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Petition: #MEAction: Publish the NICE ME/CFS Guideline Now

Discussion in 'Petitions' started by Andy, Aug 19, 2021.

  1. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Change.org are suggesting another petition that they think might be of interest, I would imagine that this is something they regularly do.

    I doubt it. The osteopathy petition is 9 months old. If you can find a reason why that petition has broken change.org's terms and conditions then it might be possible to appeal to them to remove it but I don't rate the chances of that happening.
     
  2. Sean

    Sean Moderator Staff Member

    Messages:
    7,044
    Location:
    Australia
    Every time I have signed a petition there they have suggested a bunch of other petitions to sign. Normal practice for them.
     
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    just shy of 18,100 now
     
  4. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
  5. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    Rate of signing has slowed down now 18,740. Would be great for it to get over 20k, 1250 more. I think it would be good if everyone who is able can send out another social media post. Especially on Facebook there’s no guarantee friends have seen this and it is definitely worth doing follow up posts. I got one of family who signed in response to my third post.

    Obviously if people with a lot of followers post it would really help but ones and twos still add up
     
    Invisible Woman, sebaaa, Jan and 13 others like this.
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
  7. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    Just had someone with ME who is FB friend sign this and share. There are still people out there to reach
     
  8. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    19,007

    I think it is going to take a while to go over 20k at this rate
     
  9. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,531
    Location:
    Aotearoa New Zealand
    The low numbers achieved on ME/CFS polls often surprises me. In my country there was a poll against the extension of the school year by two weeks this year, to offset Covid-lockdowns. It got over 20,000 votes in a day, I think, and that's in a very small country.

    I know it's comparatively difficult to explain the impact of a delay in a guideline, but when you think about the number of people with ME/CFS in the UK, and their networks of family and friends and ME/CFS organisations, and the global impact of the delay, with more people with ME/CFS and their family and friends potential signatories, and charities potential promoters, I'm surprised the number isn't bigger.
     
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,274
    Location:
    London, UK
    I am not surprised. The great majority of people's understanding of things like NICE guidelines will come from tabloid press or social media or nothing much. Considering the inability of the press to grasp the basics it would be quite surprising if the general public did.

    I strongly suspect that if you did a public poll about a NICE guideline that was different in that it recommended against some therapies most people would just think that was mean.

    And then there are all the PWME too ill to cope with the internet, the PWME whose family and friends don't really care, the people who are so pissed off with everything they don't want to think about anything that might be good or bad just because they have had enough...

    There are probably 100,000 people in the UK with ME in a meaningful sense. 20,000 seems to me not bad.
     
  11. Louie41

    Louie41 Senior Member (Voting Rights)

    Messages:
    1,308
    Location:
    upper Midwest US
    The inability to cope with social media in particular should not be underestimated.
     
    Invisible Woman, sebaaa, Jan and 12 others like this.
  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    I agree, and the petition afaik is available for anyone 'worldwide' to sign, so the current signatories are also not necessarily from the UK.
    (There was a recent feature on BBC radio2 about a petition to stop a mini train line being built on Holy island which got to 10,000 in a week and is still getting media coverage.)
     
    Last edited: Sep 1, 2021
  13. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,637
    Admins - did not know whether this warranted its own thread or not, so please feel free to alter or move as appropriate.

    Dr Myhilll has started a petition calling for the immediate withdrawal of the old 2007 NICE ME/CFS guidelines, see

    Call for NICE to WITHDRAW its CURRENT ME/CFS GUIDELINE – CG53
    https://www.change.org/p/the-national-institute-for-health-and-care-excellence-nice-call-for-nice-to-withdraw-its-current-me-cfs-guideline-cg53?utm_content=cl_sharecopy_30539566_en-GB:8&recruiter=1224171280&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition&utm_term=G>Search>SAP>UK>Brand>All-Match_Types

    In an up date (circulated today) to the previous petition put out in conjunction with Dr Myhill’s complaint to the GMC about the PACE authors it is said

    So it may be worth us considering whether supporting this new petition would be a constructive move forward or not. Though I would not object to serious discussion of whether PACE represents research misconduct or just bad science, will it be helpful to muddy the waters with NICE during the current delay?

    [Edited to add link to the update to the old petition relating to Dr Myhill’s GMC complaint]
     
    Last edited: Sep 2, 2021
  14. Ariel

    Ariel Senior Member (Voting Rights)

    Messages:
    1,055
    Location:
    UK
    I just put out another tweet about the change.org petition and emailed my family to sign. I don't know if the petition will achieve anything, but it seems better than nothing.

    I don't know about the Myhill petition. The 2007 guidelines should be withdrawn but she is the wrong messenger.
     
    Last edited: Sep 2, 2021
  15. Skycloud

    Skycloud Senior Member (Voting Rights)

    Messages:
    2,187
    Location:
    UK
  16. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    Fewer than 60 to hit 20,000 been ticking over last few days hopefully people will do fresh social media posts today and it will get over that milestone
     
  17. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,531
    Location:
    Aotearoa New Zealand
    Last edited: Sep 6, 2021
  18. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    Still 44 off 20k
    Eta now 19….
     
    Last edited: Sep 6, 2021
  19. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    Still 6 off 20k……………..
     
  20. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    Yes :balloons::party: 20,000
     

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