Updated NICE Guideline on ME/CFS Delayed

On 29th March 2021 stakeholders received the following e-mail from NICE’s Senior Guideline Co-ordinator

NICE - National Institute for Health and Care Excellence
Level 1A, City Tower
Piccadilly Plaza
M1 4BT

Tel: 0300 323 0140
Fax: 0845 003 7784 
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. 

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 subitted 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 guidline, 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.

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