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.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Have set this up in its own thread because although it initially seemed to be on US it is UK based.

    https://mecfs-med-ed.org/about-us/
     
    Last edited: May 8, 2023
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  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    medical education, NHS
    The NHS must provide mandatory training on ME/CFS – our submission to the APPG
    3rd May 2023 Katie Johnstone
     
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  3. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Not sure who is behind this group, as the website doesn't give any details. Could be Nina Muirhead, but the last I heard she was still in a bad relapse and wasn't able to do much advocacy.
     
    Last edited: May 8, 2023
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  4. Kitty

    Kitty Senior Member (Voting Rights)

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    Odd, isn't it? I do understand it, given the history and the fact that those running it might be ill and have no capacity for direct engagement, but it still feels ... unusual.
     
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  5. Trish

    Trish Moderator Staff Member

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    A quick glance through the website looks pretty good. Maybe it's a spin off from the parliamentary groups set up by Sajid Javid or from the CMRC or Doctors with ME. At least it doesn't seem to be plagued with the problems of some of the DwME materials.
    I think it's excellent that there is a group working on this, and by the look of it, getting a lot of it right. I just hope they have the heft at high level to actually influence medical education, and that should not just be for doctors, but for psychologists, OT's, dieticians, nurses and physios as well.
     
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  6. CRG

    CRG Senior Member (Voting Rights)

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  7. Trish

    Trish Moderator Staff Member

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    It's not clear whether these two things are related. Is it the Medical Education Campaign, whoever they are, who have made a submission to the APPG that Katie Johnstone, whoever she is, writes about? And does that have anything to do with the parliamentary groups set up by Javid?
    It's all very confusing.

    Edit: On the sustack articles by Katie Johnstone, she says she has been busy working on the Medical Education Campaign, but doesn't say who with.
    https://mecfs.substack.com/p/mecfs-medical-education-campaign
     
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  8. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    I think Katie is probably running the campaign.
     
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  9. Trish

    Trish Moderator Staff Member

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    If that's so, I wonder whether she has any standing with the NHS or the government and whether she's coordinating with others.
     
  10. CRG

    CRG Senior Member (Voting Rights)

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    I can't see any evidence that this is other than an individual effort using material authored by Nina Muirhead which has been submitted to various authentication bodies for the CPD certificate. How diligent the authentification is I've no idea, but these are fee based services. No actual need for NHS or Gov involvement at any point.
     
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  11. Hutan

    Hutan Moderator Staff Member

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  12. CRG

    CRG Senior Member (Voting Rights)

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    The link is on this page: https://mecfs-med-ed.org/about-us/ right hand side = Free 1-hour CPD course The module seems to have been available since 2020 - at least according to the reviews at the bottom of the StudyPRN page.
     
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  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    As far as I am aware this has nothing to do with the Javid initiative which involves working groups of which I am a member.

    I am doubtful that this way of presenting things is going to help. We are not told who in involved which means that to the medical profession it will simply look like an anonymous pressure group.

    The mission statement says:
    • Every undergraduate medical student in the UK must receive evidence-based training on ME/CFS such that they are fully prepared to diagnose and treat ME/CFS patients in line with the NICE guidelines.
    • Every doctor working for the NHS must undertake mandatory training on ME/CFS such that they are fully prepared to diagnose and treat ME/CFS patients in line with the NICE guidelines.
    But this is totally unrealistic. ME is of similar prevalence to RA, or MS and much less common than macular degeneration or otitis media. The great majority of NHS doctors do not train to diagnose or treat these. An obstetrician does not expect to diagnose otitis media or rheumatoid arthritis.

    It is very appropriate that general practitioners and physicians, specifically, should be aware of the diagnosis. But even there only a very few are likely to be involved in treatment - especially as there isn't really any.

    Why should doctor undertake mandatory training in ME rather than a hundred other things?

    In many ways what is needed is for the vast majority of NHS doctors to understand that they are not competent, and are never likely to be competent, to diagnose and treat ME and should collectively ensure that some specialists are trained to do so. For GPs to think that they know what to do seems to me to be a nonsense. Managing a condition like ME requires people with specialised experience in the condition.

    I am afraid that I get the impression that the author(s) have no real idea what it is they want.
     
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  14. JemPD

    JemPD Senior Member (Voting Rights)

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    I agree that every doctor shouldnt be able to dx ME/CFS, thats absurd & actually impossible anyway. But i wonder if perhaps what they want (certainly what I wish were the case), is for every Dr/health professional to be re-educated that its not imaginary/malingering/conversion disorder. So that when we run into them getting treatment for other things we are treated with the same attitude as someone with say an MS or RA label, rather than the current state of affairs, where they all think they DO know all about it, & therefore at best we are treated with a barely hidden eye roll, & at worst with outright derision & abuse. They wouldnt dream of doing avoidable things which made someone's MS worse, but they seem to actively enjoy not giving a monkey's about us.

    If we are facing major surgery for something else, we shouldnt be more scared of the way we are going to be abused by nurses/doctors/HCAs while in hospital, than we are of having he actual surgery, for example.
     
  15. Willow

    Willow Established Member (Voting Rights)

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    Or when you go to your primary care physician who concludes you are depressed when you are not.
     
  16. JemPD

    JemPD Senior Member (Voting Rights)

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    or when you actually are depressed, dangerously so, but you darent tell your GP & ask for help, because if you do from then on all your Me/CFS symptoms (that you've had for 20 yrs) will be suddenly reframed as depression.

    in my opinion its accurate awareness of what ME/CFS actually is & what it involves for the patient (ie QOL impact & especially that ME/CFS equals CF equals TATT) that is needed, not the ability to Dx/treat it.

    But its easy to crit from here, i didnt start a campaign, so well done to whomever did
     
  17. Milo

    Milo Senior Member (Voting Rights)

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    I would not be too happy if certain individuals were involved in teaching said course, for instance, Clare Gerada, or Trudie Chalder or any of their contacts. Who is presenting the information and what are their conflicts of interests matter a lot.
     
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  18. Trish

    Trish Moderator Staff Member

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    The thread title has been changed to reflect what we know so far about this website.
     
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  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I can't access Linkedin but the brief bit I can see on a search says
    eta: there is an email contact on the website (ME education campaign one); maybe someone could reach out?
     
    Last edited: May 10, 2023
  20. Trish

    Trish Moderator Staff Member

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    Thanks, Sly Saint. I hope Katie Johnstone will link up her campaign with the existing work being done through ForwardME and/or the government groups set up by Sajid Javid. It would be a pity if this wasn't coordinated.
     

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