A disputed therapy that encourages people with ME to gradually increase physical activity will no longer be officially recommended, a health watchdog said, marking a victory for campaigners.
The controversial treatment, called graded exercise therapy, has been removed from guidance given by the National Institute for Health and Care Excellence (Nice) for diagnosing and managing myalgic encephalomyelitis, which is also known as chronic fatigue syndrome.
The long-awaited landmark guidance had been due in August but was put on hold following concerns from some groups over its contents. It is thought some health professionals had been unhappy with some of the recommendations made by Nice.
The campaign group ME Action UK had urged Nice to publish the guideline – which said graded exercise should not be recommended – without delay, saying evidence demonstrated that graded exercise “harms most people with ME” and that any evidence supporting its use “was deemed to be of low or very low quality by the independent Nice guideline committee”.
Charities and patient groups had been fighting for greater recognition of the condition as a medical illness rather than psychological problem. Graded exercise therapy (GET) involves incremental increases in physical activity to gradually build up tolerance. Patient groups have argued that its use suggests those with ME have symptoms due to inactivity.
ME is thought to affect about 250,000 people in the UK and has been estimated to cost the economy billions of pounds annually. The condition includes sufferers experiencing mental fogginess, pain and a debilitating loss of energy.
It can affect anyone, including children, but is more common in women, and tends to develop when people are in the mid-20s to mid-40s age bracket. Treatments have included, besides graded exercise therapy, medication to control pain, nausea and sleeping problems, as well as cognitive behavioural therapy.
Sian Leary, from ME Action UK, said not publishing the guideline in August had been “devastating to thousands of people with ME” whom she said had been “seriously harmed by graded exercise therapy”.
Nice held a roundtable meeting in London in October with professional organisations and representatives from interested patient groups to discuss key issues around the guideline.
The new guideline says that ME/CFS is a complex condition where there is no “one size fits all” approach to managing symptoms, and adds that any therapy would depend on patient preferences and should not represent a fixed increase in activity.
The guideline says people should be given a personalised plan that is reviewed regularly. Nice said this was designed to help people understand their energy limits so they could reduce the risk of over-exertion worsening their symptoms.
The guideline also recommends a route to earlier diagnosis for those with ME/CFS, reducing the time-span for persistent symptoms from four months to three before a diagnosis is made.
Lady Finlay, consultant in palliative medicine and vice-chair of the guideline committee, said: “ME/CFS is a complex long-term condition that causes disordered energy metabolism and can be profoundly disabling. Those with ME/CFS need to be listened to, understood and supported to adapt their lives.
“The committee members involved in this guideline have worked particularly hard to ensure care becomes more empathetic and focused on the individual’s needs.”
Prof Chris Ponting, at the Institute of Genetics and Molecular Medicine, University of Edinburgh, said: “The new Nice guidelines will improve the lives of people with ME worldwide, well beyond England and Wales. They will improve awareness that graded exercise often makes ME symptoms worse.
“Nice took due care and attention developing these guidelines, applying their rigorous methods and listening to highly regarded professionals and lay people. Low and very low-quality scientific evidence was rightly discarded.
“Graded exercise therapy and cognitive behavioural therapy cannot now be offered as cures. The new guidelines vindicate the longstanding views of many people with ME, their carers and families.”
Prof Peter White, emeritus professor of psychological medicine, at Queen Mary University of London, said: “Having looked after many patients with this illness I worry that this guideline seems to suggest that patients need to learn to live with CFS/ME, rather than be helped to recover from it.
“Nice have banned graded exercise therapy, in spite of it being found to be helpful in a major Cochrane systematic review, while recommending an energy management programme which involves ‘staying within your energy limits’, for which there is little evidence for it helping, and some evidence that it doesn’t.”