A controversial type of exercise regime for people with chronic fatigue syndrome should no longer be offered routinely as a treatment in England and Wales, the National Institute for Health and Care Excellence (NICE) said.
An updated draft guideline accepted that programmes based on fixed incremental increases in activity or exercise could harm some people with myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
The decision to stop graded exercise therapy (GET) in children, young people, and adults was welcomed by patient groups who have argued that the practice could be harmful.
However, some experts criticised NICE for abandoning ME/CFS treatments with a solid clinical track record.
Patients 'Have Voiced Their Concerns'
NICE said that neither GET or cognitive behavioural treatment (CBT) should be regarded as a cure for ME/CFS.
Adam Lowe, a lay member of the guideline committee, said: "ME/CFS patients have been voicing their concerns about graded exercise therapy for a long time, and the evidence presented to the committee supported these concerns.
"One of the key points in the draft guideline is that exercise is not a treatment or cure for ME/CFS and should not be presumed to be safe for those with this disabling and often neglected illness.
"The approach it recommends is a pragmatic one which allows patients to self-manage themselves, within their daily limits, while using readily available interventions to address the most serious of their symptoms first."
The new draft guideline was underpinned by acceptance that ME/CFS is a complex, multi-system, chronic medical condition that could not be treated with a 'one-size-fits- all' approach.
It recommended that any programme of physical activity should only be delivered after establishing a patient's physical capability at a level that will not worsen their symptoms.
Any physical activity programme should only be delivered or overseen by a physiotherapist or occupational therapist with training and expertise in ME/CFS, and must be regularly reviewed, the guidance stated.
NICE said that while CBT was not a cure, it could be used to help improve wellbeing and quality of life.
Patients 'Feel Alienated'
Health professionals should also recognise that people with ME/CFS may feel wary of trusting them if they have encountered doubt about their symptoms and condition.
Paul Chrisp, director of the Centre for Guidelines at NICE, said: "ME/CFS can cause profound, long-term illness and disability, and much of the distress surrounding it is caused by difficulties in recognising, acknowledging, and accepting the condition and its impact.
"This has been compounded further by a lack of effective treatments, wide variation in access to services, and by controversy over the use of graded exercise therapy and CBT that has served only to alienate many people with ME/CFS and in some cases undermine the confidence of those caring for them."
It is estimated that ME/CFS affects around 250,000 people in the UK, with about 2.4 times as many women affected as men.
The draft guideline recommended reducing the time from 4 months to 3 months that a person needs to have persistent symptoms before a diagnosis of ME/CFS can be confirmed.
The ME Association said it was pleased that NICE "has addressed many of the defects in the current guideline on ME/CFS".
“In particular, we welcome the decision to no longer recommend graded exercise therapy (GET) as a treatment for ME/CFS and the decision to give heightened recognition to the many problems faced by people with severe ME/CFS.
“We do, however, have concerns about some of the diagnostic recommendations. And there is a need to provide far more information on symptom management that is specific to ME/CFS."
Guidance 'Could Deny Some Patients Treatment'
Some experts with experience of treating the condition said they were concerned that some patients who wanted GET or CBT might find it harder to access those treatments in the light of the proposed guidelines.
Trudie Chalder, professor of cognitive behavioural psychotherapy at King's College London (KCL), said: "Our clinics are full of patients who are very keen to receive these evidence-based treatments and our patient reported outcomes support their use."
Prof Sir Simon Wessely, regius chair of psychiatry at KCL, said people with ME/CFS "should rightly beware any claims of miracle cures from any quarter, but be reassured that existing programmes that take a cautious, collaborative, clinically supervised approach, backed by evidence from randomised controlled trials, the gold standard of assessing effectiveness, offer some hope of meaningful improvement in what remains a complex, little understood and still sometimes misunderstood condition".
Peter White, emeritus professor of psychological medicine at Queen Mary University of London, said he was surprised that NICE had limited access to two treatments known to help patients with the condition. He told the Science Media Centre that it could "discourage healthcare professionals from offering the two treatments that give patients the best chance to safely improve their health".
A consultation on the draft guidance closes at 5pm on 22 December 2020.
