by Jonathan Liew
Charities have condemned a court decision to throw out a bid by two ME sufferers to change guidance given to NHS doctors on treating the condition.
Douglas Fraser, a former violinist for the Scottish Philharmonic Orchestra, and Kevin Short, an engineer from Norfolk, argued that the guideline issued by Nice, the England and Wales NHS spending watchdog, unlawfully restricted the range of treatments available.
They claimed that decisions made by Nice were biased, or appeared to be biased, and that this was a view "shared across the ME community".
Mr Fraser and Mr Short, who both suffer from Myalgic Encephalomyelitis (ME), also known as chronic fatigue syndrome, have had their careers curtailed by the illness.
Guidelines for diagnosis and management of ME were introduced last August and recommended that ME sufferers be treated with cognitive behavioural therapy and graded exercise therapy, in an effort to alleviate symptoms.
Lawyers for the two men complained that Nice’s panel of experts had a "predisposition" for recommending the two therapies to the exclusion of other treatments.
However, Mr Justice Simon yesterday cleared Nice of the accusation, rejecting it as "damaging" and "harmful". He said it "may cause health professionals to hesitate before they involve themselves in this area of medicine".
ME charities attacked the outcome, saying the two therapies were largely ineffective and reinforced the view ME was a psychological rather than a physiological disorder.
A survey by the ME Association last year found that only 26% were helped by cognitive behavioural therapy, while 56% reported that graded exercise therapy actually made them feel worse.
Simon Lawrence, chairman of the 25% ME Group, which represents the most severely affected sufferers of ME, said: "This is certainly a very sad day for everyone with neurological ME. Therapies have in many cases caused widespread problems for ME sufferers. We feel that much research into neurological ME was sidelined in favour of more mainstream therapies that are more suitable for patients with totally different conditions."
Nice’s guidelines are not automatically applied in Scotland, where recommendations are made by NHS Quality Improvement Scotland.
A spokesman for NHS QIS said it did not currently issue official guidelines on treating ME, with decisions left to the discretion of individual doctors. But Helen Brownlie of Scot ME, a Glasgow-based ME support group, said even though Nice guidelines were not binding, doctors in Scotland were influenced by it.
She said: "They were pushing graded exercise therapy, even though there’s no evidence for it. I think it’s totally misguided."
One ME sufferer from Edinburgh, who did not want to be named, said she had been offered cognitive behavioural therapy and physiotherapy, which had little effect.
She said: "Cognitive behavioural therapy is all psychological – the thinking is that the illness is all in your head, and you just have to try and take control of your own life. They’re also quite keen to give you anti-depressants.
"I also did a physiotherapy course which wasn’t terribly successful."