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United Kingdom: Action for ME (AfME) news

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

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Page 12 of 13
  1. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    15,327
    Location:
    UK West Midlands
    I closed my Xitter account a few months ago. I can understand why people are objecting I’m just an individual not an organisation so a lot simpler choice. In practice I would have given probably 3 months notice and got on Bluesky before making the announcement but I don’t disagree in principle with what they’re doing.

    I presume that as I was many Xitter followers were also following on Facebook and or other platforms.
     
    NelliePledge, Nov 15, 2024
    #221
    MEMarge, Hutan, Yann04 and 7 others like this.
  2. Trish

    Trish Moderator Staff Member

    Messages:
    56,466
    Location:
    UK
    I haven't followed what sort of interactions on Twitter they say have been spreading misinformation about them and creating a lot of work, so I can't comment on that. Surely those people if they want to continue to be vocally critical of AfME will simply follow AfME to Bluesky or TikTok anyway.

    I support AfME on wanting to leave Twitter on ethical grounds.

    I do think there is a problem with lots of ME organisations not listening to experienced pwME enough. I suspect they gather to their membership people relatively new to ME/CFS and the more uncritical people, as I was for many years. I was just glad to have organisations like the MEA that produced good materials. I've never joined AfME as I thought their materials were not good back then.

    I would like ME organisations to join this forum and discuss with our members too. I think our more critical and scientific approach has a lot to offer.
     
    Trish, Nov 18, 2024
    #222
    Hutan, JohnTheJack, Yann04 and 13 others like this.
  3. Kitty

    Kitty Senior Member (Voting Rights)

    Messages:
    7,291
    Location:
    UK
    It baffles me that there isn't more interaction.

    We can be a tough crowd, but unlike some people on Xitter, we take responsibility for what we write. We don't just post provocative comments and then vanish, or try to organise pile-ons.

    Anyway, holding organisations to account makes them better at what they do, even if it can be challenging at the time.
     
    Kitty, Nov 18, 2024
    #223
    Hutan, Yann04, Turtle and 11 others like this.
  4. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,667
    Agreed, and sadly both MEA and AfME, and of course (AYME...subsumed by AfME), have a shakey track record and history some two decades ago,
    Chris C, Val H, MJW.........

    CC AfME misguided steer legacy and consorting with the devils in 2004 and 2005 is still being unpicked today.

    And STILL the 'FOM' Report published prior to NICE, is still on the Web AND is being accessed and referenced by Foundation Trusts Occupational Health Departments like mine .....
    Can S4ME assist with getting it removed please?
    It's dangerous left with our new Government's drive to rehabilitate back into work......
     

    Attached Files:

    Suffolkres, Nov 20, 2024
    #224
    Kitty, bobbler, Lou B Lou and 3 others like this.
  5. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,667
    Dr Mada instrumental in publishing above reports in 2006.
    https://www.rcpi.ie/News/former-med...ulty-of-occupational-medicines-smiley-lecture
     
    Suffolkres, Nov 20, 2024
    #225
    Kitty, bobbler, Yann04 and 3 others like this.
  6. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,667
    Suffolkres, Nov 20, 2024
    #226
    Kitty, bobbler, Yann04 and 3 others like this.
  7. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,667
    As AfME were instrumental in this publication, AfME should concede that the review date is now a tad overdue, 2011...!

    So, this report previously endorsed and involving AfME, is contrary to and in defiance of the reviewed NICE Guidelines of 2021...
    It is dangerous.

    Both AfME MEA and any future APPG should deal with it.
     
    Suffolkres, Nov 20, 2024
    #227
    Hutan, Kitty, bobbler and 6 others like this.
  8. Trish

    Trish Moderator Staff Member

    Messages:
    56,466
    Location:
    UK
    S4ME is its members. We don't have staff who can take on things like this. If you or anyone want to work on it by all means do.
     
    Trish, Nov 20, 2024
    #228
    Hutan, Kitty, Sean and 6 others like this.
  9. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,667
    I understand...
    I have tried for 19 years...
    to get Forward ME and former APPG to take some actions ....
    Ironically, all those years ago 2005,.....
    it was only MEA and Neil Ridley and Tom Kindlon who saw the potential for real damage.
    Everyone else was focused on Emerging 2007 NICE.
     
