On the day following Action for ME’s Press Release supporting the NICE Guideline CG53 on CFS/ME, the ME Association issues a reversal of its previous position on support for a Judicial Review of the NICE Guideline.
The ME Association’s Press Release (6 February) is published, below, followed by the Press Release from Action for ME (5 February) and a statement published by the young person’s organisation, AYME (9 January).
For the Press Release published by the legal team Leigh Day & Co, on 4 February, go to:
NICE Judicial Review of the NICE Guideline CG53 for CFS/ME
Leigh Day & Co | Press statement | 04 February 2009
“Not so NICE for ME”
ME Association | Press Release | 06 February 2009
ME Association fully supports legal challenge to the NICE Guideline on ME/CFS
The ME Association will be fully supporting the two people with ME – Douglas Fraser and Kevin Short – who have succeeded in achieving a Judicial Review into the 2007 NICE Guideline on ME/CFS.
The Judicial Review, which could result in the NICE guideline being withdrawn, is taking place at the Royal Courts of Justice in The Strand, London on 11 and 12 February.
The four key reasons why the MEA believes the NICE guideline on diagnosis and management of ME/CFS is unfit for purpose are as follows:
- NICE has broadened the diagnostic criteria as to what can be diagnosed as ME/CFS.
- NICE advocates a “two sizes fits all” approach to management in that far too much emphasis is being placed on the role of cognitive behaviour therapy (CBT) and graded exercise therapy (GET) – treatments that significant numbers of people with ME/CFS consistently report to be either ineffective or even harmful in the case of graded exercise.
- NICE has broadened the diagnostic criteria as to what can be diagnosed as ME/CFS.
- NICE has failed to properly address, or not addressed at all, many of the important non-drug aspects of management such as benefit provision; diet and nutrition; and occupational health.
- The MEA believes that our decision to classify the ME/CFS guideline as ‘unfit for purpose’ has widespread support from our membership. In an on-line survey of public opinion carried out via the MEA website in December, 91% of those who took part supported the MEA position, only 6% did not.
The current online poll on NHS service provision also suggests that following implementation of the NICE guideline in August 2007, people with ME/CFS do not believe that they are receiving the sort of management advice that should be available from both general practice and hospital based services. Current ratings for NHS service provision being: 47% – very poor; 22% – poor; 15% – no longer use the NHS; 8% – average; 6% – good and 2% – excellent.
More information on the practicalities of attending the Judicial Review can be found by clicking
Note to Editors:
For more details about the ME Association’s position, please contact:
Tony Britton, Publicity Manager, The ME Association
Tel: 01406 370293 Mob: 07880 502927
Action for ME | Press Release | 05 February 09
National charity supports NICE: judicial review 11-12/02/09
05 February 2009
Medical guidelines on the diagnosis and management of M.E. and chronic fatigue syndrome will be challenged in a judicial review at the Royal Courts of Justice, The Strand, London, 11-12 February 2009.
The case against the National Institute for Health and Clinical Excellence (NICE) is generating considerable interest among the 250,000 people in the UK who have M.E., as some patients hope the legal proceedings will lead to the withdrawal of the guideline.
However, Action for M.E., the country’s biggest M.E. charity, supports 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.
“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. Go to www.afme.org.uk
1. Action for M.E.’s response to the NICE guideline, published August 2007, may be found at: http://www.afme.org.uk/news.asp?newsid=337
2. Action for M.E.’s health and welfare survey may be found here.
3. The NICE guideline is also supported by the Association of Young People with M.E., www.ayme.org.uk
4. People with M.E. who support the judicial review against the NICE guidelines have set up a website at: http://www.nicemecourt.co.uk/
5. Action for M.E. is the UK’s leading charity campaigning to improve the lives of people with M.E. We have been lobbying for more research, better treatments and services since 1987, and we provide information and support to people affected.
6. M.E. (Myalgic Encephalomyelitis/ Encephalopathy) is a chronic, fluctuating illness. It is also known as Chronic Fatigue Syndrome (CFS). Sometimes it is diagnosed as Post Viral Fatigue Syndrome (PVFS). Common symptoms include overwhelming exhaustion, muscle pain and problems with memory and concentration.
