United Kingdom: ME Association news

Discussion in 'News from organisations' started by Peter Trewhitt, Feb 8, 2021.

  1. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    they have a number of projects
    Current projects

    sorry I've not been following this thread but, why don't the MEA liaise with MERUK on research??
     
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  3. Trish

    Trish Moderator Staff Member

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    They probably do. I think I recall the have jointly funded some research.
     
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  4. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Here are the research studies ME Research UK are currently funding:
    https://www.meresearch.org.uk/2023-24-our-charity-year-in-review-investing/

    It includes
    • Project 66 (offered prior to 31st Oct 2023 and accepted post 1st November 2023).
      Prof. Fatima Labeed, University of Surrey, UK, “The Electrophysiology of ME/CFS: Development of an Electrical Model for Exploration and Diagnosis.” (joint grant with the ME Association).
     
    Last edited: Jan 2, 2025
    Simon M, MEMarge, Missense and 6 others like this.
  5. Nightsong

    Nightsong Senior Member (Voting Rights)

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    Something I mentioned before, but didn't go into much detail about, were the problems with the patient leaflets on MEA's website. While they are higher quality than those put out by many other organisations, and there is lots of sensible and practical advice, there are plenty of occasions where what is written is just not sound, and there are a few more significant errors as well. I haven't been able to do more than skim, so just a few random examples:

    There are a number of occasions where "supplements" are recommended, such as:
    and similar content in this Treatment of ME/CFS document. There are a number of questionable treatment claims in this leaflet on pain management, e.g.
    There are epidemiological statements that are wrong, too, such as:
    from this leaflet. There's some bunk about neuroinflammation and coenzyme Q10 in this cognitive-dysfunction leaflet; and plenty of simply wrong claims made in this POTS leaflet. There are the claims I mentioned on the other thread about pseudoseizures. There is also incorrect information about some medications, e.g. in this pain management leaflet:
    No it doesn't! The gabapentinoids are structurally related to GABA but are thought to act by their effects on voltage-dependent calcium channels (specifically as α2δ ligands); they do not act as GABA agonists or positive allosteric modulators.

    If anyone with more energy than I have would like to review them the leaflets are all now available for download here; I'm sure anyone who does will find many more examples of things that require revision:

    https://meassociation.org.uk/free-literature-downloads/
     
  6. MrMagoo

    MrMagoo Senior Member (Voting Rights)

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    These matters would be great for @ME/CFS Skeptic to cover (if not done so already)
     
  7. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    It may have been posted here but in case not the MEA are advertising for a part time Communications Office

    see https://meassociation.org.uk/2025/01/situations-vacant-communications-officer/?
     
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  8. Hutan

    Hutan Moderator Staff Member

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    It certainly would be great if someone with ME/CFS who is aware of the issues we regularly talk about here was appointed to the role. Having ME/CFS, or caring for someone with ME/CFS should be seen as an important qualification for the role, not a problem.
     
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  9. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    The current Communications Officer, Kelly,

    https://meassociation.org.uk/mea-team/

    "joined the MEA Communications team in 2024, working on social media and the MEA website."

    "has a background in Digital Marketing and has worked with both businesses and social enterprises to develop and maintain their websites and social media."

    "Having lived with ME for many years, Kelly has a huge amount of empathy for others living with chronic illness and is excited to be working with the ME Association to support them in the essential work they do to help people living with ME/CFS and Long Covid."
    It's unclear whether this vacancy is being advertised because the current Communications Officer is leaving or whether an additional Communications Officer is being sought. The pro rata salary isn't great but you can work from home.
     
    Last edited: Jan 7, 2025
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  10. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    https://twitter.com/user/status/1876660716507197930


    ME Association@MEAssociation
    Blog Survey: Requesting information about your ME/CFS Diagnosis The ME Association invites you to complete our survey relating to diagnosis; looking at before and after the 2021 NICE Guideline on ME/CFS. We are conducting the survey to try to find out if:

    - People are being diagnosed earlier
    - More attention is being paid by doctors to make sure other possible causes of ME/CFS type symptoms are excluded
    - People are being referred by GPs to an ME/CFS specialist service to ensure the diagnosis is correct and a care and management plan is prepared.

    Take part in the survey: https://meassociation.org.uk/diag #pwME #MECFS #MyalgicEncephalomyelitis #LongCovid #PostCovid #Diagnosis #MECFSSurvey
    4:02 PM · Jan 7, 2025

    ---------------------------------

    "People are being referred by GPs to an ME/CFS specialist service to ensure the diagnosis is correct and a care and management plan is prepared."

    Pfff!
     
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  11. MrMagoo

    MrMagoo Senior Member (Voting Rights)

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    Also laugh out loud lol from me.
    Although, if there is somewhere doing care and management plans, this might show us where. I assume they are done in the following parts of the UK-
    Narnia
    The visiting world at the top of the Faraway Tree
    Never Never Land

    Appointments are at a billionty past three on the tenth of never.
     
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  12. Kitty

    Kitty Senior Member (Voting Rights)

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    According to our local group, a recent attendee reported that our service still runs sessions lasting two and a half hours. Including dance therapy.

    My GP advised me against being referred to it because they expected people to do dance and movement, and that was twenty-six years ago.

    You'd almost think nothing had happened since then.
     
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    It does make you wonder whether anyone at MEA has a clue, doesn't it.
    MEA seems to be in danger of turning into a BACME cheerleader troop.
     
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  14. Kitty

    Kitty Senior Member (Voting Rights)

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    I was hacked off when I received my care plan some years ago, which was blank apart from my name, address, and date of birth. I refused to sign it.

    I was being unreasonable. There is no care or management for ME/CFS, and the lack of content was accurate and appropriate.
     
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  15. MrMagoo

    MrMagoo Senior Member (Voting Rights)

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    That’s two questions in one on the survey proper. Very poor way to phrase a survey question.
     
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  16. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  17. Ash

    Ash Senior Member (Voting Rights)

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    Last edited: Jan 7, 2025
  18. MrMagoo

    MrMagoo Senior Member (Voting Rights)

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    Not many responses yet, will be interested to see the final output
     
  19. Ash

    Ash Senior Member (Voting Rights)

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    Yeah. When’s that due?
     
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  20. Fainbrog

    Fainbrog Senior Member (Voting Rights)

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    Last edited by a moderator: Jan 13, 2025

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