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PACE Trial and PACE Trial Protocol

Discussion in 'Latest ME/CFS Research' started by Dolphin, May 12, 2010.

  1. alex3619

    alex3619 Senior Member

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  2. Bob

    Bob

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  3. Bob

    Bob

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    I can't see any comments, Alex. Have I missed something?
  4. alex3619

    alex3619 Senior Member

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    My mistake Bob, I was also reading another article on the same issue: http://www.bbc.co.uk/news/uk-20858353

    Its got a broader scope though.

    Hmm, no, that isn't the right one either. I have read a few of these today. I got my threads mixed up. I was commenting on this one: http://therenodispatch.blogspot.ie/2012/12/bombshell-exclusive-scientists-link_13.html

    This is about the current view that most cases of GWS are due to sarin gas. The real probability of this happening has now been at least somewhat accepted. So of course if sarin is responsible, then its not psychiatric.

    This was of course from another post by you here: http://forums.phoenixrising.me/inde...hood-for-his-work-for-gws-and-me.21116/page-3
    Bob likes this.
  5. Dolphin

    Dolphin Senior Member

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    I just, very belatedly, read:


    I think it does a good job of explaining why not publishing the positive outcome measures is important along with why the thresholds for "normal" fatigue and functioning used in the Lancet paper are unsatisfactory.
    Virtually all of it, I knew before.

    One point caught my eye:

    The study with the mean fatigue 3.27 (SD: 3.21) in bimodal scoring is :

    i.e. the study where, with "Likert" scoring, the community sample had a mean of 14.2 (SD 4.6).

    So, in case it's unclear, the point being made is that if one uses the formula of mean + 1 SD, with the Cella/Chalder data, the threshold for normal fatigue is 6.48 on the Chalder fatigue scale. This is very different from the validated threshold of 3 normal/4 abnormal fatigue in the study mentioned in the PACE Trial protocol:


    This suggests one of two things. Either
    (i) the two fatigue studies found quite different mean (SDs) (it is a pity we don't have such details for the 1993 study - at least, I presume that is the case)
    or
    (ii) the formula mean+1SD is not good to work out thresholds, because that formula gives 6.48 but when actually trying to look for a criterion for normal fatigue (i.e. using another questionnaire), the threshold is 3 or less (i.e. the mean + 1SD formula should give a number between 3 and 4)
    biophile likes this.
  6. Dolphin

    Dolphin Senior Member

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    Not specific to the PACE Trial but thought I'd post this term which is new to me:

    http://en.wikipedia.org/wiki/Woozle_effect

    WillowJ, alex3619, Roy S and 3 others like this.
  7. Bob

    Bob

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    A remarkably similar word to 'Weasel'. Maybe a 'Weasel' effect is similar but only applies to CFS psycho-social research authored by SW.
    Valentijn and ukxmrv like this.
  8. Graham

    Graham Senior Moment

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    Did you all cotton on to the Winnie-the-Pooh reference? He follows some tracks, then finds two sets, then three ..., and decides that he is following a Woozle, when in fact they are his own footprints.

    Woosles and Heffalumps are Pooh talk for weasles and elephants.

    I only live a few miles away from the home of Winnie-the-Pooh! And it is about my mental level. And I like honey.
    WillowJ, Sea, alex3619 and 7 others like this.
  9. Dolphin

    Dolphin Senior Member

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    http://www.bacme.info/document_uploads/events/PROGRAMME.pdf



    This included:


    Very little was included in the Lancet paper on pain so I'm guessing new data was presented. I wonder will this ever be published?

    By the way, earlier, he also gave another talk which suggests there was new data shared:
    Might be worth a FOI request, at some stage, perhaps not now. I don't live in the UK so not the best to be doing them I think.
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  10. Bob

    Bob

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    I've just been thinking about objective measures: the six minute walking distance test (6MWDT) and lost employment.

    For SMC-alone there were improvements in both the 6MWDT, and lost employment.
    But for CBT and GET there were no further significant improvements in either the 6MWDT, or lost employment. (Except for GET/6MWDT, for which there was no 'clinically useful' improvement, and data was not given for a third of participants, which suggests that a good proportion may have dropped out of the test.)

    So these results are a double-whammy for the hypothetical psycho-social model of illness:
    If patients are 'fearful' of activity (based on maladaptive illness-beliefs etc., so they avoid activity, leading to deconditioning) then why did SMC-alone lead to improvements in objectively-measured activity/disability, when SMC does not treat or address either 'fear' or 'deconditioning'? (This suggests that patients take on more activity when the symptoms/illness allow, regardless of illness-beliefs and fear.) When, in comparison, CBT/GET, the therapies that were designed to address the 'fear' and 'deconditioning' etc., led to no meaningful improvements for the objective measurements? (This result, for CBT/GET demonstrates that it is not fear or deconditioning that is holding patients back, but other issues.)

    Put together, the separate results for both SMC and CBT/GET, for the objective measures, invert the hypothesis, and turn it on its head!

    If the hypothetical psycho-social model of illness had been successfully proved, the results would have been the other way around. (The results for CBT/GET would have been greater than for SMC.)

    The model has been disproved.
    ukxmrv, biophile, Sean and 1 other person like this.
  11. Sean

    Sean Senior Member

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    Well spotted, Bob. :)
    ukxmrv likes this.
  12. alex3619

    alex3619 Senior Member

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    Darn, the Woozle effect. Here I was thinking I was onto something new, though I have come across citation bias before. Thanks Dolphin. Yes, I see this pattern in the psychogenic literature. Its a real worry when some of it even goes back to C19th discredited literature on neurasthenia for justification.

    If you track psychogenic literature back to the time of Charcot, there is NO objective medical evidence that shows psychogenic illness exists. Everything is subject to alternative explanations. Yet they cite and cite and cite each other, creating a large body of published papers resting on an illusion of substance.

    More recently there has been a focus on measuring secondary evidence such as treatment effectiveness. This is an attempt to ligitimize the nonscience. Its also a characteristic hallmark of pseudoscience. Its a very small divide from such science and pseudoscience, and where that divide is placed is considered very controversial. Historically there are examples where it started as science then the line moved and it became pseudoscience. I think that is happening in psychogenic medicine.

    Bye, Alex
  13. Dolphin

    Dolphin Senior Member

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    The PACE Trial team said this in an e-letter: http://www.biomedcentral.com/1471-2377/7/6/comments#306608


    I'm pretty sure this hasn't been published. Can anyone remember any talk of the results in recent years.
  14. Bob

    Bob

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    I don't remember seeing it anywhere, but I would probably dismiss something like that as meaningless if the results looked fixed. But seeing as they all expected CBT and GET to be wonderful, and APT and SMC to be useless, I would probably remember any results that reflected those expectations, if I had seen them.
  15. Dolphin

    Dolphin Senior Member

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  16. Dolphin

    Dolphin Senior Member

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    A new paper is on its way:


  17. Dolphin

    Dolphin Senior Member

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  18. Valentijn

    Valentijn Activity Level: 3

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    I thought the issue was more that adverse events hadn't been released.

    Does this mean breaking down how many improved or worsened X points, versus group averages?
  19. Valentijn

    Valentijn Activity Level: 3

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  20. Dolphin

    Dolphin Senior Member

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    No, don't think that is it. For one thing, that was published online back in May 2012.

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