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United Kingdom: Action for ME (AfME) news

Discussion in 'News from organisations' started by Andy, Jan 7, 2021.

  1. Andy

    Andy Committee Member

    Messages:
    21,814
    Location:
    Hampshire, UK
    Action for M.E. held their AGM last week. They were unable to include the CEO Forward Look and Q&A within the event as planned so have

    "set a date for a webinar on 28 September 2021, 3 – 4pm where you can hear from our Chief Executive, Sonya Chowdhury and Medical Advisor, Dr David Strain, about our exciting plans for the future. You can register for the webinar by following this link: https://us02web.zoom.us/webinar/register/WN_wEpAuOZBQtupqIDH__Ld0w

    We will do our best to answer all questions within the webinar itself. If you would like to submit a new question please email this to media@actionforme.org.uk by 10am on the day of the webinar."

    Attached is their annual report 20-21.
     

    Attached Files:

  2. CRG

    CRG Senior Member (Voting Rights)

    Messages:
    1,857
    Location:
    UK
    Amw66, ladycatlover, MEMarge and 4 others like this.
  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    Last edited by a moderator: Sep 9, 2021
    MEMarge, ukxmrv, DokaGirl and 6 others like this.
  4. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    Messages:
    1,580
    Location:
    North-West England
    The short comment form for the AfME / M.E. Trust merger closes tomorrow morning. I've just sent some brief comments.
     
  5. Daisy

    Daisy Senior Member (Voting Rights)

    Messages:
    306
    Location:
    Suffolk
    I commented on this too, both directly to the M.E. Trust (I use the physio services) and via the online form.

    Had an email from the M.E. Trust this morning saying that the respective boards have decided to go ahead with the merger. Very sad this is happening.

     
  6. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,735
    Location:
    UK
    Thanks for the update @Daisy.

    Just to clarify, who was the email signed by, ie who is going to be the new "Director of Healthcare Services".
     
  7. Daisy

    Daisy Senior Member (Voting Rights)

    Messages:
    306
    Location:
    Suffolk
    @MEMarge

    Sorry for the omission - the email was sent by Helen Winning, CEO of the M.E. Trust.
     
  8. Haveyoutriedyoga

    Haveyoutriedyoga Senior Member (Voting Rights)

    Messages:
    345
    Could you point me to more information about the Bristol clinic's part here please? I went through the Bristol clinic.

    Thanks
     
    ladycatlover and alktipping like this.
  9. Trish

    Trish Moderator Staff Member

    Messages:
    51,890
    Location:
    UK
    AfME is based in Bristol, and has in the past had a close association with a Bristol ME/CFS clinic, with their staff producing or being involved with producing some of AfME's advisory materials for people with ME/CFS and for clinicians. It's a while since I have had time to look at their website. We have had some discussions on various threads on the forum about particular materials, some of which have been updated or removed. I don't know the current relationship between AfME and the Bristol clinic.
    Here's a list of threads with AfME tagged.
    https://www.s4me.info/tags/afme/
     
    Last edited by a moderator: Dec 1, 2021
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    Action for M.E. - Long Covid and Myalgic Encephalomyelitis

    This webinar is in place of the AGM Forward Look and Q&A that could not take place as planned on 2 September 2021.


    https://www.youtube.com/watch?v=YjJgouMq_xM


     
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    19:17 Dr Strain talks about the PACE trial
     
    oldtimer, MEMarge, cfsandmore and 2 others like this.
  12. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    4,990
    Nice to see this.
    Small quibble: I'm sceptical about the idea that the PACE Trial investigators are not to blame for using the Oxford criteria, that they used it because of advice they got? I know, for example, that Peter White is very much his own man and would consider himself very knowledgeable and not in need of advice on this topic, nor the sort of person who lets himself get dictated to by others.
     
  13. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

    Messages:
    885
    Good faith? I guess it's sometimes difficult to tell whether the BPS brigade are quacks or con men. There's a video of Peter White slagging off the CCC because it has "too many" symptoms and he says the more symptoms there are, the more likely the illness is psychiatric. Basically trying to put patients off using stricter criteria.

    I wonder whether AfME think it was good faith when Simon Wessely defended the outcome switching in the PACE trial.

    Found it:

    https://www.youtube.com/watch?v=JWsFvmuJxMA


     
    MEMarge, EzzieD, Frankie and 4 others like this.
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  15. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
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    That is an abbreviated list of authors. There were also:E M McDonald, JF Mowbray, DJ Pearson, TEA Peto, VR Preedy, AP Smith, DG Smith, DJ Taylor, DAJ Tyrell, S Wessely, PD White.
     
    Hutan, ladycatlover, Nellie and 4 others like this.
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
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    Location:
    UK
    "at the time that they were given advice
    20:04
    with retrospect that was wrong advice
    20:07"

    According to the TMC minutes

    https://www.s4me.info/threads/canadian-consensus-criteria-not-suitable-pace-trial-minutes.8394/

    hmm.
     
    MEMarge, Dolphin, Sean and 1 other person like this.
  17. Trish

    Trish Moderator Staff Member

    Messages:
    51,890
    Location:
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    An article in The Times today by Sonya Chowdhury:
    https://www.thetimes.co.uk/article/long-covid-and-me-patients-deserve-a-better-approach-3vtbb32h7

    Long Covid and ME patients deserve a better approach


    The article goes on to describe the large numbers with Long Covid now being diagnosed with ME, ongoing problems with stigma, the need for better care, the merger of AfME with the ME Trust, and Decode ME.
     
    Hutan, oldtimer, cfsandmore and 14 others like this.
  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
  19. Andy

    Andy Committee Member

    Messages:
    21,814
    Location:
    Hampshire, UK
    Opinion piece: How Is M.E. Treatment Impacting Patients’ Right To Healthcare? by Sonya Chowdhury

    "Imagine knowing you’re ill and explaining your symptoms to the doctor, only to have them stop listening halfway through because they’ve already diagnosed you and everything you say will confirm their preconception: it is stress, you’re working too hard or something similar. The disabling physical symptoms of extreme fatigue, muscle aches, headaches, dizziness, and many others are dismissed. Or you’re just not trying hard enough to get better.

    Access to healthcare is a human right, and it’s one being denied to a large proportion of a quarter of a million children and adults living with M.E./CFS in the UK alone. It has a long history of being dismissed and trivialised, leading to patients being neglected by medical professionals, forgotten by researchers and ignored by the government."

    https://eachother.org.uk/how-is-m-e-treatment-impacting-patients-right-to-healthcare/
     
  20. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,534
    Location:
    Aotearoa New Zealand
    Credit to Sonya and her team, they are working on getting the message out.
     
    Ariel, Sean, Amw66 and 4 others like this.

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