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How useful are the United Kingdom NHS ME/CFS clinics?

Discussion in 'General ME/CFS News' started by Adrian, Sep 11, 2021.

  1. Adrian

    Adrian Administrator Staff Member

    Posts moved from NICE pauses publication of updated ME/CFS guideline hours before publication was due - 17th August 2021

    As far as we know they don't seem to do much in terms of follow up. They seem to do 'patient satisfaction surveys which come out well for them and perhaps some other subjective measures. I don't believe they do any real follow up (appointment wise) and not in the long term. But it would be really interesting to hear about follow up from people who have attended clinics.

    In terms of research there is work on a national outcomes database (done by Crawley and Collins) and I don't think their results were great.
    Some discussion here UK: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis National Outcomes Database | Science for ME (s4me.info)

    Here is one paper on outcomes (Crawley etc) Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database | QJM: An International Journal of Medicine | Oxford Academic (oup.com)

    Worth noting poor follow up (51%). Its intended to be a 12 month follow up but data is given between 6 and 24 months and then they fitted a statistical model to adapt to a 12 month time (I think and I'm not convinced this is a valid thing to do). Follow up is subjective measures. And similar or worse than trials!

    This paper
    Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England | BMC Health Services Research | Full Text (biomedcentral.com)
    Gives some more measures (I think on the same data) and they claim "
    but I don't think that is really justified. I think table 3 is interesting as it sets out changes in work/education but of course there are issues in that there is no control group, some patients didn't receive many sessions and many drop outs.

    Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England | BMC Health Services Research | Full Text (biomedcentral.com)

    Another paper from Crawley (I think same data + some dutch data
    manuscript_for_PURE.pdf (bris.ac.uk)

    Then there was a BACME survey
    CFS/ME National Services Survey Feb 2018 (bacme.info)
    (or possibly a series of them). I did look a week or so ago but can't remember anything interesting.

    I do wonder if it is worth us looking at such papers and summarizing an opinion as this seems to be the data they would rely on. Opinions both in terms of the quality of data, follow up rates, times and questions and hence the possible bias as well as the actual results.
    Last edited by a moderator: Sep 13, 2021
    Simon M, Michelle, Woolie and 13 others like this.
  2. dave30th

    dave30th Senior Member (Voting Rights)

  3. dave30th

    dave30th Senior Member (Voting Rights)

    When they have poor follow-up, they seem to overlook this and tend to report results without taking them into account. This was what Brian and I found with the CBT paper published by Chalder, Wessely and company based on clinic data.

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