MEAction UK is preparing a detailed response to the latest published paper attacking the NICE Guideline on ME/CFS. In the meantime this is the response sent to The Guardian in reply to their article covering the publication.

MEAction UK was shocked to read the article ‘ME/CFS guidance that discourages exercise is flawed, say researchers’ published on 11th July 2023.The article covers an attack on the 2021 NICE guideline for ME/CFS by a group of researchers who have focussed on treating ME with their pet therapies. By contrast, the patient community welcomes the NICE guideline and the robust evidence review. The guideline is a real improvement on the previous version and the removal of Graded Exercise Therapy as a recommended treatment was greeted with relief.

In the article Rachel Hall quoted claims that NICE “invented” a new definition of ME.These claims are unfounded as NICE used the Institute of Medicine criteria which is now 8 years old. It was created using a more robust process than many other definitions as it drew on samples from different countries and compared the most widely used definitions of ME. Most other definitions are authored by a small group of individuals representing a narrow set of specialisms. Prof Chalder is quoted as saying: ‘The decision to change the guideline has had a direct effect …Services are no longer able to provide a full range of evidence-based therapeutic interventions.”

Sadly for people with ME, services have never offered suitable treatment and have often harmed patients by pursuing strategies with a low evidence base. This was illustrated in the MEAction UK 2019 report, ‘ME services in the UK Not Fit For Purpose’.

The attitude of the authors of the study is illustrated by their refusal to accept that the illness is now called ME/CFS by NICE and that ME is preferred by patients. Using the term CFS/ME throughout appears to be a calculated insult to a community that has long suffered neglect and stigmatisation by the medical hierarchy.