In a controversial U-turn, the UK’s National Institute of Health and Care Excellence (NICE) has gone back on its previous recommendation of prescribing exercise therapy for people suffering from ME or chronic fatigue syndrome (CFS).

The change in policy was revealed in the UK health watchdog’s long-awaited, final update to guidance on treatment for CFS.

The guideline identifies the symptoms of ME (myalgic encephalomyelitis) as debilitating fatigue that is worsened by activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties.

Graded Exercise Therapy
In its updated guidelines NICE makes it clear that any programme based on fixed incremental increases in physical activity or exercise – such as Graded Exercise Therapy – should “not be offered for the treatment of ME/CFS”.

The guidance also highlights the importance of ensuring that people “remain within their energy limits when undertaking activity of any kind”.

“Any physical activity or exercise programmes should only be considered for people with ME/CFS in specific circumstances and should begin by establishing the person’s physical activity capability at a level that does not worsen their symptoms,” the new guidance states.

“A physical activity or exercise programme should only be offered on the basis that it is delivered or overseen by a physiotherapist in an ME/CFS specialist team and is regularly reviewed.”

Support for people with ME/CFS
Peter Barry, consultant clinical advisor for NICE and chair of the guideline committee, said: “This guideline will provide clear support for people living with ME/CFS, their families and carers, and for clinicians. It recognises that ME/CFS is a complex, chronic medical condition that can have a significant effect on people’s quality of life.

“We know that people with ME/CFS have had difficulty in getting their illness acknowledged, and the guideline provides guidance for suspecting and diagnosing the condition, recognising that there is no specific test for it.

“The guideline emphasises the importance of a personalised management plan for areas such as energy management – including the importance of rest and staying within the individual’s energy limits – the treatment of specific symptoms, and guidance on managing flares and exacerbations.”