The ME Association and NICE robustly defend the clinical recommendations for managing ME/CFS

The ME Association has strongly challenged claims made by a group of doctors and researchers whose views were expressed in a Guardian article yesterday. It followed a research review they had written supporting the use of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) and openly criticising the recommendations made in the 2021 NICE Guideline on ME/CFS.

The National Institute for Health and Care Excellence (NICE) has also rejected these claims and robustly defended its recommendations – which removed GET and downgraded CBT after a thorough review of the available evidence. The ME Association and NICE will be making a more detailed response to the research in due course. Dr Shepherd has written to the Guardian and his comments (below) have been picked up by other news media.

The Guardian: ‘ME/CFS guidance that discourages exercise is flawed, say researchers'

Study criticises research method behind latest NICE advice for treating chronic fatigue syndrome


New guidance discouraging doctors from recommending exercise and cognitive behavioural therapy for people with chronic fatigue syndrome (CFS) patients is not evidence-based, according to researchers.

A study questions the National Institute for Health and Care Excellence (NICE) review process for this guideline for clinicians dealing with CFS, also called myalgic encephalomyelitis (ME), and its use of scientific standards in considering the evidence.

One of the study’s lead authors, Prof Trudie Chalder from the psychiatry department at King’s College London, said: “The decision to change the guideline has had a direct effect on doctors’ and therapists’ ability to treat patients. Services are no longer able to provide a full range of evidence-based therapeutic interventions.

In 2021 NICE reviewed the scientific evidence, concluding that the benefits from CBT and GET were low, that GET was unsafe, and CBT should only be used to manage symptoms and distress, not to aid recovery. Chalder said the research evidence base for both therapies had “strengthened, not weakened” since the 2007 guideline…

The Guardian article carried a robust defence from NICE.

National Institute for Health and Care Excellence

“We reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that NICE has not followed international standards for guideline development which has led to guidance that could harm rather than help patients.

“In developing our guideline, as well as bringing together the best available scientific evidence, we also listened to the real, lived experience and testimony of people with ME/CFS to produce a balanced guideline which has their wellbeing at its heart.

“We will provide a detailed response to this analysis and in the meantime, we are confident that system partners and the ME/CFS community will continue to work together to make sure the important recommendations in our guideline are implemented.”

A NICE spokesperson

ME Association Comment

“It is disappointing but not surprising to find that these doctors and researchers – many of whom have devoted a large part of their professional life to trying to persuade their colleagues that ME/CFS is caused by abnormal illness beliefs and behaviours and can be successfully treated by CBT and graded exercise therapy (GET) – are still refusing to accept the recommendations in the new NICE guideline on ME/CFS.

“The NICE guideline committee (of which I was a member) spent an enormous amount of time over three years reviewing all the evidence on CBT and GET from both clinical trials and from people with ME/CFS. They concluded that the clinical trial evidence for the use of CBT and GET was of very poor quality and that people with ME/CFS consistently reported that CBT was ineffective and that GET made their condition worse.

“We are therefore pleased to see that NICE is robustly defending the recommendations regarding CBT and the removal of GET in the new guideline and the way in which these conclusions were reached.

“These recommendations have been widely welcomed by the ME/CFS patient community, and by most health professionals who are actively involved in managing people with ME/ CFS in both primary and secondary care here in the UK and overseas.”

Additional coverage

Dr Charles Shepherd,
Trustee and
Hon. Medical Adviser
to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.

Dr Charles Shepherd
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