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

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.

 

just shy of 18,100 now

 

Now at 18, 336, https://www.change.org/p/the-nation...ellence-publish-the-nice-me-cfs-guideline-now

 

https://twitter.com/user/status/1429827988649021440

 

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.

 

The inability to cope with social media in particular should not be underestimated.

 

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.)

 

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]

 

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.

 

19,678