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United Kingdom: Nottingham ME/CFS Service

Discussion in 'UK clinics and doctors' started by InitialConditions, Apr 20, 2022.

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  1. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Copied post. This thread has been created to discuss the Nottingham service and their online materials.

    There are some issues with this that I've flagged with FME. They've done the bare minimum and the webpage still needs lots of work.

    Do we have a thread here where we have discussed the material on ME/CFS services' websites (and any literature they distribute to patients)? I'm sure we've discussed it, but I can't find anything.
     
    Last edited by a moderator: Apr 20, 2022
    InitialConditions, Apr 20, 2022
    #1
    alktipping, hellytheelephant and Hutan like this.
  2. Hutan

    Hutan Moderator Staff Member

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    It looks like the service has recently invested further in the idea of exercise being part of the rehabilitation of Chronic Fatigue Syndrome. Their team to deal with CFS seems to consist largely of physios, occupational therapists, rehabilitation exercise practitioners and pain clinicians. So, it's not surprising that they aren't leaping to embrace the new NICE Guideline.

     
    Hutan, Apr 20, 2022
    #2
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  3. Hutan

    Hutan Moderator Staff Member

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    Location:
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    This pdf is what comes up when I google Nottingham ME/CFS service:
    https://picsnhs.org.uk/wp-content/uploads/2019/09/PICS-Community-CFS-ME-leaflet.pdf
    It's titled 'Community Chronic Fatigue Syndrome/ME Pathway' and has a pics label.

    CFS/ME is mostly fatigue
    There are treatment options
    A biopsychosocial approach (they don't seem to have twigged that many patients understand this to say 'we have an outdated understanding of what ME/CFS is').
    Clearly, no staff capable of properly diagnosing ME/CFS and alternative explanations for the symptoms, and there's no intention to try.
    Service offerings are out of date and likely to be both harmful and patronising
     
    Hutan, Apr 20, 2022
    #3
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  4. Kitty

    Kitty Senior Member (Voting Rights)

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    Local ME patients know it's to be avoided like the plague, and some GPs do too. My previous doctor, now sadly long retired, warned me two decades ago that the clinic (in its previous incarnation) mainly offered exercise classes, and someone recently moved to the area mentioned in a WhatsApp round-robin that her new GP had said the clinic wasn't well regarded by patients. Obviously they haven't completely run out of customers, though, otherwise it'd have been discontinued.

    For now, you might argue that the web page is more useful to ME patients as it stands, because it warns them about the underlying philosophy at the clinic. It's this that needs changing.
     
    Kitty, Apr 21, 2022
    #4
    livinglighter, ladycatlover, bobbler and 8 others like this.

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