Myalgic Encephalomyelitis (Hansard, 3 December 1997)

§ Mr. Boateng

Priorities for funding research in the Department are set very carefully, based on the burden of disease and other criteria. Bids for conducting research into chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) are therefore always considered on that basis. The Department continues to fund research into the management and treatment of CFS/ME through the National Health Service Research and Development Programme.

It is currently funding an on-going research project, costing about £60,000, which is looking at whether general practitioners are best placed to manage CFS/ME patients. A recently completed research project, costing over £65,000, considered whether a particular type of psychological treatment was effective in reducing disability in CFS/ME patients. The main agency through which the Government support medical and clinical research is the Medical Research Council. The Council currently provides support for one Small Project Grant in the area of Chronic Fatigue Syndrome entitled "The role of noradrenaline in the neuropsychological pathogenesis of the chronic fatigue syndrome". The total amount awarded was £37,000.

There are no plans to commission a national epidemiological study into CFS/ME. A number of small studies of epidemiology have indicated that prevalence is around 1–2/1000 of the population with a peak incidence in the 20–40 age group and a slight female predominance. Obtaining accurate epidemiological information is particularly difficult in the case of CFS/ME due to variations in definitions and the difficulties in making an accurate diagnosis. There is no single diagnostic test for CFS/ME. It is usually diagnosed by testing for and eliminating other conditions. People with CFS/ME can experience any or all of a wide range of symptoms, but chronic fatigue is a key factor in the syndrome.

The Government have not carried out a consultation of people who suffer from CFS/ME. However, we have funded CFS/ME voluntary organisations who have close contact with sufferers. Since 1988, we have made over £225,000 available to CFS/ME organisations and by 1998, this will have risen to over a quarter of a million pounds.

The NHS provides a wide range of services to which sufferers of CFS/ME have access and such patients are seen within a wide range of community services and hospital specialties. Patients can discuss the options available to them with their GP and they may also request an assessment of their needs by local authority social services departments. It is the responsibility of health authorities to decide how the needs of CFS/ME sufferers should be met and whether or not they should purchase dedicated services. All such decisions are made in the light of competing priorities and finite resources.

We consider that it is more appropriate for clinical guidelines to be produced by clinicians themselves or through their representative professional bodies. Establishing definitions of disease and the criteria for their diagnosis is also a matter for the professions. Furthermore, the Medical Royal Colleges point out that, whilst CFS/ME should be managed by GPs, it is inappropriate at present to issue clinical guidelines given 262W the lack of methodologically sound research. There is no single effective treatment for CFS/ME. The condition varies significantly from one patient to another and therefore individual patients benefit from different treatment regimes.