Myalgic encephalomyelitis: a unique medical challenge Action for ME
Samantha Radford looks at the controversy surrounding myalgic encephalomyelitis
A collective sigh of relief was heard across the United Kingdom in January 2002 when the chief medical officer, Professor Liam Donaldson, published his working group report describing myalgic encephalomyelitis (ME) as a "real, debilitating, and distressing illness."1 The estimated 240?000 people in the United Kingdom who have ME - also known as chronic fatigue syndrome - have been holding their breath, waiting for the moment the illness would come out of the cold.
Prevalence
The UK government estimate of 240?000 people being affected by the condition is based on a survey done in Chicago, which suggests 4.22 cases per 1000 population. Estimates vary greatly, although the condition seems to be found mostly in advanced industrialised countries. The real extent of the problem worldwide is unknown. Under-representation of developing countries could be explained by poor health care and monitoring, as most chronically ill people are cared for in the community setting without proper medical care. Further epidemiological research is needed to clarify exactly how many people are affected and to what extent, to form a basis for health service planning.
James king-holmes/spl
Tilt tests are used to reproduce symptoms of dizziness or loss of consciousness which can help with diagnosis and treatment
What is ME?
ME is not a new illness; the first officially recorded outbreaks go back to 1934. But even now, little is known about the condition.3 It has characteristic features but is highly variable in severity and duration. ME affects all age groups and typically more women than men. About a quarter of patients are either housebound or bedbound.
Symptoms include overwhelming fatigue, which differs from normal tiredness and is made worse by increased activity with a delayed impact. Patients also experience cognitive problems such as poor concentration, difficulty finding words, and problems with their short term memory. Patients often have muscle and joint pain, along with recurrent headaches or migraines. Sleep disturbance and digestive problems, with features of irritable bowel syndrome, are typical. Other symptoms include sensitivity to light and sound and alcohol intolerance.
The exact cause of ME is unknown, though infections such as glandular fever and viral meningitis are identified as possible triggers in 10% of cases. Many of the symptoms suggest dysfunction of the central nervous system. Immune, endocrine, and musculoskeletal abnormalities are also implicated, though much more research is needed to identify the disease process and ultimately find a cure.
Practical steps can be taken to ensure the patient has maximum support on the road to recovery. The report underlines the importance of prompt diagnosis as with early diagnosis and advice, most patients can be expected to make a recovery. A management plan which is mutually agreed with the patient is crucial in treating a chronic illness such as ME, as doing too much can make the condition worse while too much rest can also be unhelpful.
The current lack of medical understanding of the condition and existing controversy are not an "excuse for inaction," as the chief medical officers report stated. A cure may not exist at present, but the basic principles of listening and working with the patient are vital if a recovery programme is to have any chance of success.
Why the controversy?
Dispute over the condition and to what extent it is physical or psychological has caused huge divisions between health professionals and patients over the past two decades. Few disorders have ever been surrounded by similar amounts of disbelief and prejudice.
The controversy emerged partly because of the lack of certainties about the illness. In addition to little serious research being available on either cause or effective treatments, an important contributory factor has been the lack of a reliable diagnostic test. Current diagnosis of ME relies on the exclusion of other conditions and identifying the characteristic pattern of symptoms that distinguishes the condition. It is an unsatisfactory process for both doctor and patient and can lead, in the worst instances, to a breakdown in the relationship. Many patients have been disbelieved by doctors who are, in turn, unable to find any explanation through routine tests for the bizarre symptoms described by their patients. This can lead to problems for those affected by the condition in dealing with employers, benefits agencies, and occasionally even family and friends. In a survey in 2001, almost two thirds of patients with ME reported not having received any advice on managing the condition from their doctor and 33% had to wait more than 18 months to receive a diagnosis.2
Medical training and ME
With an estimated prevalence of 0.2-0.4% (240?000 cases in the United Kingdom alone), most general practitioners can expect to come across patients with ME, yet it is still not consistently included in medical training. Set this against the fact that the chief medical officers report states that most patients can be dealt with in the primary care sector and the strain begins to show. This is compounded by the lack of specialist treatment, which means both the doctor and patient often feel they have nowhere to turn to.
The General Medical Council, which is responsible for undergraduate curriculums in the United Kingdom, explained that the decision to include specific subjects lies with medical schools, which to a large extent develop their own detailed curriculums. As a result, although some lecturers choose to touch on ME, it is not included as a matter of course. This is the unmapped territory on which charities such as Action for ME continue to build their campaigning for the development of better services and research and bridging some of the wide chasms that have developed over the years.
The future of ME
The chief medical officers report identified an urgent need for more research and resulted in a government referral to the UK Medical Research Council to develop a strategy for advancing biomedical and health services research on ME.
The Medical Research Council set up a research advisory group early last year and published a draft research strategy in December 2002. The draft strategy builds on the chief medical officers report and gives guidance on how research into ME should be developed, while highlighting priority areas such as finding more effective treatments. Following final publication later this spring the major concern is whether the government will allocate research funds to ensure the research strategy is put into practice.
Samantha Radford, Action for ME
Competing interests: SR is employed by Action for ME.
Please contact Action for ME (tel 01749 670799) for a general practitioners quick reference guide to ME based on the chief medical officers report.
Further information on the Medical Research Council and the draft ME research strategy can be found at www.mrc.ac.uk
studentBMJ 2003;11:1-42 February ISSN 0966-6494
- Department of Health. The Chief Medical Officer’s Working Group Report On CFS/ME. London: DoH, January 2002.
- Action for ME. Severely Neglected: ME in the UK. London: Action for ME, March 2001.
- MacIntyre A. ME. London: Thorsons, 1992.
