Myalgic encephalomyelitis and the medical encounter

In the history of twentieth century western medicine several 'syndromes' have been denied the legitimate status of 'organic disease'. Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are examples of such syndromes, in that their status within biomedicine as 'real, organic' diseases is still a matter of controversy. These 'non-diseases' or 'illegitimate illnesses' are usually defined in terms of symptoms, with few consistent signs, and scientists and doctors have failed to agree on aetiology and pathogenesis. There are no obvious visible abnormalities present in sufferers, and ME cannot be diagnosed by standard medical tests. This paper explores the consequences of uncertainty and controversy for those who suffer from ME. It is based primarily on a series of ten life history interviews with sufferers of ME. These accounts of illness careers focus on the difficulties in obtaining a correct diagnosis and achieving legitimate sick role status, and on problems of miscommunication, dismissal and disbelief. As a result, respondents changed their attitudes towards either particular doctors, or the medical profession. These altered perceptions are discussed in the context of the emergence of critical lay perspectives, and a growing public ambivalence towards biomedicine.