PATRICIA JEAN DE WOLFE
'I'M REALLY ILL, I'VE GOT M.E'
BODILY DISORDER AND THE QUEST FOR DISEASE
THESIS SUBMITTBD FOR THE DEGREE OF DOCTOR OF PHILOSOPHY IN THE
UNIVERSITY OF LONDON
DEPARTMENT OF SOCIOLOGY
GOLDSMITHS COLLEGE
MARCH 1999
ABSTRACT
"I'm REALLY ILL, I'VE GOT M.E": BODILY DISORDER AND THB QUEST FOR DISEASE
This thesis explores the terms of the debate surrounding the nature of myalgic encephalomyelitis M.E.), a condition characterised by profound exhaustion, muscle weakness, and a host of other symptoms, which has generated much controversy since coming to prominence in the late 19805.
Crucially, there 1s no diagnostic test for the purported disease. However, those claiming to be its victims are convinced that they suffer from an incapacitating organic disorder not of their making. warranting social support and medical help. Their claims, heavily dependent on their reports of experienced symptoms, have been contested by critics who have diversely construed M.E. as a psychiatric illness and/or as an effect of personality or behaviour.
Using knowledge derived from participation in an M.E. support group, and analysis of material published in the journals of M.E. charities and in the medical and popular press, the thesis examines what is involved, epistemologically, socially, and morally, in the claims to 'real disease' made by people with M. E., as well as in the counterarguments of sceptics. It proposes a conceptualisation of disease, fundamental to understandings of bodily disorder, and a precondition for (although not a guarantee of) the exculpation of the sufferer. The thesis examines a range of constructions of sick people as guilty of their illness; shows how these stigmatising constructions pervade discourses on M.E.; and evaluates the arguments by means of which people with M.E. attempt to establish their bona fides. The thesis also addresses the question of whether people with M.E. might have pursued aims other than inclusion in a biomedical category, and points to the difficulties of evolving alternative strategies for legitimating bodily disorder.