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A health watchdog has scrapped a previous recommendation of graded exercise therapy for ME.

The National Institute of Health and Care Excellence (NICE) has published a long-awaited and contentious final update to guidance on treatment.

Many patients with ME or chronic fatigue syndrome (CFS) say the therapy, which encourages patients to slowly increase their levels of activity, makes their condition worse.

The advice was due out in August.

But NICE pulled the publication at the last minute.

At that time, NICE said the delay was necessary to allow more conversations with patient groups and professionals, so that its advice would be supported.

There are strong and varied views on how the illness should be best managed.

The updated guidance for England and Wales recommends people judge their own “energy limit” when undertaking activity of any kind, and a physical activity programme should only be considered in specific circumstances.

It warns practitioners: “Do not advise people with ME/CFS to undertake exercise that is not part of a programme overseen by an ME/CFS specialist team, such as telling them to go to the gym or exercise more, because this may worsen their symptoms.”

It also clarifies advice on a talking therapy, known as CBT, stressing that it is only helpful in treating anxiety around the condition, not the illness itself.

And it emphasises the need for early and accurate diagnosis.

Baroness Finlay, a consultant in palliative medicine and vice-chairwoman of the guideline committee, said: “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.”

ME Research UK said the publication was “a significant step in both the acceptance of ME as a physical illness and recognition of appropriate treatment needs of those affected by the condition”.

Sian Leary from the campaign group ME Action UK, 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”.

Dr Charles Shepherd, medical adviser to the ME Association, said: “This new guideline will have a big impact on care for people with ME, and draws a line under the damaging therapies of the past.”

Dr Alastair Miller, an NHS consultant physician in acute medicine and infectious disease in North Cumbria, said exercise programmes could be helpful: “It is unfortunate that so much emphasis is given to working ‘within current energy limits’ rather than a gentle and controlled pushing of those limits.

“However, it is to be welcomed that clinics will still be able to provide appropriate personalised activity and exercise programmes for those patients in whom it is felt to be appropriate.”

Prof Peter White from Queen Mary University of London said: “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.”

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