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Sunday 27th May 2018

Were NICE wrong about ME?

19th November 2007

Dr Ann Robinson writes in the Guardian about NICE's guidelines for the treatment of ME, which could be the subject of a court case.


Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is a condition which causes passionate arguments and difference of opinion. The news that the One Click pressure group plans to take the National Institute for Health and Clinical Excellence (NICE) to court - in order to overturn NICE's guidelines on ME - will stir things up further.

NICE has the difficult task of issuing guidelines and recommendations in "areas of medicine where evidence is not always clear cut." NICE's guidelines are necessary precisely because these areas are not clearly defined.

So why are NICE under fire? Their guidelines, issued in August 2007, were the first "coherent" advice given to doctors about how to treat people suffering from ME.

Over 193,000 people in the UK have the condition, which can cause tiredness, pains and insomnia. Although some strains are mild, around one quarter of people with the condition have the severe form.

NICE's guidelines were put together after consultation with a wide range of relevant parties, including people with the condition.

The guidelines were criticised because they suggested cognitive behavioural therapy (CBT) and exercise might help symptoms of ME. CFS/ME groups said this kind of treatment would not help people who had severe forms of the illness and also gave the idea that the condition was a "mental illness."

This is false - CBT has been recommended for illnesses as diverse as heart disease and cancer. NICE have done nothing wrong in suggesting it might help sufferers who have symptoms of anxiety about their condition.

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