New guidance comes after campaigners warned people were being ‘seriously harmed’
Graded exercise therapy should no longer be recommended for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a health watchdog has said, in a victory for campaigners.
New guidance from the National Institute for Health and Care Excellence (Nice) on ME 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.
Campaign group ME Action UK had urged Nice to publish the guideline – which said graded exercise should not be recommended – without delay, saying evidence demonstrates 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”.
Sian Leary, from the group, said not publishing the guideline in August had been “devastating to thousands of people with ME” who she said had been “seriously harmed by graded exercise therapy”.
Nice held a roundtable meeting in London on October 18 with relevant professional organisations and representatives from interested patient groups to discuss “key issues” around the guideline.
It has now pressed ahead with publication, and no longer recommends graded exercise (GET), where a person’s baseline level of activity is determined and then they are given a programme to increase their activity in stages.
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.
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 now, treatments included cognitive behavioural therapy (CBT), graded exercise therapy and medication to control pain, nausea and sleeping problems.
The new 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.
The guideline says people should be given a personalised plan, led by the person living with ME/CFS with support from a healthcare professional, that can be applied to any type of activity (cognitive, physical, emotional or social).
Reviewed regularly, Nice said this is designed to help people understand their energy limits so they can reduce the risk of over-exertion worsening their symptoms.
Regarding CBT, Nice said this has sometimes been assumed to be a cure for ME/CFS.
It 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.
The guideline also recommends a route to earlier diagnosis for those with ME/CFS, reducing the time from four months to three that a person needs to have persistent symptoms before a diagnosis is made.
It said symptoms of ME/CFS are debilitating fatigue that is worsened by activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties (brain fog).
People with all four symptoms that have lasted three months or more should be directed to a ME/CFS specialist team for diagnosis.
Baroness 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.”
Professor Chris Ponting, from 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.”
Dr Alastair Miller, a consultant physician in infectious disease and internal medicine, said: “It is unfortunate that Nice continue to misrepresent GET as ‘fixed incremental increases in physician activity or exercise’ whereas in practice, the approach in most CFS/ME clinics has always been to tailor increasing activity to individual’s needs and requirements, in line with (Nice) current recommendations.
“It is also unfortunate that they say that exercise/activity cannot be regarded as a ‘cure’ for CFS/ME and yet they accept that it may relieve symptoms.”