Legal challenge to NICE guidance on ME/CFS

From the ‘Daily Mail", November 14

Yuppie flu campaigners fight ‘mental illness’ label

by Sophie Goodchild

‘Yuppie flu’ campaigners are going to court to try to force the Government’s health watchdog to stop defining it as a psychiatric illness.

The National Institute for Health and Clinical Excellence (Nice) could have to rewrite its new guidelines on chronic fatigue syndrome, also known as ME.

A pressure group is taking High Court action in what is understood to be the first case of its kind. The One Click Group, which has 8,000 online supporters worldwide, is challenging Nice’s treatment advice on the grounds that it labels sufferers as mentally ill.

Nice told doctors in August this year that they should prescribe psychological therapy and "graded" exercise for ME patients.

But Jane Bryant, director of One Click, said Nice ignored studies that show ME is a recognised medical condition and not a psychiatric illness. Ms Bryant’s son Ben, 13, was diagnosed with a form of ME six years ago.

The former public relations manager from London said: "This is going to be a David against Goliath case. The guidelines have excluded the majority of the medical evidence which proves that ME is a physical not a psychological illness. They (Nice) haven’t listened to the patients."

ME is estimated to affect a quarter of a million people in Britain, especially children. Symptoms include poor quality sleep, headaches and bouts of infections.

The Medical Research Council (MRC) is carrying out two large clinical trails into the effectiveness of treatments at a cost of £2.5 million.

The medical profession is fiercely divided over the exact cause. Some

experts are sceptical that ME is a specific illness and say the symptoms are caused by mental health problems.

Others say that it is caused by a virus and that the type of exercise recommended by Nice can even make the illness worse. It is understood to be the first time that Nice has faced court action over its own health guidance.

Earlier this year, drug companies lost a case against Nice over its refusal to fund lifesaving dementia drugs.

The One Click Group is being represented by Saunders solicitors which is expected to lodge court papers next Wednesday for the judicial review.

Dr Charles Shepherd of the ME Association said: "The Nice guideline is seriously flawed because they take a ‘one size fits all’ approach to an illness which manifests itself in many different ways. There is no evidence that sufferers do benefit from psychological therapies."

Dr Neil Abbot from ME Research UK said: ‘There is undue emphasis in the final Nice guideline on psycho-social strategies.’

ENDS


(A similar story appeared in the London Evening Standard on Wednesday. The story made it to the front page of the Daily Telegraph on Thursday).

[The ME Association was unable to help fund the judicial review for reasons explained here]. 

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