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.
3 thoughts on “MEAction UK’s response to the Guardian article 11 July 2023”
Well done. These challenges are very important to make. Thankyou on behalf of so many damaged by the previous NiCE guidelines
So glad you are keeping on top of this. I’m tired of reporters just swallowing the nonsense whole.
I emailed the Guardian criticising the article but received no reply. In my comments I emphasised the fact that most if not all the points made had been soundly rebutted many times already by leading specialists in ME,and by 100% of Patient Support Groups in the UK. NICE 2021 has also been wholeheartedly accepted by the UK APPG ( all party parliamentary group group) on ME in their excellent booklet “Rethinking ME”. ( May 2022).
‘Doctors with M.E.’ a global organisation of clinicians in the fields also produced a pamphlet summarising NICE 2021 and supporting its recommendations. The auspicious Mayo Clinic ( Lucinda Bateman MD) in its booklet ‘Consensus Recommendations’ (November 2021) also demolishes PACE and its feeble attempt to validate GET and CBT.
I pointed out the deep hurt felt by the ME community at this article’s publication,and opined that it was unworthy of such a reputable newspaper.
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