The National Task Force on CFS/ME

Chairman: Prof. Peter Campion
Professor of Primary Care Medicine, University of Hull

Report on
NHS Services for people with Chronic Fatigue Syndrome / Myalgic Encephalomyelitis

This second report by the National Task Force was launched recently on the national media. It aims to offer guidance and recommendations on NHS services for people with CFS/ME. It includes details of clinics and other services throughout the country.

The Task Force Report is available from:

14/12/98

Main Message

There is an urgent need to provide at least a minimum service for people with chronic fatigue syndrome/me. The present lack of services is wasteful and costly.

Key Points

1. Chronic Fatigue Syndrome (CFS) or ME is real, widespread, seriously incapacitating and not yet fully understood.
   • The reality of the illness has been confirmed by a recent statement from the Chief Medical Officer (July 1998) as well as by reports from the Medical Royal Colleges (1996) and the National Task Force on CFS/ME (1994).
   • Between 0.3 and 2.6 per cent of the population are affected, i.e. between 170,000 and 1.5 million in the UK.
   • Sufferers can be housebound and even bedbound in some cases.
   • The causes are not fully understood An open mind is essential.
   
   
2. Many people in the UK do not have access to oven a minimum service.
   • Many patients do not have access to a GP who knows how to diagnose and manage the condition.
   • Many GPs do not have access to specialists who can advise them.
   • Harmful attitudes and practices among health professionals are commonplace.
   • There are very few rehabilitation programmes available.
   • There are only ten specialist NHS units in the whole of the UK. and waiting lists can be over a year.
   • There are huge regional disparities in services.
   
   
3. Effective intervention is possible.
   • Good early management can prevent secondary (complications.
   • Biological. social and psychological aspects need to be considered as in other long-term illnesses.
   • Early diagnosis. advice about lifestyle management and skilled support are all helpful.
   • Pacing, i.e. balancing rest and activity. is the cornerstone of recovery. A gradual increase ill activity should be the aim, although this is not always achievable.
   • There is increasing valid clinical evidence of the efficacy of a range of treatments.
   • Valuable expertise has been built up by clinical specialists.
   • Management should be flexible and tailored to each individual.
   
   
4. The current failure to provide at least a minimum service is wasteful and costly.
   • It leads to unnecessarily severe and prolonged illness.
   • The present cost to the country is estimated to be at least £1 billion per annum.
   
   
5. Patients and patients' organisations should be consulted in the provision of services.
   • Clear, communication between doctors and patients is important.
   • NHS Trusts should work to establish constructive relations with patients' representatives.
   • Patients' organisations have much experience in providing information and support.
   • The resources of patients' organisations could be utilised much more,
   
   
6. Immediate steps should be taken to provide an initial minimum service in each district.
   • It should cater for at least 0.1 percent of the population.
   • Most cases should mainly be managed in Primary Care.
   • GPs need to be motivated and to be provided with information, training and support.
   • Occupational therapist, physiotherapists etc. should be recruited and trained.
   • Specialist services should be provided In each district or referral arrangements should made with specialist services in neighbouring areas.