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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. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    4913 still ticking over
     
    Hutan, JohnM, MeSci and 2 others like this.
  2. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    4997

    Now 5004
     
    Last edited: Apr 11, 2018
    Sly Saint, Hutan, dangermouse and 2 others like this.
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  4. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Now 5180 another push is on to get more shares and signatures
     
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    5287 keep it going
     
    Hutan, MeSci, Binkie4 and 1 other person like this.
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    5398 ta muchly everyone
     
    Andy, Hutan, NelliePledge and 5 others like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    5489 jogging along
     
    Andy, Hutan, andypants and 7 others like this.
  8. Andy

    Andy Committee Member & Outreach

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    5494

    And also shared on our Facebook page again
     
  9. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Why is this one getting so few compared to the MEA's petition? Petition fatigue? Or is it just not worded as well?
     
  10. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I would say that there’s a segment of the people with ME who have gone through the CFS clinics who believe that they have been helped somewhat by CBT and aren’t aware of the false illness belief ideology behind it. There are a lot more people who see the issue with GET. Could be argued that including CBT reduces the chances of broadest possibile support. However there is no point campaigning for removing PACE GET without PACE CBT as long as the CBT remains it is a Trojan horse for promotion of increasing activity and ignoring symptoms. I don’t know what Robin Browns plans are around presenting this to NICE I think it would be helpful to have a focus. Isn’t there a proposal terms of reference for the committee coming out soon which will then be consulted on for ? a few weeks. So NICE will be back on peoples radar and a good opportunity to highlight the petition.

    Also I may be wrong but don’t think @JenB has shared on social media yet. Needs to be engagement with as many people with large social media followers as possible. This petition is done by a new group of advocates they have the music album coming out for 12 May as well anyone wanting and able to help with advocacy should contact them as they are keen to get help.
     
    Last edited: Apr 17, 2018
    alktipping, Hutan, MEMarge and 2 others like this.
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I think that also the fact the last one was set up by the MEA and this one by an unknown individual also has made a difference. Plus I imagine that also the other one might have seemed more urgent and caused more outrage/sympathy among non-ME sufferers.
    Who knows. I wish there were a more co-ordinated way to get things like this out to 'the masses' of pwME and supporters across the world.
     
  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    5588 (no snail or tortoise emoji)
     
    MEMarge, Allele, andypants and 2 others like this.
  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    5610.........this is getting to be a bit like pulling teeth
     
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    5804 sudden spurt over the last couple of days
     
  15. Andy

    Andy Committee Member & Outreach

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    5841 signed.
     
  16. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    it is ticking over again just over 100 short of 6000.
     
  17. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    If people are asking their MP to sign the Early Day Motion, could they add this too?
     
  18. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I would say yes - the more it is shared the better the total will be
     
  19. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    15 short of 6000 S4ME social media share along with that vlog seems to have added some more supporters. The group seem to be focusing efforts on the music website launch at the moment
     
  20. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Finally broke 6k 6006
     
    andypants, MEMarge, Andy and 6 others like this.

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