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Hidden disease in the spot light in York: more about Myalgic Encephalomyelitis (M.E.)

Discussion in 'General ME/CFS News' started by Sly Saint, Mar 17, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "M.E awareness: Liberal Democrats look to kick-start campaign on the hidden disease

    In a motion to Council on the 22nd March, Liberal Democrat Councillors are looking to kick-start a campaign to raise awareness on the often overlooked and hidden disease; Myalgic Encephalomyelitis, otherwise known as M.E.

    upload_2018-3-17_13-2-17.jpeg

    "M.E remains largely out of the public conscience and therefore, is often referred to as a ‘hidden’ disease. In response, the York Liberal Democrats are calling on the Council to initiate a public awareness campaign in the build up to M.E Awareness Day on the 12th May."

    full article here:

    https://stevegalloway.mycouncillor....ork-more-about-myalgic-encephalomyelitis-m-e/
     
    ladycatlover, Barry, Andy and 6 others like this.
  2. Sasha

    Sasha Senior Member (Voting Rights)

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    Just posted (held in moderation):

    It's great that people are trying to raise awareness of ME but worrying to see the old idea repeated that 'studies suggest that cognitive behaviour therapy and exercise are the most effective treatments'. These studies have been discredited (see for example, Carol Monaghan MP's recent speech in Westminster explaining the problems and referring to the biggest of these studies as a 'scandal'. Surveys indicate that more than 50% of ME patients trying graded exercise get worse - some end up bedbound who weren't before.Patients desperately need biomedical research and proper, science-based treatments.​
     
  3. Trish

    Trish Moderator Staff Member

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    Here's my comment also awaiting moderation.

     
    ladycatlover, Solstice, brf and 15 others like this.
  4. Starlight

    Starlight Established Member (Voting Rights)

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    I think this kind of awareness is the very last thing we need. It' s the only kind we have had on this side of the Atlantic,and it has been disastrous. If the Lib. Dems.want to raise awareness they should do a bit of research and maybe work on bringing the truth into the public domain. That would be worthwhile. I can no longer tolerate sloppy nonsense about CBT and GET. They may mean well but more awareness about the "effective treatments" would be worse than nothing. It has caused decades of devastation for so many.
     
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    The York ME Community are normally on top of these things so here is their contact email if anyone would like to get in touch with them.
    bill@york-me-community.org
     
    ladycatlover, Solstice, Barry and 9 others like this.
  6. TiredSam

    TiredSam Moderator Staff Member

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    Didn't Vince Cable attend the parliamentary showing of Unrest, and tweet sympathetically about it afterwards? Maybe he should have a chat with Steve Galloway and put him straight on "CBT and exercise".
     
    ladycatlover, Barry and Starlight like this.
  7. Starlight

    Starlight Established Member (Voting Rights)

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    Thanks for posting their email address and for this thread. I will contact them and maybe others would also.Hopefully LIb Dems will be open to suggestions.
     
  8. NelliePledge

    NelliePledge Moderator Staff Member

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    Surprised by this Bill posts on IIME Facebook I’d guess it’s probably another case of politicians getting things garbled.
     
    ladycatlover and Barry like this.

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