13 March 2009
Today, the judge ruled in favour of the National Institute for Health and Clinical Excellence (NICE) regarding its guideline on the diagnosis and management of M.E. (Myalgic Encephalomyelitis/ Encephalopathy) and chronic fatigue syndrome.
Action for M.E., the country's biggest M.E. charity, supports the guideline.
The guideline was challenged in a judicial review at the Royal Courts of Justice, The Strand, London, 11-12 February 2009.
The case generated considerable interest among the 250,000 people in the UK who have M.E., as some patients hoped the legal proceedings would lead to the withdrawal of the guideline.
CEO Sir Peter Spencer says:
"We understand and respect the arguments brought by Kevin Short, from Norfolk, and Douglas Fraser, from London, who have M.E., but overall we think the NICE guideline represents an opportunity to drive forward the improvement of services for people with M.E. most of whom obtain their treatment from the NHS.
"Yes, we are concerned by the emphasis on graded exercise therapy (GET) and cognitive behaviour therapy (CBT). Our latest health survey showed 34% of patients who had received GET in the past three years felt worse after treatment. The randomised controlled trials which are cited by NICE are given too much emphasis in view of their limitations.
"I would therefore refute today's NICE statement by Professor Littlejohns that the NICE guideline is "the gold standard for best practice in managing CFS/M.E.".
"At present there is no "gold standard". That is why so many patients are angry and upset. That is why we continue to campaign vigorously for more scientific research into this illness.
"Nevertheless we believe that there are other aspects of the NICE guideline which could bring considerable benefits, as long as there is adequate funding for its implementation, especially in terms of training health care professionals to understand M.E./CFS better.
"We are all aiming to achieve the same end result which is better treatment for all M.E. patients. However the route which Action for M.E. will take to bring this about will be to engage with the normal NICE review process.
"The one thing that patients, doctors and NICE all agree is that far more scientific research is needed into the disease mechanisms of M.E."
Action for M.E. works with the NHS as a critical partner, lobbying for more M.E. specialists and improved quality of treatment for M.E. patients. The charity also offers telephone support and a range of helpful publications.
Further information to follow as more details emerge.
Judicial review website by people opposed to the NICE guidelines
NICE statement about High Court ruling