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Williams, White et al: PACE: Heterogeneity in CFS - empirically defined subgroups [...]

Discussion in 'Latest ME/CFS Research' started by mango, Jan 24, 2017.

  1. Valentijn

    Valentijn Senior Member

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    Very nice of them to finally provide an approximation of the percentage of trial participants who actually had ME :p
     
  2. Hutan

    Hutan Senior Member

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    I know your comment was slightly tongue in cheek Valentijn. But I don't think we can conclude anything about how many of the PACE participants had ME from this categorisation.

    In my family sample of three (we all got ME at the same time), two years after onset, my daughter would fit in to the 'core' subgroup as she was only mildly affected and continuing with school and sport.

    My son and I don't have mood disorders (although I don't know how the PACE people defined mood disorders) but it is quite possible to be diagnosed with a mood disorder and have ME. It has been (incorrectly) assumed at times that my son has anxiety about attending school.

    We both have digestive system issues and joint and muscle pain - so we could fit in to the 'functional somatic syndrome' group.

    We have many symptoms, so we could fit in to the 14% combined features group - again depending on how this was defined.

    We aren't physically inactive but can't do what we did before. I strongly believe in a biomedical cause but my son periodically thinks that if only he could get fit he would be ok.

    So, I actually have no idea how PACE would have categorised my son and I. But I suspect that all three of us would not have been categorised in that final 11% 'avoidant-inactive' subgroup. I think most people in that group would actually be better described as 'severely affected and knowledgeable'.

    These PACE categories don't increase the understanding of ME. They also don't tell us how many PACE participants actually had ME.
     
  3. Tom Kindlon

    Tom Kindlon Senior Member

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    Can anybody get the supplementary file? Perhaps you could post it as an attachment, or alternatively send it to me in a Phoenix Rising message or by email tomkindlon at Gmail dot com. Thank you.

    Edited to add: somebody kindly sent me a copy.
     
    Last edited: Jan 27, 2017
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  4. Dolphin

    Dolphin Senior Member

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    Note that this group had the highest SF-36 physical functioning subscale score, of 45, which meant it was the least disabled on this questionnaire
     
  5. Dolphin

    Dolphin Senior Member

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    Technically it is true that people who undertook the PACE Trial may be different from those who didn't take part. However it tested very specific therapies so I don't like the characterisation of people who didn't take part as having "poor motivation to engage in therapies". It does given insight into how the authors think about such patients and how they might describe them in other situations also.
     
  6. Dolphin

    Dolphin Senior Member

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    Good that these points are specifically highlighted:
     
    Last edited: Mar 29, 2017
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  7. Tom Kindlon

    Tom Kindlon Senior Member

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    Has anyone a copy of this? I don't think it has been published and it has been hard for me to find a copy (I have tried to look for it in the past).

    Perhaps you could post it as an attachment, or alternatively send it to me in a Phoenix Rising message or by email tomkindlon at Gmail dot com. Thank you.
     
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  8. alex3619

    alex3619 Senior Member

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    Funny, but about a ten fold increase occurs when you move from ME to very weak definitions. That is why it goes from 0.2-0.4% of the population to over 2%, though the exact number varies by study. Whoda thunk it would happen here?
     
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  9. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I did find a description of some of the scales and questions here on page 4:
    http://dx.doi.org.sci-hub.cc/10.1016/j.jpsychores.2010.04.009
    Reference #41 leads to nowhere:
     
    Last edited: Jan 28, 2017
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  10. Countrygirl

    Countrygirl Senior Member

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    Now for a bit of light relief (we need something after all this pubished codswollop!) which I posted last year:

    PACE

     
  11. Esther12

    Esther12 Senior Member

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    I'd forgotten about this paper, but just saw that it's out in the June issue of Psychological Medicine (the same journal that published the PACE recovery paper).

    The abstract makes it sound like the obvious thing to do would be to also look at differences in outcomes for their sub-groups and see if their were big differences.
     
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  12. slysaint

    slysaint Senior Member

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  13. slysaint

    slysaint Senior Member

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    Also published in July:
    https://kclpure.kcl.ac.uk/portal/fi...OADES_Publishedonline9March2017_GREEN_AAM.pdf

    Includes explanation of the form of CBT used for CFS/ME. And lest we forget who's theory it's all based on:

    "Wessely’s model of CFS/ME postulates that a heightened focus on illness (and physiological symptoms perceived to be related to illness) reinforces an individual’s belief that they have an acute and potentially dangerous
    disease, and as a result, they decrease their activity levels(Butler, Chalder, Ron, & Wessely, 1991)".

    eta:
    [​IMG]
    .
     
    Last edited: Aug 3, 2017

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