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A UK based review of recommendations regarding the management of CFS

Discussion in 'Latest ME/CFS Research' started by Daisymay, Jul 25, 2016.

  1. Daisymay

    Daisymay Senior Member

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    http://www.jpsychores.com/article/S0022-3999(16)30349-X/abstract

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

    Journal of Psychosomatic Research, September 2016 Volume 88, Pages 33–35


    Miriam Mallet, Eleanor King, Peter D. White


    Highlights
    • There were marked discrepancies between patient and professional sources' views on treatment recommendations.
    • Patient organisations preferentially recommended medicines, pacing and complementary treatments
    • Medical organisations recommended rehabilitation therapies

    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.
     
  2. Daisymay

    Daisymay Senior Member

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    But wait a minute.....in the PACE trial participants in the CBT and GET groups were fed positive expectations of benefit from these treatments via newsletters, patient manuals and from the practitioners, while those in the SMC and adaptive pacing groups weren't given the same positive expectations.

    So if the power of expectation is so strong that it can "determine the response to treatment" perhaps the minimal benefit of CBT and GET (which evaporated over time) was actually down to the differing manipulation of patient expectations betweeen the four arms of the trial and had nothing whatsoever to do with CBT or GET, as they claim?

    Not surprisingly the PACE authors didn't mention this power of expectations in the PACE trial and how it might have influenced the outcome. And when anyone has brought up the problem of the differing expectations within the trial the authors have either ignored or dismissed the idea.

    Has Professor White not seriously undermined the PACE results with this new paper?
     
    Johannawj, Hutan, Solstice and 6 others like this.
  3. Denise

    Denise Senior Member

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    I believe this is being discussed in this thread http://forums.phoenixrising.me/inde...l-textbooks-and-webs.45847/page-3#post-745887
     
    Esther12 and Invisible Woman like this.
  4. Daisymay

    Daisymay Senior Member

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    Oops sorry, I did check before I posted but missed it.
     
    Esther12 likes this.
  5. Denise

    Denise Senior Member

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    I totally understand missing it. It is good to know that we have multiple members (like you @Daisymay) who find and post relevant articles. Thank you! :)
     
    Daisymay, Esther12 and Comet like this.
  6. Daisymay

    Daisymay Senior Member

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    Thanks Denise, oh to have a fully functional brain again.....

    Could one of the moderators please merge this thread then or delete? Thanks.
     

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