AYME | Statement | 19 January 09
AYME’s statement on the Judicial Review of the NICE Guideline on CFS/ME Judicial review of the NICE Guideline on CFS/ME
A judicial review of the National Institute for Health and Clinical Excellence, (NICE) Guideline on CFS/ME was scheduled for 11 and 12 February 2009. Patients and medical researchers claim that the correct protocols in producing the Guideline were not followed. Patient groups fear that some patients could be pressured into accepting treatments which at best may be useless and at worst could cause real harm.
Why AYME welcomes the NICE Guideline
Funding is now available for CFS/ME patients that was not there before. Strategic Health Authorities and Primary Care Trusts (PCTs) have to fund NHS management provisions such as physiotherapy, cognitive behavioural therapy (CBT), activity management programmes and treatment (medication) for the patient.
AYME acknowledges that the Guideline is not perfect. The 317-page NICE Guideline on CFS/ME was written after taking account of 169 stakeholder groups and individual responses as well as personal testimonies from people with CFS/ME. Any consensus document based on limited research evidence of cause, management and treatment is going to have areas that cause disagreement. The NICE Guideline is a foundation for us to work with. The Guideline review, date to be confirmed, will have further evidence to inform its current advice on the care and treatment options that should be available in the NHS.
Guideline provides access to treatment
In our view the Guideline gives patients and patient organisations an effective tool to ensure that PCTs deliver the services that people with CFS/ME need. The delivery of such services has for too long been patchy at best and non-existent at worst. Before the Guideline was in place there were no statutory obligations for PCTs or strategic health authorities to provide services for anybody with CFS/ME. Now they have to say how they are providing this service and if they don’t provide any in the area, they have to fund it out of the area. Before the Guideline, people faced years of battling to get a service.
The NICE Guideline gives the patient choice. It doesn’t compel the patient to attend treatment. The Guideline will help those who have previously fallen through gaps in the healthcare system, such as the severely affected and housebound.
The Guideline emphasises patient involvement, patient-centred programmes and patient choice: this is its strength. CFS/ME is an individualised condition which affects every patient differently. One model of management will not suit everybody. The CFS/ME team explores with each person what suits them and what would help them.
All CFS/ME specialist services are networked and have been receiving training informed by patient feedback for the last five years. Some of the lead clinicians have twenty years’ experience of treating CFS/ME. Each of the specialist services has a patient representative and AYME is represented on several of these teams.
The NICE Guideline emphasises that management and treatment of CFS/ME must be delivered by professionals who are trained and experienced in the complexity of the condition. AYME acknowledges that inappropriate delivery of CBT and graded exercise therapy (GET) would be harmful.
‘Healthcare professionals responsible for caring for people with CFS/ME should have appropriate skills and expertise in the condition’. 126.96.36.199 ‘Primary healthcare professionals should be familiar with and be able to identify the characteristic features of CFS/ME’. 188.8.131.52 Healthcare professionals should be aware that symptoms of CFS/ME fluctuate in severity and may change in nature over time’. 184.108.40.206 ‘Advice on symptom management should not be delayed until a diagnosis is established’. 220.127.116.11
How AYME uses the NICE Guideline
Using the Guideline, AYME has helped get access to treatment for children and young people that are bedbound and housebound with CFS/ME. The publication of the Guideline has meant that AYME members have been able to access treatment that they have been fighting to receive for many years. By making it clear that CFS/ME is a condition that should be recognised by medical professionals, by providing clear guidance on the treatments that should be made available to patients and by emphasising the importance of a patient-led programme of treatment, the Guideline has taken a vital step towards securing higher quality care for CFS/ME patients.
What it would mean to lose the NICE Guideline
Immediately the funding of the specialist CFS/ME teams would at risk. Fighting to get more services in areas where there are none would be impossible. We would not have got the East and North Hertfordshire CFS/ME service reinstated (see article). The Leeds CFS/ME service would not have got its paediatric funding back.
If we lost the NICE Guideline, we would see less professionals attracted to working in CFS/ME. We’d go back to the bad old days of no services, children not being seen, believed or understood and a lack of awareness among other professionals in social care and education.