    Suffolkres, Nov 20, 2024
    #229
    Hutan, Kitty, Lou B Lou and 6 others like this.
  10. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,667
    Trish, bearing in mind the thread where Alan Carson has popped up, ....- rebuttal of NICE 2021,-
    Clinical effectiveness of an online group physical & mental health rehab programme for post-covid-19 condition REGAIN study, 2024, McGregor+
    I might ask David T to have a look at this legacy issue of FOM, NHS Health at Work. Madan, White, Sharpe AfME et all ?
     
    Suffolkres, Nov 21, 2024
    #230
    bobbler, Kitty, Peter Trewhitt and 2 others like this.
  11. Yann04

    Yann04 Senior Member (Voting Rights)

    Messages:
    1,210
    Location:
    Switzerland (Romandie)
    I’m not sure this is who they are referring too. But the Long COVID Action Project people, who are big on twitter, (Believe Long COVID is a persistent HIV type infection, and that ME has nothing to do with it, some of them believe ME is made up and “stealing the thunder” fron Long COVID)

    Anyways, I’ve seen them create campaigns and pile ons against what they call “Legacy ME organisations”, Solve ME, Action for ME etc.
     
    Yann04, Nov 21, 2024
    #231
    Missense, Hutan, bobbler and 6 others like this.
  12. Trish

    Trish Moderator Staff Member

    Messages:
    56,466
    Location:
    UK
    LCAP are already on Bluesky:
    https://bsky.app/profile/lcap.bsky.social
    My point was that leaving Twitter doesn't mean the attacks from such groups will stop. Though on Bluesky you have more power to block. I would think if the start the same attacks on Bluesky a lot of people will block them.
     
    Trish, Nov 21, 2024
    #232
    Hutan, Sean, Kitty and 4 others like this.
  13. Yann04

    Yann04 Senior Member (Voting Rights)

    Messages:
    1,210
    Location:
    Switzerland (Romandie)
    Yeah. It was never their official account, but some of their loudest voices who organised the attacks.

    Anyhow, I’m pretty sure the death threats some of their supporters made would get them swiftly kicked off bluesky, which is a plus to twitter.
     
    Yann04, Nov 21, 2024
    #233
    Sean, Kitty, Peter Trewhitt and 2 others like this.
  14. Nightsong

    Nightsong Senior Member (Voting Rights)

    Messages:
    809
    SequenceME: first of a kind genetic study
    December 16, 2024

    A groundbreaking partnership has launched today.

    The partners are working together to secure funding for a study which will analyse the entire genetic code of up to 17,000 people with Myalgic Encephalomyelitis (ME) in a bid to uncover the genetic causes of the illness.

    SequenceME will bring together experts from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME, to uncover the root causes of ME and to determine whether ME is one illness, or an umbrella condition encapsulating multiple diseases, such as long Covid and other chronic conditions.

    (continued at) https://www.actionforme.org.uk/news/sequenceme/

    Created a thread for this.
     
    Last edited: Dec 16, 2024
    Nightsong, Dec 16, 2024
    #234
    MEMarge, Sean, SNT Gatchaman and 13 others like this.
  15. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    4,422
    Location:
    UK
    I really hope this gets funding asap.
     
    Sasha, Dec 16, 2024
    #235
    Sean, Hutan, Dolphin and 5 others like this.
  16. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Location:
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    Does anyone know anything about getting this funded — a proposal in the works, for example?
     
    InitialConditions, Dec 16, 2024
    #236
    Sean, Hutan, Kitty and 4 others like this.
  17. John Mac

    John Mac Senior Member (Voting Rights)

    Messages:
    1,018
    Anybody have any idea how much a study of this size sequencing the whole genome of 17,000 people would cost?
     
    John Mac, Dec 16, 2024
    #237
    Sean, Kitty, Peter Trewhitt and 2 others like this.
  18. Binkie4

    Binkie4 Senior Member (Voting Rights)

    Messages:
    2,655
    How long will this take?
     
    Binkie4, Dec 16, 2024
    #238
    Sean, Kitty, Jacob Richter and 1 other person like this.
  19. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    4,422
    Location:
    UK
    There's a separate thread on SequenceME here with some of this info.
     
    Sasha, Dec 16, 2024
    #239
    Sean, Hutan, Kitty and 3 others like this.
  20. Binkie4

    Binkie4 Senior Member (Voting Rights)

    Messages:
    2,655
    The info on the SequenceME thread. " The next phase, involving sequencing of 10,000 participants, requires £7 million in funding" .
     
    Binkie4, Dec 16, 2024
    #240
    Sean, Dolphin, Kitty and 4 others like this.
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