Statements from Major ME/CFS Charities over Court Ruling
Posted Mar 13 2009 3:14pm
25% ME Group Response to the ruling concerning the NICE Judicial Review into ME/CFS Guidelines
13 March 2009
This is certainly a very sad day for everyone with neurological ME. A disease that devastates the lives of sufferers and their carers, a disease that not only strips sufferers of their livelihoods, but that often leaves them totally reliant on carers for their everyday needs. I am also extremely worried where this will lead in relation to the so called treatment therapies of Cognitive Behavioural Therapy and Graded Exercise Therapy. These treatment s in many cases have caused wide spread problems for ME sufferers. Our Report from 2004 http://tinyurl.com/25megroupanalysis see last page) reported serious flaws in the therapies and also the fact that many were not helped and a great deal more were harmed by undertaking these programs. Many of these sufferers were not even severely affected patients before undertaking the therapies!
We have previously quoted that these therapies are flawed when the NICE Guidelines were released: “Patient experience of this serious neurological illness, which affects up to 240,000 people in the UK has been all but ignored in favour of a psychological approach. The illness affects many body systems and their functions, and an estimated 60,000 develop M.E. so severely they become bed or house bound, with others needing to be tube fed”.
We stand firmly behind this today, especially in light of this court ruling.
The ME Association also recently undertook a wide scale survey that also highlighted serious problems with these therapies “ This is despite the findings of the largest-ever survey of ME patient opinion carried out by The ME Association last year which found that only 26% were helped by CBT - while 56% reported that GET made them feel worse.”
We totally condemn NICE in the limited view that they have taken within the Guidelines and 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 (i.e. psychological, chronic fatigue etc.)
The 25% ME Group wishes to offer sincere and deep gratitude to the two brave individuals who challenged NICE over these flawed guidelines by taking them to court. Although, the case was lost it does highlight the serious need for research into this disease and we hope that all the efforts to raise awareness of ME will not be lost in this ruling and so we, along with other individuals and like-minded charities who understand the consequences of these flawed NICE Guidelines, will continue to campaign for them to look at the real evidence concerning ICD 10 ME.
High Court challenge against NICE is dismissed | 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.
High Court supports ME treatments that are ineffective or harmful
The legal challenge to the NICE Guideline on ME/CFS was lost in the High Court today – when it was dismissed by Mr Justice Simon. More details later. Please find The ME Association’s immediate response below.
People with ME/CFS now face a situation where doctors will continue to recommend two forms of treatments that many people with the illness find ineffective or even harmful.
The ME Association is disappointed that the High Court Judicial Review of the NICE Guideline on ME/CFS found in favour of NICE.
Recommendations that two controversial treatments – cognitive behaviour therapy (CBT) and graded exercise treatment (GET) – be offered as front-line treatments for those with mild to moderate forms of the illness remain unchanged.
This is despite the findings of the largest-ever survey of ME patient opinion carried out by The ME Association last year which found that only 26% were helped by CBT – while 56% reported that GET made them feel worse.
The ME Association believe that the two people with ME who took up the legal challenge were fully justified in seeking a court hearing into the processes used by NICE to draw up the Guideline.
Despite the Judicial Review failing to result in withdrawal of these potentially dangerous guidelines, The ME Association maintains that the evidence relating to both clinical and cost effectiveness does not justify the emphasis and optimism being given to these two treatments. NICE’s recommendations cannot be justified by the evidence.
We shall continue to ask NICE to review the contents of what we maintain is a seriously flawed and unhelpful Guideline.
Note to Editors:
For further comment from The ME Association, please contact our Publicity Manager, Tony Britton