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Implementing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic E

Discussion in 'Latest ME/CFS Research' started by Denise, Jun 4, 2016.

  1. Denise

    Denise Senior Member

    Apologies if this has been posted elsewhere (please delete if it has been):

    Implementing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in primary care: A qualitative study

    • Kerin Bayliss
    • Lisa Riste,
    • Rebecca Band,
    • Sarah Peters,
    • Alison Wearden,
    • Karina Lovell,
    • Louise Fisher and
    • Carolyn A Chew-Graham
    BMC Family PracticeBMC series – open, inclusive and trusted201617:66
    DOI: 10.1186/s12875-016-0453-8

    © Bayliss et al. 2016

    Received: 3 November 2015

    Accepted: 9 May 2016

    Published: 4 June 2016


    Previous research has highlighted that many GPs lack the confidence and knowledge to diagnose and manage people with CFS/ME. Following the development of an online training module for GPs, and an information pack and DVD for patients, this study explored the extent to which these resources can be implemented in routine primary care.


    Semi structured qualitative interviews were completed with patients and GPs across North West England. All interviews were transcribed and analysed using open exploratory thematic coding. Following this thematic analysis, the authors conducted a further theory-driven analysis of the data guided by Normalisation Process Theory.


    When used in line with advice from the research team, the information resource and training were perceived as beneficial to both patients and GPs in the diagnosis and management of CFS/ME. However, 47 % of patients in this study did not receive the information pack from their GP. When the information pack was used, it was often incomplete, sent in the post, and GPs did not work with patients to discuss the materials. Only13 out of 21 practices completed the training module due to time pressures and the low priority placed on low prevalence, contentious, hard to manage conditions. When the module was completed, many GPs stated that it was not feasible to retain the key messages as they saw so few patients with the condition. Due to the complexity of the condition, GPs also believed that the diagnosis and management of CFS/ME should take place in a specialist care setting.


    While barriers to the implementation of training and resources for CFS/ME remain, there is a need to support CFS/ME patients to access reliable, evidence based information outside primary care. Our findings suggest that future research should develop an online resource for patients to support self-management.

    Chronic fatigue syndrome (CFS) Myalgic Encephalomyelitis (ME) Resources Training Implementation Qualitative research Primary health care
    MeSci, Dolphin, Esther12 and 3 others like this.
  2. JaimeS

    JaimeS Senior Member

    Silicon Valley, CA
    Fascinating how doctors perceived ME as something super-rare that they were unlikely to encounter in practice. Very wrong idea, but then I noted that one physician stated they probably didn't diagnose it often because of the 'associations' with "CFS/ME" as they call it here.

    I also liked the comment that even to those who believed it psychiatric, ME was a 'low priority' diagnosis: not as serious as someone having a schizophrenic episode!

    I can't speak to the quality of the materials they handed out, but this paper is how qualitative research should be done. It reveals points of view that are new and interesting, and clearly do not originate with the authors.

    Chezboo, MeSci, Dolphin and 4 others like this.
  3. Esther12

    Esther12 Senior Member

    This is here, but I can't access it:

    Reading that made me think 'bet their outcomes were poor'. I've not been able to see anything about whether they released any data on what impact METRIC had on patient's health (which one would think is important).

    I think that the transcripts of comments from GPs would have been more interesting than the paper, just because its always interesting to get a look at what GPs say about ME/CFS in private. Some quotes:

    Bit of a relief to have GPs not take the information packs seriously tbh. Some of this stuff is pretty funny:

    Where's the evidence that they actually were offering something of value to patients though?!

    Thought this was a bit interesting:

    What evidence is there that there the implementation of these CFS/ME resources in primary care would have helped patients recover?

    That rules out Wearden.

    How did it do that?
  4. Esther12

    Esther12 Senior Member

    Is something odd going on with the open peer review for this paper?

    @Tom Kindlon pointed to this peer review:
    That's the only peer review available [edit: there's also another peer review report which only shows up half the time], and it doesn't really match up with the responses (or sound like a recommendation for the paper to be published).

    Got to agree with

    Last edited: Jun 6, 2016
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  5. Dolphin

    Dolphin Senior Member

    There is also this review:

    Yes I agree that the review from Muhammad Alotaibi is very weird.
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  6. Esther12

    Esther12 Senior Member


    I thought I saw that second review yesterday, but today it was not there: reviews weirdness.JPG

    Oh well. It's back again now.

    Strange that there was not more discussion about whether the conclusions drawn are adequately supported by the data shown imo. Seems like we're missing pieces of the review process.
    Dolphin likes this.
  7. Dolphin

    Dolphin Senior Member


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