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PACE Trial and PACE Trial Protocol

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

  1. Mark

    Mark Acting CEO

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    Outstanding! :D
     
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  2. Mark

    Mark Acting CEO

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    So as for their latest study, I've only seen the abstract, and of course we all know one should never just judge by the abstract, one should read the whole paper in order to get a proper sense of the full horror of it, but if anybody has yet done so, and recovered from any resulting anxiety or depression, is my interpretation of their findings correct? Or am I missing something earth-shatteringly useful?

    - roughly half of the PACE trial participants were suffering from an anxiety disorder, a depressive disorder, or both (though whether they also had ME is, of course, another question).

    - this is not unexpected, because previous research has shown that if you use the Oxford Criteria to define "CFS/ME", large numbers of patients have anxiety and depression.

    - the patients with anxiety disorders tended to be more anxious about their health.

    - the patients with depressive disorders tended to be more embarrassed and didn't do much.


    This does not seem exactly ground-breaking news to set the ME research world alight, but I'm probably missing something - did they bury away their most exciting findings in the paper itself, and not mention them in the abstract?
     
  3. Snow Leopard

    Snow Leopard Senior Member

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    Be aware, that this is a tertiary care study and these sorts of figures are common in tertiary care of individuals with other chronic diseases as well.

    Those who agree to take part in a study like PACE are more likely to have co-morbid disorders. It isn't rocket science.

    Given these results, I wonder whether the 'measured' effect was related to a change in reporting behaviour due to a reduction in depressive/anxiety symptoms, rather than a reduction in CFS symptoms...
     
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  4. alex3619

    alex3619 Senior Member

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    WillowJ and Esther12 like this.
  5. Snow Leopard

    Snow Leopard Senior Member

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    "A slow PACE". That's catchy...
     
  6. Esther12

    Esther12 Senior Member

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  7. Mark

    Mark Acting CEO

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    Yes, hopefully that will be up later today...soonish, anyway. Didn't quite manage to get it all done in time for the target of a May 12 launch for both the new forums and the PACE report, but we were pretty close...
     
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  8. Esther12

    Esther12 Senior Member

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    Seems like you've all put in heroic efforts Mark. I need to be better at getting things done... you're all an inspiration.
     
  9. WillowJ

    WillowJ Senior Member

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    well said.

    of course, the *ineffectiveness* of CBT, when designed to treat fears (and deconditioning; there was some overlap with APT despite their stated cautions, wasn't there?), might well lead to an inference about the nature of the illness.
     
  10. WillowJ

    WillowJ Senior Member

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    same as they always mean: Just what they chuse it to mean; neither more nor less. :cautious:
     
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  11. WillowJ

    WillowJ Senior Member

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    yes, that would be the parallel screen reader-friendly site (isn't Graham great?)

    and thanks, E12
     
  12. oceanblue

    oceanblue Senior Member

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    How relevant are exercise capacity measures for evaluating treatment effects in chronic fatigue syndrome? Results from a prospective, multidisciplinary outcome study

    Not sure if this (from 2006)had been posted before but looks relevant to PACE:

    Full text
    Reported SF-36 PF scale means increased from baseline 18.07 to 19.06 post therapy, but those figures look too low to me on either traditional (0-100) or norm-based scoring.
     
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  13. Dolphin

    Dolphin Senior Member

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    Scoring on sheets is 1-3 for the 10 questions i.e. 10-30. So presumably that's what they have done i.e. on traditional scoring, 40.35 (baselines) to 45.30 (post therapy).
     
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  14. Dolphin

    Dolphin Senior Member

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  15. oceanblue

    oceanblue Senior Member

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  16. Graham

    Graham Senior Moment

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    I thought I had finished asking questions on this, but I haven't. When the trial patients were assessed for fatigue and physical functioning, did they get given the questionnaires to fill in, or were they led through it by an interviewer? Implicit in one person's response to me is the suggestion that it was the latter. If so, wouldn't that greatly increase the potential for bias?
     
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  17. Esther12

    Esther12 Senior Member

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    I had assumed that they were given them to be filled in rather than being led through them... but that was just dangerous good faith on my part. I don't think that they said one way or the other. I can't see any legitimate reason for doing it that way though, and as you say, it just greatly increases the potential for bias.

    I did read some things about the impact of different ways of taking tests affecting the scores... I think that some of it was in the Bowling paper that they cited for their SF36 PF norms. That paper also mentioned that people with chronic health problems tended to get higher SF36 scores if they had already filled out a questionnaire specifically about their health condition first, possibly making the order of when patients filled out CFQs and SF36 PF questionnaires important.

    I could probably dig out a quote if you wanted... I've forgotten so much of this stuff already though!

    PS: I just dug out the paper... and there was nothing really conclusive. It was more about reporting different concerns and possible recommendations. As this paper's now quite old, it could well be that more recent work supersedes it. This was all for population based stuff, and nothing about trials where researchers want to show the efficacy of particular treatments.
     
  18. Bob

    Bob

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    Here are the useless responses (just re-posting them in this thread, in case anyone missed them):
    http://forums.phoenixrising.me/index.php?threads/responses-to-pace-questions.17587/
    http://www.meactionuk.org.uk/Responses-to-PACE-questions-CoM.htm
     
  19. Dolphin

    Dolphin Senior Member

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    Do you have the 226-page protocol file: http://www.mediafire.com/view/?w9whdn7hh112b7y ? It is useful to answer similar questions.
    Unfortunately, I don't think it's clear in this case. My guess is they were written answers for those questionnaires.
     
  20. Dolphin

    Dolphin Senior Member

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    Thanks. Interesting.
    I think this level of correlation would likely hold for the initial assessment, before therapy.

    The question is whether the correlation would be quite as strong for future assessments. I think it is possible that the individual therapies could have different correlations, as I've said before e.g. some groups, such as CBT or particularly GET, might push themselves a bit harder, for one reason or another, while a group like APT, might push themselves a little less.

    Also, as many people will know from running a middle or long-distance race, it can help to have done it before a few times, so as not to go either too slow or too fast initially. The same person can get different times/do different speeds, depending on how well they work this out. I know this is a walking rather than a running test, but one can walk at quite different speeds. The training effect.
     

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