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Petition: Remove CBT/GET from NICE guidelines NOW (ALL COUNTRIES can sign)

Discussion in 'Petitions' started by Sly Saint, Feb 23, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    6125 .....
     
    Andy, JohnM, MeSci and 2 others like this.
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    6202.......
     
    Last edited: May 24, 2018
  3. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I have been in touch with Ben at ME Action they have this petition on their radar and obviously it is the ME Action U.K. people who take the lead on what U.K. stuff to promote when. Current focus is on EDM but hopefully the petition will get a nudge at some point. To be fair it would help if the petition had a timeline to help focus some attention on it but we don’t really know what the plans are for it. I think the small group involved are still focused on the music website.
     
  4. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Meanwhile I’m trying to identify a few people with ME like sleepy comedian on twitter and Facebook who have a lot of followers to ask them to share.
     
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    6448.... crawling along (bit like me at the moment)
     
    Inara, Invisible Woman, Andy and 6 others like this.
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    They've changed the photo on the petition; this is the new one
    upload_2018-6-26_10-49-55.jpeg

    hmmm; I don't like this one or the message either
     
    Barry, Lisa108, Inara and 4 others like this.
  7. TiredSam

    TiredSam Moderator Staff Member

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    Why not?
     
  8. MeSci

    MeSci Senior Member (Voting Rights)

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    I don't think she looks typical of an ME sufferer.
     
  9. Hutan

    Hutan Moderator Staff Member

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    I doubt that there is a typical ME sufferer - but if there was, she would be female and middle-aged. And around 75% of people who are middle-aged have a BMI that is higher than the 'healthy range'. So I think this person looks as typical as any.

    I expect that regardless of what photo those words 'Exercise would kill me' are put over, it would create a negative reaction in many people. The words come across as whiny, drama-queen-ish and lazy unless there is a whole lot more explanation.

    I think ME is a very hard story to sell.
     
    Barry, Binkie4, Graham and 9 others like this.
  10. Trish

    Trish Moderator Staff Member

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    Rather than a photo of an individual, I think it might be better to have a montage of photos of people in bed, using wheelchairs etc. And the slogan 'Exercise would kill me', while it may be true, overdramatises the lived experience of most patients, I think. I prefer something like 'Exertion makes me sicker'.
     
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  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I'd just put something like this on it:
    upload_2018-6-26_16-42-6.jpeg
    or this
    upload_2018-6-26_16-45-12.jpeg
     
    Amw66, Inara, JohnM and 1 other person like this.
  12. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    which is what?
     
  13. MeSci

    MeSci Senior Member (Voting Rights)

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    Well, she doesn't look anything like any photos I've previously seen (e.g. here), or anything like any of the few sufferers I've met, or me! I mean, she could be a sufferer, but not like many others. Or maybe we tend to only post positive-looking photos?

    It's just that posting a photo that doesn't look like most of us may make it harder for people to believe that we are sufferers?

    Hope I'm making sense.
     
  14. Trish

    Trish Moderator Staff Member

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    We come in all ages, shapes and sizes. She does look ill to me, which is better than the commonly used young glamorous person looking a bit tired and sitting at a desk.

    She is probably just as representative as any of us are. However, it's possible it would be better to use a younger looking person, to emphasise it's an illness that tends to strike us down when we are young or middle aged.

    But even if we start young or middle aged, we get older! I wouldn't want to use a photo of myself now (aged 68) to publicise ME, because the viewer might just see 'old person' rather than 'sick person'.
     
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  15. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    she doesnt look that different to me - if ME affects people of all ages we should show pictures of people of all ages
     
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    this is still ticking along
    now just a few shy of 7500
     
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  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    bumping this in case there are members who haven't signed yet
     
    Binkie4, MEMarge, MeSci and 1 other person like this.
  18. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I support this but it seems to me that if you have a petition it needs to have a focus and a timeline. The ME Association petition was effective because it got 13000 signatures in a short time period.

    This has been creeping along for months and months so while we know getting 10000 worldwide signatures is pretty good for grassroots ME advocacy it likely isn’t going to have much of an impact with NICE.
     
    Binkie4, MEMarge and Invisible Woman like this.
  19. Barry

    Barry Senior Member (Voting Rights)

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    I think non-ME-aware people need help to understand the basics, and something along the following lines might be educational:

    ME damages the body's ability to exercise
    Over-exertion makes it even worse
    We would love to exercise more
    A cure for ME would mean we can
     
  20. Diluted-biscuit

    Diluted-biscuit Senior Member (Voting Rights)

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    The font doesn’t help either I don’t think.
     

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