Ingrid Torjesen, British Medical Journal, 10 November 2020
Graded exercise therapy (GET) should no longer be offered for the treatment of chronic fatigue syndrome (CFS, also known as myalgic encephalomyelitis), the National Institute for Care and Health Excellence (NICE) says in draft guidance.
Instead patients should be encouraged to remain within their “energy envelope” so as not to worsen their symptoms, it advises.
Likewise, cognitive behavioural therapy (CBT) should no longer be offered as a treatment, NICE adds, although it can be offered as a psychological therapy that aims to help patients to manage their symptoms.
The revisions have been based not only on published evidence but also on patient reports that the treatments did not benefit them, and that in some cases GET caused harm.
- British Medical Journal: NICE backtracks on graded exercise therapy and CBT in draft revision to CFS guidance | 10 November 2020
In July, NICE cautioned against the use of GET for patients recovering from covid-19 who were experiencing post-viral fatigue, saying that its current advice on managing chronic fatigue may not be appropriate for this group of patients and hinting that its advice for other groups might be out of date.
Hopes were raised among groups representing patients with CFS that NICE’s review of its 2007 recommendations might take account of multiple reports of harms associated with GET from patients.
The long-awaited draft update recognises that CFS is a complex, multi-system, chronic medical condition for which there is no “one size fits all” approach because an intervention that may benefit some could harm others.
- ME Association: What do you think about the new NICE Clinical Guideline on ME/CFS? | 10 November 2020
It stresses the need for a tailored, individualised approach based on establishing a partnership with the patient that allows joint decision making and informed choice.
The draft guidance says that patients should remain in their “energy envelope” when undertaking activity of any kind, emphasising that “each person has a different and fluctuating energy limit, and they are the best judge of their own limits.”
Specifically, because of the harms reported by patients and the guideline committee’s own experiences, the guideline says that GET should not be offered.
- ME Association: NICE Press Statement & Media Coverage of New Clinical Guideline on ME/CFS | 10 November 2020
Any physical activity programme should establish the physical activity capability level that does not worsen symptoms, be overseen by a physiotherapist or occupational therapist with expertise in CFS, and reviewed regularly, it says.
The guideline also recommends reducing the time that a patient needs to have persistent symptoms before a diagnosis can be confirmed from four to three months.
Paul Chrisp, director of the Centre for Guidelines at NICE, said:
“Controversy over the use of GET and CBT has served to alienate many people with CFS and in some cases undermine the confidence of those caring for them.
“The recommendations in this draft guideline have been developed by an independent committee that was guided not just by the clinical evidence, but also by the experience and testimony of people with CFS.
“The result is a guideline that will provide much needed clarity, set new standards for health professionals, and ensure that people with CFS have access to the right care and support.”
Some doctors were disappointed that GET and CBT would no longer be recommended by NICE.
Alastair Miller, deputy medical director at the Joint Royal Colleges of Physicians Training Board, said that while he was aware of the controversy over GET and CBT, many of his patients had benefited from them.
“There has never been any evidence of harm and they remain the only evidence-based treatment approach in CFS. It’s disappointing that NICE has chosen to exclude them from the updated guidelines,” he said.
Peter White, emeritus professor of psychological medicine, Queen Mary University of London, said:
“NICE is usually commended for being led by the science. It is therefore a surprise that this guideline proscribes or qualifies treatments for CFS for which there is the best evidence of efficacy, namely GET and CBT.
“It is also remarkable that the committee use the symptom of post-exertional fatigue as a reason for not providing GET, when the largest ever trial of GET showed that it significantly reduced this symptom more than staying within one’s energy envelope.”
- National Institute for Health and Care Excellence. Guideline: myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. Draft for consultation, November 2020.
- Torjesen I. NICE advises against using graded exercise therapy for patients recovering from covid-19. 21 July 2020.
- National Institute for Health and Care Excellence. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. Clinical guideline [CG53]. 22 Aug 2007.
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