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ME/CFS Medical Education Campaign UK - UK website and blog by Katie Johnstone

Discussion in 'Advocacy Projects and Campaigns' started by Sly Saint, May 8, 2023.

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  1. Hutan

    Hutan Moderator Staff Member

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    Very well said @Lou B Lou. There's a lot of misinformation about. Even resources that many people would think are useful have problems (for example the StudyPRN course that Nina Muirhead co-authored). The conferences from international organisations such as IACFS/ME; the presentations of the Medical Advisors of national advocacy groups (e.g. Emerge and ANZMES).... It's one of the most difficult problems, that even within the local, national and international groups where people with ME/CFS should have control of the narrative, misinformation prevails.
     
    Hutan, Jul 21, 2023
    #41
    Ash, Peter Trewhitt, obeat and 9 others like this.
  2. Lou B Lou

    Lou B Lou Senior Member (Voting Rights)

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    @Katie - ME/CFS Med Ed

    Continuing concerns about advising trainee doctors to contact local ME Groups for education and information about local ME/CFS Services.


    In addition, not all patients are assertive, by nature or because they are simply too sick and can't sustain making an argument, even though the patient may be very well informed.


    Some patients just don't quite like to criticise their local service, because the therapists were nice to them and appeared to believe the patient (we do know in some/many/most ME/CFS services the 'listening and believing' by the therapists is purely an act, to gain trust and compliance).


    Also some patients don't quite like to criticise their local ME/CFS service because they were given a diagnosis by the service after being undiagnosed for years and feel grateful ...... or don't like to criticise the service because patients are totally dependent on letters from their ME/CFS service as evidence for vital benefits (ESA/PIP), for evidence for a care package, in some cases for evidence for suitable housing and for a range of other vital needs. Such letters may not actually reflect the patients actual level of illness, or reflect the patient's actual symptoms and range and levels of disability. But those letters from the ME/CFS clinics are all the patient has in terms of medical evidence. This creates great dependency on the ME/CFS service even when the quality of 'treatments' and the accuracy of the assessment of patients illness/symptoms/disabilities is very poor.


    I have similar reservations about turning to local universities' Disability Groups for education for trainee doctors. Any members with ME *may or may not* be informed, may or may not be misinformed.
     
    Last edited: Jul 22, 2023
    Lou B Lou, Jul 22, 2023
    #42
    Ash, Peter Trewhitt, Simbindi and 9 others like this.
  3. ahimsa

    ahimsa Senior Member (Voting Rights)

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    Merged thread

    The ME/CFS Medical Education Campaign is asking folks to sign an open letter:

    https://mecfs-med-ed.org/2023/08/04/please-sign-our-open-letter-to-the-uk-medical-schools/

     
    Last edited by a moderator: Aug 5, 2023
    ahimsa, Aug 4, 2023
    #43
    Hutan, Peter Trewhitt, MeSci and 6 others like this.
  4. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Peter Trewhitt, Feb 8, 2024
    #44
    alktipping, SNT Gatchaman, Hutan and 10 others like this.
  5. Sean

    Sean Moderator Staff Member

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    BACME, whatever they are, are not our friends. They should be disbanded.
     
    Sean, Feb 8, 2024
    #45
    alktipping, SNT Gatchaman, Hutan and 5 others like this.
  6. Hutan

    Hutan Moderator Staff Member

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    Location:
    Aotearoa New Zealand
    BACME appears to be a 'professional organisation', as in, an organisation set up to support a certain group of people who earn their living in a particular way, like an association of engineers, or occupational therapists. Do professional organisations normally qualify for grants from that NL Community Fund?

    It makes me wonder why the main UK ME/CFS charities (e.g. Forward-ME) put up with the ongoing harm caused by BACME. Why is there not ongoing pressure on BACME to improve their materials, which remain unacceptably bad? If there is no response, the charities could contact the NL Community Fund and express concern about the activities of BACME and ask that they not be given funding until their materials are based on evidence and compliant with the NICE Guideline. The charities do have power, particularly if they work together.

    That document "An introduction to dysregulation in ME/CFS" would be laughable if it was not still influencing the care of people.
    e.g. the conclusion is an approach that sounds like symptom-contingent Graded Activity Therapy to me:
     
    Hutan, Feb 8, 2024
    #46
    bobbler, Sean, alktipping and 5 others like this.
  7. Lou B Lou

    Lou B Lou Senior Member (Voting Rights)

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    I did contact @Katie - ME/CFS Med Ed via twitter and after some discussion she did remove the suggestion for trainee Drs to contact their local ME groups for education about ME. I do appreciate ME/CFS Med Ed's work since then.
     
    Lou B Lou, Feb 8, 2024
    #47
    Ash, Trish, JemPD and 3 others like this.
  8. Trish

    Trish Moderator Staff Member

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    I suspect the members of BACME would regard the professional associations for their profession, ie OT's, physios, CBT therapists etc as their professional organisation. BACME seems to be more of a grouping of people across health professions who treat ME, for them to share ideas produce materials and hold meetings. I don't think it would handle things that professional organisations handle like employment issues and registrations.
     
    Trish, Feb 8, 2024
    #48
    bobbler, Lou B Lou, Hutan and 2 others like this.
  9. Trish

    Trish Moderator Staff Member

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    UK
    Some posts have been moved to the Forward ME thread.
     
    Trish, Feb 19, 2024
    #49
    alktipping and Peter Trewhitt like this.
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