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Mallet, King, White: A UK based review of recommendations regarding the management of CFS

Discussion in 'Latest ME/CFS Research' started by mango, Aug 16, 2016.

  1. mango

    mango Senior Member

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    A UK based review of recommendations regarding the management of chronic fatigue syndrome.

    Mallet M1, King E1, White PD2.
    1. Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK.
    2. Wolfson Institute of Preventive Medicine, Barts and the London School of medicine and Dentistry, Queen Mary University of London, London, UK. Electronic address: p.d.white@qmul.ac.uk.
    J Psychosom Res. 2016 Sep;88:33-5. doi: 10.1016/j.jpsychores.2016.07.008. Epub 2016 Jul 17.
    DOI: 10.1016/j.jpsychores.2016.07.008

    Abstract

    OBJECTIVES:
    Chronic fatigue syndrome (CFS) is a controversial illness, with apparent disagreements between medical authorities and patient support organisations regarding safe and effective treatments. The aim of this study was to measure the extent of different views regarding treatments, comparing patient support organisations and medical authorities in the UK.

    METHODS:
    Two independent raters analysed two groups of resources: UK patient support websites and both medical websites and textbooks. A 5-point Likert scale was developed with the question 'With what strength does the source recommend these treatments?' The various treatments were divided into the following four groups: complementary and alternative medicine (CAM), pharmacological, rehabilitative, and pacing therapies.

    RESULTS:
    There were significant differences between the scores for patient support organisations and medical sources for all 4 treatment groups. The results for supporting CAM were 74% (patient group) vs 16% (medical source) (p<0.001), 71% vs 42% for pharmacological (p=0.01), 28% vs 94% for rehabilitative (p<0.001) and 91% vs 50% for pacing treatments (p=0.001).

    CONCLUSIONS:
    There were substantially different treatment recommendations between patient support organisations and medical sources. Since expectations can determine response to treatment, these different views may reduce the engagement in and effectiveness of rehabilitative therapies recommended by national guidelines and supported by systematic reviews.

    KEYWORDS:
    Chronic fatigue syndrome; Management; Myalgic encephalomyelitis; Recommendations; Treatment

    http://www.ncbi.nlm.nih.gov/pubmed/27521650
     
    Last edited: Aug 16, 2016
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  2. Wildcat

    Wildcat

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    .
    Thanks for posting this Mango. PDWhite still hanging in there. He is still pitting patients against doctors/medical authorities and vice versa. I can see years more of pointless useless research to occupy his time, and consume precious research funding.
     
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  3. JaimeS

    JaimeS Senior Member

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    People looking to actively manage their own conditions talk more about over-the-counter treatments. Another shocker by White et al. Weird, actually, that they'd compare medical sites to patient forums such as this one -- it's apples to oranges.

    I mean, I get what they're trying to imply by doing so, but...

    -J
     
  4. TiredSam

    TiredSam The wise nematode hibernates

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    Well he's prolific, I'll give him that. But all eyes are on another publication today ...
     
  5. mango

    mango Senior Member

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    Comment on Pubmed Commons by Ellen M Goudsmit:
    Continue reading:
    http://www.ncbi.nlm.nih.gov/pubmed/27521650#cm27521650_23026
     
  6. JaimeS

    JaimeS Senior Member

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    Well done, Ellen!
     
  7. Keith Geraghty

    Keith Geraghty Senior Member

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    "Since expectations can determine response to treatment, these different views may reduce the engagement in and effectiveness of rehabilitative therapies recommended by national guidelines and supported by systematic reviews."

    the Jr of Psychosomatic Research seems to be the go-to journal for this sort of stuff. I will write an alternative conclusion "Since patients with CFS/ME dont agree with medical texts that CBT and GET are the best treatments for ME/CFS, doctors should start listening to patients, respect their views and ask why patients with the illness feel this way?"

    the use of stats and statistical significance attached to a made up likert scale of subjective opinions by these authors on what constitutes 'recommendations' is just stretching the boundaries of statistics to the ridiculous
     
    Last edited: Aug 16, 2016
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  8. halcyon

    halcyon Senior Member

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    I believe the term is "home field advantage". Sharpe, Wessely, and White are all on the journal's advisory board.
     
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  9. TiredSam

    TiredSam The wise nematode hibernates

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    I didn't know that, well spotted. Why is it that instead of being shocked and horrified when I read that, all I did was raise a weary eyebrow?
     
  10. A.B.

    A.B. Senior Member

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    They're trying to play the "evidence based" card, hoping to deceive the public which does not yet know that the evidence doesn't actually support CBT/GET, as seen in the recent addendum to the AHRQ review on the topic. When PACE falls apart, there will be nothing left in favor of CBT/GET except Oxford criteria based studies, presumably all with substantial weaknesses such as lack of blinding. They're actually only a few steps away from total discreditation.
     
    Last edited: Aug 17, 2016
  11. justy

    justy Donate Advocate Demonstrate

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    have I missed something?
     
  12. Hutan

    Hutan Senior Member

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  13. JaimeS

    JaimeS Senior Member

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    ....explains a lot. I wonder which of them picked the colour scheme. Based on previous conjecture, it's just GOT to be that Chalder had some say in the matter... That IS the one with the hot-pink cover, amirite?

    I feel a book deal coming on, actually. Someone commented recently that all the BPS nonsense was slipping into the 'pulp pop science' category, something to be eagerly read by lay-public who find illness and the psyche just fascinating but have never taken a course in the hard sciences since high school.

    They'll just keep sinking until they find an audience that:

    1) Hasn't heard of them, yet
    2) Doesn't have the scientific background to refute their 'common sense' psychiatric methodology

    I'm serious. I think that White et al. will be just fine.
     
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  14. justy

    justy Donate Advocate Demonstrate

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  15. TiredSam

    TiredSam The wise nematode hibernates

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    Sorry - thought you were joking! Otherwise I'd have let you in on the big news immediately, of course :).
     
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  16. Snow Leopard

    Snow Leopard Hibernating

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    "Since expectations can determine response to treatment,"[citation needed]

    ;)

    Expectations may alter questionnaire answering behaviour, but does it alter objective measures of functioning. (current evidence suggests it doesn't)
     
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  17. Denise

    Denise Senior Member

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    I wonder why we have to talk about OTC treatments....
    Could it have ANYTHING to do with there not being FDA (comparable agency in other countries)-approved treatments?
    Or that we are actively trying to manage our condition given that healthcare professionals aren't trained (appropriately) to do so?

    Nah! Didn't think so. (<---- sarcasm)
     
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