18 August 2021 - new NICE Clinical Guideline on ME/CFS expected publication date.
On 31 March, ME Research UK (MERUK), along with other national ME charities, announced -
On 29th March 2021 stakeholders received the following e-mail from NICE’s Senior Guideline Co-ordinator.
Dear Stakeholder, Because of the large number of comments received during consultation on the ME/CFS guideline, and the additional work needed to respond to them fully, the publication date has changed. The guideline will now publish on 18th August 2021.
(MERUK) explained -
The review of the 2007 clinical guideline “Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management” (CG53) has been beset with delays - some being attributed to staff redeployment due to COVID and others to the volume of evidence submitted and the workload involved in evaluating and formulating a document which will have a direct impact on many patients. A further delay is regrettable as the current guideline, with its faults, remains in place and continues to influence NHS policies throughout the UK.
The finalised, updated guideline is awaited eagerly not only to allow it to come into force but also to allow stakeholders to gauge any changes which may have arisen from the comments received during the draft consultation stage which ended on 22 December 2020. Of particular interest will be whether the rejection of GET and CBT as ‘treatments’ for ME/CFS remains unaltered.
It was in September 2017 that NICE announced “After considering all the evidence and views of topic experts, we decided that a full update with modified scope is necessary for this guideline.”
In December 2019 it was announced that the publication date would be delayed from 14th October 2020 to 9th December 2020 to ensure that the committee would have sufficient time to consider both the findings from a call for evidence, and from two additional pieces of group work centering on children and young people with ME/CFS, and people with severe ME/CFS.
By 10th November 2020 a draft guideline was produced entitled “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management” and a finalised publication date of 21st April 2021 mooted. It is hoped that 18th August 2021 brings this four year saga to an end.
Further reactions -
The ME Association (MEA) stated -
NICE announce new publication date for the ME/CFS clinical guideline, and included an updated downloadable leaflet summarising the main changes proposed in the new clinical guideline for ME/CFS.
The ME Association was expecting NICE (The National Institute for Health and Care Excellence) to push back the publication date for the new ME/CFS clinical guideline.
- Visit the NICE guideline for ME/CFS website to learn more
- Download the free MEA leaflet that summarises the proposed changes in the new clinical guideline
Action for ME (AfME) announced -
NICE guideline delayed until August 2021 March 30, 2021
The National Institute for Health and Care Excellence (NICE) emailed stakeholders yesterday to let us know there will be a delay in the publication of its new guideline for diagnosing and managing M.E./CFS: "Because of the large number of comments received during consultation on the M.E./CFS guideline, and the additional work needed to respond to them fully, the publication date has changed. The guideline will now publish on 18th August 2021."
AfME explained -
This follows a consultation on the draft guideline at the end of last year, with a significant number of responses from registered stakeholders. The people with M.E. and clinicians who make up the guideline committee that review these responses do so on a voluntary basis, and it's important they have the necessary time to do this. We are disappointed though that NICE was not able to build in this time from the beginning, and are concerned about the impact this further delay will have on people being supported by doctors using the 2007 guideline.
The draft of the new guideline makes it clear that people with M.E. should not be offered "any therapy based on physical activity or exercise as a treatment or cure for ME/CFS [or] any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy."
See our previous blogs for more information on the development of the new NICE (The National Institute for Health and Care Excellence) Clinical Guideline on ME/CFS.
Take care, and stay safe everyone.