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CFS patients have no reason to accept the PACE trial results: Response to Keith J Petrie and John We

Discussion in 'General ME/CFS News' started by AndyPR, Jun 28, 2017.

  1. AndyPR

    AndyPR Senior Member

    Latest critique on things PACE related in the Journal of Health Psychology.
    Full open access at http://journals.sagepub.com/doi/full/10.1177/1359105317715476#.WVNUcV3BB4E

    One thing that I think is incorrect is "As a result of the serious impact of activity on CFS patients, the Institute recommended renaming post-exertional malaise (PEM) to Systemic Exertion Intolerance Disease (IOM, 2015b: 11)". I believe it should say that the recommendation was for CFS to be renamed, not PEM.

    ETA: As Susanna seems to be involved with MEAction Australia, I contacted them to point out the above potential mistake, they said they'd pass the info along.
     
    Last edited: Jun 28, 2017
  2. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Great opening salvo:

    "Petrie and Weinman are much occupied with chronic fatigue syndrome (CFS) patients’ beliefs about their illness and the PACE trial (White et al., 2011). Instead, they need to occupy themselves with evidence."
     
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  3. Valentijn

    Valentijn Senior Member

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    It's all well worth reading, but these are my favorite bits:
     
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  4. Molly98

    Molly98 Senior Member

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    Great response
     
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  5. Sean

    Sean Senior Member

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    Strictly speaking, the results show that if patients are deconditioned, then CBT and GET are not effective treatments for that deconditioning.

    Which is not the same as disproving deconditioning, though it certainly offers no support for it either.

    Problem is that they have never properly tested that rather critical assumption of deconditioning, and empirically verified that patients are, in fact, deconditioned (significantly more than otherwise healthy sedentary people).

    They could have saved themselves a lot of embarrassment and trouble if they had.
     
  6. Mary

    Mary Senior Member

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    This is great - another good bit:

    If only!
     
  7. Old Bones

    Old Bones Senior Member

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    I agree -- a very worthwhile article. I clicked on the author's name to see what I could learn about Susanna Agardy. It appears she has been involved with ME/CFS Australia for several years.

    "Search Google Scholar" provided a list of articles/letters written by her, including one of the best descriptions of "pacing" (as opposed to PACE) I've read. It can be found here:

    http://sacfs.asn.au/news/2009/12/12_10_exercise_guidance_note.htm
     
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  8. Mohawk1995

    Mohawk1995 Senior Member

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    The unfortunate outcome of the continued controversy about the PACE trial and intimidation of researchers in the CFS field has increased the likelihood of deterring quality researchers from working in the area’. First, there is no justification for linking legitimate critical debate about PACE with ‘intimidation of researchers’.

    What is most unfortunate outcome is that the "victimizers" are now claiming to be the victims. As one of my favorite quotes by Harry S Truman (from my home state) notes "If you can't stand the heat, get out of the kitchen".

    The PACE folks can't take the heat evidently. Maybe they should find another topic to research. Or maybe they should just "get out of the kitchen". If you can't take criticism, and it isn't always easy to take, you should move on to something else.
     
  9. Grigor

    Grigor Senior Member

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    Who is she exactly? Had a hard time finding out exactly. Is she a patient as well??
     
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  10. alex3619

    alex3619 Senior Member

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    From my now limited memory I think it was both. They wanted to rename CFS to SEID, and PEM to PENE. Or am I confusing that with some other report? So there were two renamings and they might have been confused?
     
  11. alex3619

    alex3619 Senior Member

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    Yes. I have known Susana for a very long time, here in Australia.
     
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  12. Snow Leopard

    Snow Leopard Hibernating

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    GET is not about reversing deconditioning - because it is intense activity that is required to increase exercise capacity. GET as designed cannot increase this and that is why there is no evidence that GET reverses deconditioning.

    GET is about changing beliefs about activity and exercise - GET is a psychological therapy.
     
  13. Alvin2

    Alvin2 If humans were rational...

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    Oh no, were going to lose Dr Davis :rofl:
    Their point is well taken, lies have consequences and not the good kind.
     
  14. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    Incisive. Like a knife.
     
  15. Sean

    Sean Senior Member

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    Doesn't matter whether GET is operating directly or indirectly (or both) on physical deconditioning.

    The basic claim made by the BPSers for both GET and CBT is that, one way or another, they can at least create the conditions that allow physical reconditioning to take place, and neither have proved able to do so.

    The exact mechanism by which they are supposed to do that is largely irrelevant for the purposes of practical clinical outcomes. The bottom line is that they simply can't do it.
     
  16. Alvin2

    Alvin2 If humans were rational...

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    Ah but in our culture lies have a life of their own, many think if you believe a lie strongly enough it becomes fact :bang-head:
     
  17. Invisible Woman

    Invisible Woman Senior Member

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    Or as the late Terry Pratchett put it:
    A lie can run round the world before the truth has got its boots
     
  18. Alvin2

    Alvin2 If humans were rational...

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    Indeed, i've never heard that one, but from Star Trek, "A good lie is easier to believe then the truth"
     
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  19. Barry53

    Barry53 Senior Member

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    This a 100% classic tactic used by every subtlety abusive person I have ever known.
     
  20. Barry53

    Barry53 Senior Member

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    I think and hope that some researchers will be deterred - the cr*p ones. Who of course almost by definition are deemed to be good by the BPS crew.
     

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