22 August 2007
National Institute for Health and Clinical Excellence (NICE) has published its guidelines on the diagnosis and management of M.E. (myalgic encephalomyelitis / encephalopathy) or chronic fatigue syndrome today, 22 August 2007.
The trustees’ initial response to the guideline is given below and in a press release which has also been issued.
Partnership model
Action for M.E. is vigorously committed to representing the needs of all those with M.E. of whatever severity or duration. The vast majority of people with M.E. rely on the NHS for their treatment and care. Therefore Action for M.E. believes the most effective way to improve the quality of care for people with M.E. is to engage in a critical partnership with the NHS. We seek to bring the patient’s voice to the heart of NHS commissioning and service delivery.
Opportunity to improve services
We believe that the guidelines represent an opportunity to drive forward the improvement of services for those with M.E. and it is for that reason that we support them. In particular we would like to highlight the following aspects of the guidelines which we feel require support
- patient centred approach (not ‘one-size-fits-all’)
- emphasis on partnership between healthcare professionals and patients, their families and carers
- commitment to inform patients about a wide range of therapies and management strategies
- commitment to the patient setting goals and the pace of treatment
- multidisciplinary working
- commitment to continuity of care
- need for schools/employers to be better informed
- assistance in negotiating healthcare, benefits and social services
Guideline flaws
The Guidelines are still influenced by the history of research in this area, which has produced findings that can not be generalised to all people with M.E. and which therefore once again place an over-emphasis on CBT and GET.
Monitoring
As a critical partner we will use our connections with patients to rigorously monitor the implementation of the guidelines to ensure that people with M.E. will receive the most positive and effective forms of care.
Two-year review
These guidelines have a two year lifespan before they are reviewed, unless there are significant developments beforehand. Action for M.E. hopes that the research on the patient-centred and patient-developed model of management – pacing - will be available then and this research would provide a counterbalance to the over-reliance on CBT and GET.
Greater investment
The potential for the NICE guidelines to improve practice can only be fully realised if services for people with M.E. are fully funded and we will campaign energetically for a greater level of investment, particularly in those areas that pioneer new models of service delivery that address the position of children and the most severely affected.
We also campaign for the early diagnosis of the illness and for the widest information about treatment choices for the newly diagnosed. It follows that we wish to see more and better training in M.E. for all doctors and especially General Practitioners.
We have campaigned and will be campaigning strenuously in future for massively greater investment in bio-medical research into the aetiology and pathogenesis of M.E. as a way of finding more effective treatments. It is only through greater research that significant improvements in the outlook for people with M.E. can be made.
Further analysis
Action for M.E. will publish detailed analysis of the full guidelines in due course.
