Health guidance which discouraged exercise among most people with chronic fatigue syndrome is flawed and could mean that patients are missing out on “helpful treatments”, academics have suggested.
Researchers say they have identified several shortcomings in guidance for the NHS, set out by the National Institute for Health and Care Excellence (Nice).
The guideline, published in 2021, said that graded exercise therapy should no longer be recommended for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The NHS describes CFS or ME as a long-term illness with a wide range of symptoms, the most common of which is extreme tiredness.
The consequences of this are that patients may be denied helpful treatments and, therefore, risk persistent ill health and disability— Report's authors
It can affect anyone, including children, but is more common in women, and tends to develop when people are aged between their mid-20s and mid-40s.
Until the new guideline was published, treatments included cognitive behavioural therapy (CBT), graded exercise therapy and medication to control pain, nausea and sleeping problems.
The latest guideline says ME/CFS is a complex condition where there is no “one size fits all” approach to managing symptoms, and says any therapy will depend on the patient’s preferences and should not represent a fixed increase in activity.
And Nice concluded that CBT should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness.
Now 51 international specialists have “systematically critiqued” the document, identifying a number of issues with the review process and the “interpretation of the evidence”.
The authors suggested that the “dissonance between this and the previous guideline was the result of deviating from usual scientific standards of the Nice process”.
They added: “The consequences of this are that patients may be denied helpful treatments and, therefore, risk persistent ill health and disability.”
They said that the Nice committee “created a new definition of CFS/ME, which ‘downgraded’ the certainty of trial evidence” and that the committee “discounted trial data when assessing treatment harm in favour of lower quality surveys and qualitative studies”.
The committee also “minimised the importance of fatigue as an outcome”, according to the analysis, published in the Journal of Neurology, Neurosurgery and Psychiatry.
The Nice committee also “recommended an energy management approach in the absence of supportive research evidence”.
A Nice spokesperson said: “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.”
Dr Charles Shepherd, medical adviser for the ME Association, said: “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 2021 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.
“It 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.
“The guideline’s recommendations have been widely welcomed by the ME/CFS patient community, and by most healthcare professionals who are actively involved in supporting people with ME/CFS in both primary and secondary care here in the UK and overseas.”
