Radical new official guidelines for treatment of chronic fatigue syndrome are set to shift care away from the perception that it is a psychological condition, it was announced today.
The draft guidance from the UK National Institute for Health and Care Excellence introduces the concept of an “energy envelope”, setting out limits for physical activity for individual patients.
It says that cognitive behaviour therapy should only be seen as a “supportive” psychological therapy and not a treatment or cure.
The UK Biobank estimates that 250,000 people suffer from the condition, described as ME/CFS.
It has provoked controversy for decades with patient groups accusing doctors of not recognising the condition – and scientists struggling to find physical causes. It was originally thought to be a post-viral condition.
NICE says the condition is a “complex, multi-system, chronic medical condition” and that there is no single approach to its care.
It says a programme of physical activity for patients should only be considered in specific circumstances – and that patients and doctors report suffering harm when patients exceed their “energy limits.”
Dr Peter Barry, a consultant paediatric intensivist in Leicester, who led the inquiry, said: “We know that people with ME/CFS have had difficulty in getting their illness acknowledged, and the draft guideline provides guidance for suspecting and diagnosing the condition, recognising that there is no specific test.
“The committee wasn’t able to make any recommendations for treatments because of a lack of evidence of effectiveness. Instead it emphasises the importance of a personalised management plan for areas such as energy management (including the importance of rest and the concept of an energy envelope), the treatment of specific symptoms, and guidance on managing flares and exacerbations.”
Baroness Ilora Finlay, a consultant in palliative medicine in Wales, was vice-chair of the guideline committee.
She 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. Many have suffered stigmatisation and prejudicial attitudes in the past; this guideline should ensure they receive more empathetic care.”
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