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

Binkie4 said:
What is going on?
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Change.org are suggesting another petition that they think might be of interest, I would imagine that this is something they regularly do.

Binkie4 said:
Could someone get this taken down?
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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.
 
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
 
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.
 
Hutan said:
The low numbers achieved on ME/CFS polls often surprises me.
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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.
 
Hutan said:
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.
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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.)
 
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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

Call for NICE to WITHDRAW its CURRENT ME/CFS GUIDELINE – CG53 - https://www.nice.org.uk/guidance/cg53

In its recent review of the above guideline, NICE collated evidence from many sources – see https://www.nice.org.uk/guidance/gid-ng10091/documents/evidence-review-7

In a total of nineteen tables, NICE looked at 172 CBT outcomes derived from the various studies and graded the evidence for 153 (89%) as “VERY LOW” quality and for the remaining 19 (11%) as “LOW” on quality. Not a single study was found to have yielded evidence that was any better than “LOW’’ quality.

With respect to graded exercise therapy (GET), of a total of 64 outcomes in studies of GET, NICE graded 52 (81%) as “VERY LOW” quality and 12 (19%) as “LOW” quality. Again, not a single study produced evidence any better than “LOW” quality.

Credit - https://www.thefacultylounge.org/20...ate-the-cbtget-school-of-mecfs-treatment.html

In her complaint to the GMC about the “PACE authors”

https://www.drmyhill.co.uk/wiki/My_Complaint_to_the_GMC_about_the_PACE_authors

Dr Myhill submitted evidence showing the harm done to ME/CFS sufferers by the administration of CBT and GET. More than 200 letters were sent to the GMC detailing such harm, and over 10,000 sufferers added their lived experiences of harm to an online petition - https://www.change.org/p/the-genera...s-complaint-to-the-gmc-about-the-pace-authors

Further details of the harm caused to ME/CFS sufferers by CBT and GET were submitted to NICE as part of their review process of CG53. See https://www.nice.org.uk/guidance/cg...er-consultation-comments-table-pdf-4602203536

In view of the evidence that
· the use of CBT or GET for ME/CFS is not supported by the scientific literature
· the use of CBT or GET for ME/CFS patients results in harm

and notwithstanding the delays in publishing the new NICE guideline on ME/CFS, action must be taken forthwith regarding the current guidance, CG53.

We, the undersigned,

---require that NICE withdraws CG53 immediately
---affirm that having no NICE guidance in place for ME/CFS is better than having the current guidance CG53

Petition submitted by Dr Myhill.
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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

Once we have CBT and GET removed as ‘treatments’ for ME/CFS, we can fully re-open the GMC case against the PACE authors. In fact, we have it on good authority that the pushback against the new NICE guideline has been so ‘strong’ because it is accepted that, once adopted, this will strengthen Dr Myhill’s complaint to the GMC about the PACE authors. See https://www.change.org/p/the-genera...=email&utm_source=petition_update&utm_term=cs
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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]
 
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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.
 
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