Chief Medical Officer's Working Group on CFS/ME                Home

Terms of Reference: To review management and practice in the field of CFS/ME with the aim of providing best practice guidance for professionals, patients and carers to improve the quality of care and treatment for people with CFS/ME

The first meeting saw a full attendance of a very diverse group, a constructive and collaborative atmosphere and the establishment of key working principles. The nature of the end product was agreed as was a preliminary view of the scope of work to be undertaken To assist the first meeting, a Scoping Document was drawn up by Dr Derek Pheby This Scoping Document will be released with our next Briefing. It is anticipated that the Group will be in operation for at least 18 months.

1.    Key working principles:

The Group must have maximum transparency' i.e. as much information about its activities to be distributed as possible to all potential interested parties To this end a Briefing will be issued after each meeting, summarising discussion and highlighting issues for future work. The Briefing will aim to reflect agreement and disagreement in the Group, so readers have a good picture of debate. Distribution will be by Website and paper based (to interested organisations for them to reproduce).

From time to time it may also be appropriate to use the media. One early possibility might be to use ME Awareness Week

All Group members must be kept involved throughout. This requires respect for differing positions, willingness to listen, learn and even to change our minds. We will ensure we make full use of all members, including those on the Reference Group, where there is a wide range of knowledge and expertise, and also will seek to 'capture' a range of views, which goes even beyond the Reference Group..

o    We should seek to identify areas of agreement and disagreement. If we can identify what we agree upon (one suggestion was 'up to 80%'), we can then be far more efficient by focusing our work on those specific disagreements, which are relevant to the Group's objective. Meanwhile, areas of legitimate uncertainty or disagreement, for example on causation, may need to be accepted and respected, so long as they do not impede provision of care etc

o    We will need smaller 'sub-groups' to do discrete pieces of work to feed into the full group
2.    The end product.

o    A clear, concise, practical and easy to comprehend document (or possibly several, tailored to different users) giving guidance for diagnosis and management, which will be usable by patients, carers, professionals and health service Commissioners

3.    Scope of work:

Listed below is the immensely wide range of potential issues for consideration which the Group identified From this preliminary exercise a focused and specific work programme will be distilled.

o    Research and Information Gathering. The final report will need to be based on best available evidence, including the results of randomised controlled trials and patients' and clinicians' experience To avoid unnecessary repetition, we should capitalise on existing studies and reports where they are relevant and sufficient

Potential areas requiring research identified at the first meeting are - (a) an epidemiological study, (b) a systematic review of current literature to establish if there is research evidence of sub groups, (c) a systematic review of treatments, (d) a review of current training of health and social care professionals, (e) an attitude survey of health and social care professionals. (f) a study of existing good management practice (for which we will first have to agree a definition)

Funding of the research agenda needs to be discussed with NHS R&D

We also need to acquire a broad range of existing diagnostic and management guidance - from health professionals and patient organisations here, and from overseas (especially the US, Canada, New Zealand and Australia)

o   Service Provision and Commissioning: Future service provision should be fully multidisciplinary, so people don't fall through gaps or experience replication of effort, investigation In contrast to the present, we want to achieve a really 'national' service with equity in access to diagnosis, treatment/management, specialists with appropriate expertise, state benefits Services will need to be much more comprehensive than at present One issue identified was respite care for the severely ill

We should not forget that the Commissioners hold the purse strings and will need to 'buy into' any report we produce in the end

o   Diagnosis; The issues raised here were - (a) the need for uniform agreed diagnostic criteria (b) ME or CFS - the implications of the possibility of subgroups, (c) the hazards arising from having long delays between the onset
of illness and diagnosis, (d) a shortage of medical expertise in diagnosing the condition, plus frequent disbelief in the existence of the illness, (e) the relative lack of consultants who are able to accept referrals, (f) the current tendency to make patients 'prove' that they are ill, (g) the need to tackle the disability, not just the diagnostic label.

Management & Treatment. Issues mentioned here were (a) the importance of a multidisciplinary approach, (b) tailoring management to individuals' needs, (c) appropriate roles for primary carers, specialists and patient organisations, (d) the role of complementary therapies, (e) the appropriate role of CBT, (f) the meaning and relevance of the mind-body paradigm, (g) patients and carers being part of the treatment/management process, (h) the importance of helping people cope better, even if they may not be 'cured'

o    Doctors & Patients: Questions raised under this heading were (a) training for medical and social care professionals, both pre and post qualification (b) empowering both physicians and patients so they feel they have something to give, (c) ways of developing respect between professionals and patient organisations, and drawing on eachother's expertise (d) incorporating ME/CFS into a chronic disease model

o   Sociocultura/ Impact: This encompassed questions such as how/whether ethnicity, gender, age & class affect, diagnosis, treatment & access to benefits

o    Benefits & Insurance: Issues raised here were the unreasonable and disproportionate problems experienced by people with ME when being assessed for benefits or making health insurance claims.


Members of the Information Group who contributed to this Briefing. Simon Lawrence, Tony Pinching, Alison Round, Naomi Wayne. Peter White


Contact Point:    Dr Leslev Cooper, Secretary to the Working Group, do A ction for ME. 4 Deans Court, St Paul's Churchyard, London EC4V 5AA.