Publish That Guideline

Multiple international Long COVID patient-led organisations stand in solidarity with ME/CFS organisations and individuals in an open letter sent to NICE chief executive Professor Gillian Leng, NICE director of the centre for guidelines Dr Chrisp, and roundtable chair Professor Dame Carol Black, urging them to publish the NICE ME/CFS guideline without further delay. Long COVID Physio is proud to stand in solidarity as signatory of this open letter hosted on our website.

Over the last 3 years, informed by an extensive review of scientific evidence, the National Institute for Health and Care Excellence (NICE) used its usual rigorous methodology to produce a new, more evidence-based guideline for ME/CFS, with the draft guideline made public 10th November 2020. However in an unprecedented deviation from due process, on 17th August 2021 just a few hours before scheduled release of the final guideline, NICE paused publication indefinitely following objections from three Medical Royal Colleges. A roundtable was proposed, due to take place on 18th October 2021 with the agenda and discussion points made public.

ME/CFS organisations and individuals have called for NICE to #PublishThatGuideline. The guideline had been updated suggesting graded exercise therapy (GET) can be harmful for people living with ME/CFS experiencing post-exertional symptom exacerbation, and cognitive behavioural therapy (CBT) is not itself an effective treatment for ME/CFS. Letters supported by organisations, petitions with over 21,000 signatories, Doctors with ME Public Letter to RCPCH, and campaign videos have urged NICE to publish the guideline without delay, because the detrimental pause is putting patients at risk. There has been six written questions in the House of Commons on this topic, and oral questions in the House of Lords on 12th October 2021. Judicial review proceedings commenced against NICE have currently been deferred. The letter of claim sent to NICE on 1st October was made public with the claimants identity redacted. ME Action have provided a full report from the roundtable held on 18th October 2021.

The updated guidelines were published on 29th October 2021.

Date Last Revised: 29th October 2021