rough" with the PACE contingent, and poor science should always be exposed, for the good of society. But maybe we should make sure it's bad science, before decrying it!

    On FB post there is a claim that the authors don't really understand GET... immaterial to the argument of the paper, which is that 'recovery' is not actual recovery. The paper's thrust was not an attempt to explain GET in context.

    @AndyPR that seems to be modus operendi of some folks -- bring critical attention in order to delegitimize something they disagree with. By ensuring it is more widely seen, they ensure it is more widely criticized by their contingent, whomever that is.

    Yep.

    J
     
  14. Cheshire

    Cheshire Senior Member

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    This is one of the comments made by Ellen Goudsmit that @AndyPR was angry about.

    She judges the quality of a paper with one only criterion: "has it been done by me?" Then this is good work. If not, it can only be the result of these unknowledgeable patients who understand nothing.
    With friends like her, no need to have ennemies...
     
    Last edited: Dec 14, 2016
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  15. JaimeS

    JaimeS Senior Member

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    :(

    ....I left that part out. With patients (and researchers, and clinicians!) having gone without a concrete answer for so long, opinions continue to develop, solidify into theories, and -- unless the proponents are careful -- calcify into belief systems. In order to find the answer(s), we have to be willing and able to let go of what we think we know when the time comes.

    I hope we will be able to!

    (Just realized, kind of tangent-y! I mean to say that perhaps this is part of why we are so attached to our own ideas / own research... though the criticisms we're seeing are more like "why didn't they write an entirely separate paper with the focus I would have chosen" which we also see a lot: how dare they look at viruses when my interest is in bacteria, how dare they have examined genetics when everyone knows it's environmental... as far as I know, we still don't know, and as I've said before, if others have some unique insights, please share them and provide references!)
     
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  16. Marco

    Marco Grrrrrrr!

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    Well done to all involved.

    That spikes the usual response to any critical analysis of PACE to date - i.e. 'it's only a blog'. Not any more. Part of the scientific literature and citable.

    The (mis)use of normative data was spectacular which makes me wonder what the peer reviewers were thinking (if at all - actually I probably wouldn't have bothered checking the source data myself assuming that it wasn't being misrepresented).
     
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  17. JoanDublin

    JoanDublin Senior Member

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    Doesn't appear to be doing that for me. Maybe it's my ipad. Will have a go on the PC later. Thanks :)
     
    Luther Blissett likes this.
  18. Esther12

    Esther12 Senior Member

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    She does seem to have a bit of an ego problem. A shame when things like that get in the way.

    Excited to give this a careful read. Looked very good at first glance.
     
  19. Barry53

    Barry53 Senior Member

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    Can someone help me with this graph please ...
    upload_2016-12-14_21-44-17.png
    I know for sure I am misunderstanding something important here, but I cannot see what. The y-axis is "percentage of sample", so it looks (to me :rolleyes:) like it is saying around 65% of participants achieved 100% physical function. I am obviously misinterpreting something. Is the y-axis really "percentage of sample"? or is it a cumulative value somehow?

    Also, if I understood this better, then maybe I would also see where the "13% of participants qualified as recovered on this revised criterion before the trial even began" fits into this graph.

    Thank you in advance.
     
  20. Hutan

    Hutan Senior Member

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    @Barry53, the blue bars represent the population sample, not the trial participants. I forget the details of the population sample, possibly it was UK working age people, but the gist is that most people in the general public have physical function ranging from 95% to 100% function as measured on the SF36 Physical Function assessment.

    So when the PACE trial originally had a recovery threshold of 85%, that was a level of function significantly below most in the general population and so already fairly lax. The new recovery threshold at the 60% mark was a complete joke.
     
    Last edited: Dec 15, 2016
    Jan, TiredSam, MEMum and 12 others like this.

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