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NHS video Pilates for CFS (not a recommendation)

Discussion in 'General ME/CFS news' started by arewenearlythereyet, Oct 4, 2018.

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  1. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Well that’s convenient isn’t it? I wonder what the clinicians will say?

    Keep us posted and then I guess if it’s a bland response mire of us can write in?
     
    arewenearlythereyet, Oct 17, 2018
    #21
    adambeyoncelowe, Simbindi, andypants and 3 others like this.
  2. Hutan

    Hutan Moderator Staff Member

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    I got another reply from the NHS today, I'm not quite sure why, perhaps this is the result after consultation with the in-house clinician. Anyway, I'd count this as a 'bland response' that could mean anything at all.

    Dear XXX,
    We value all feedback from the public and thank you for taking the time to send yours.

    We regularly review our content and will ensure that your feedback is taken into account when reviewing this video.

    We may remake or reshape video content based on user feedback so your message will be instrumental to how we approach reviewing this video.

    Thanks again,
    NHS.UK​

    More letters from others suggesting the video be withdrawn until it's remade wouldn't hurt I think.
     
    Hutan, Oct 25, 2018
    #22
    adambeyoncelowe, Simbindi, Inara and 5 others like this.
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    this video is still there for CFS patients; it was supposed to have been reviewed in Aug 2021.
     
    Sly Saint, Nov 21, 2021
    #23
    adambeyoncelowe, MSEsperanza, Hutan and 1 other person like this.
  4. Hutan

    Hutan Moderator Staff Member

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    I've submitted a complaint using the website's facility, noting the requirements set out in the NICE ME/CFS Guideline about any recommendations of exercise for people with ME/CFS.
     
    Hutan, Nov 21, 2021
    #24
    FMMM1, adambeyoncelowe, MSEsperanza and 10 others like this.
  5. Hutan

    Hutan Moderator Staff Member

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    A win!! A tiny tiny win, but still. It's due to the NICE Guidelines @adambeyoncelowe @Keela Too @saranbonser

    In the 'accept this solution' email, I have suggested that the NHS work with Physios for ME if they want to create content about exercise for people with ME/CFS. @PhysiosforME
     
    Hutan, Dec 16, 2021
    #25
    cfsandmore, Grigor, J.G and 21 others like this.
  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Absolutely. If 'Instructor Live' have no idea about providing evidence-based advice they should not be used.

    And its doesn't have an apostrophe.

    At least the video is down.
     
    Jonathan Edwards, Dec 16, 2021
    #26
    FMMM1, adambeyoncelowe, MSEsperanza and 7 others like this.
  7. Hutan

    Hutan Moderator Staff Member

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    :rofl:
    Not only are the NHS website multimedia team giving unevidenced and harmful advice about medical conditions, they are bad at grammar. I wonder if the same person wrote the reply I received back in 2018:

     
    Hutan, Dec 17, 2021
    #27
    Arnie Pye and Trish like this.
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sly Saint, Dec 18, 2021
    #28
    MEMarge likes this.
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