Petition 2021: Myhill: Withdraw the 2007 NICE ME/CFS Guideline Now

[Peter T]

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

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.

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-general-medical-council-i-am-showing-my-support-for-dr-myhill-s-complaint-to-the-gmc-about-the-pace-authors/u/29549930?cs_tk=Ao831H5wSJSJAx_bOWEAAXicyyvNyQEABF8BvPIiHXL-SFKTtZo_ostp_d4=&utm_campaign=8d4aa16a39b543d5ab36a50e51ef1c60&utm_content=initial_v0_5_0&utm_medium=email&utm_source=petition_update&utm_term=cs

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]

 

[Ariel]

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

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.