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Devendorf et al. 2017 Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: the physician perspective

Discussion in 'PsychoSocial ME/CFS Research' started by Dolphin, Nov 8, 2017.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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    http://www.tandfonline.com/doi/abs/10.1080/09638288.2017.1383518

    Original Article

    Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: the physician perspective
    Andrew R. Devendorf [​IMG],Carly T. Jackson,Madison Sunnquist &Leonard A. Jason [​IMG]
    Pages 1-8 | Received 06 May 2017, Accepted 19 Sep 2017, Published online: 05 Oct 2017


    Abstract
    Purpose: To inform an operationalised definition of recovery from myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) for research and practice. Without a consensus on defining and measuring recovery, there will continue to be controversy amongst researchers, clinicians, and patients when interpreting treatment outcomes.

    Method: This study explores physicians’ views on recovery from ME and CFS. We conducted semi-structured interviews with 10 physician participants who are experts in the ME and CFS field. Our deductive thematic analysis, using a realist perspective, provided a framework for differentiating recovery and significant improvement.

    Results: Physicians conceptualised recovery as complete symptom remission and a return to premorbid functioning (adjusted for with age), whereas they viewed significant improvement as a substantial reduction in symptoms with considerable functional gains, where patients may operate in daily life but still must cope or be treated.

    Conclusions: Our findings provide recommendations and approaches for measuring: daily functioning, symptomatology, quality of life, and physical functioning.

    • Implications for rehabilitation
    • Physicians viewed recovery as complete symptom remission and a return to premorbid functioning (adjusted for with age).

    • Recovery from myalgic encephalomyelitis and chronic fatigue syndrome should be viewed as multidimensional, considering patients’ daily life, psychosocial functioning, and overall physical functioning.

    • These findings can improve practitioner-client interactions, as they provide recommendations for measuring recovery in research and practice.


    Chronic illness, assessment, prognosis, physical functioning, psychosocial functioning, qualitative
     
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  2. Dolphin

    Dolphin Senior Member (Voting Rights)

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  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    From the blog:

    That Jason paper is saying such obvious things, and so clearly in response to PACE, that it's pretty funny. It's almost a form of trolling... but then, academia seems so rubbish that people do need a peer reviewed paper to refer to in order to recognise the PACE recovery criteria is BS.

    At the Jason paper page, the top 'People also read' is:

    Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial
    Carolyn Wilshire et al.
     
  4. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    The twitter posts that Dolphin kindly provided are:
    1.
    Code:
    https://twitter.com/PaulWhiteleyPhD/status/927445321176797184

    2.
    Code:
    https://twitter.com/TomKindlon/status/928083236626092032
     
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  5. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Can some people not see tweets if the URL is posted in like above?
     
  6. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    It depends on if they have images turned off, and maybe some kind of Javascript blocking.

    It will be a minority, but I don't mind adding the link for accessibility reasons :)

    It might help us with search engine visibility if the words are on the page here, too.

    I've had a couple of requests to put twitter links up, the problem is that for most the embedded image is useful to them.

    Feel free to add to your post if wanted.
     
    Solstice, Esther12 and Dolphin like this.
  7. Trish

    Trish Senior Member (Voting Rights)

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    It sounds like this could be useful ammunition against PACE and other trials/treatments that don't measure things like full return to work and social activity, and objective things like step count.

    I can't access the full paper. I wonder whether it goes into things like what scores on SF-36, Chalder scale etc. would be considered 'recovered' and 'significant improvement'.

    I fear that unless both questionnaire results and quantifiable objective measures are standardised, psych researchers will go on claiming recovery by brainwashing patients to redefine it (as seems to be happening with LP and the weird NLP based stuff Dorset and Oxford ME services are doing.)
     
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  8. Sasha

    Sasha Senior Member (Voting Rights)

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    No shit, Sherlock - but congratulations to the authors for doing this work, ridiculous as the need for it has been.
     

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