The condition known as myalgic encephalomyelitis or chronic fatigue syndrome
(ME/CFS) is an illness of unknown aetiology which affects over 150 000 persons in the
UK. Whilst the cause of the condition is the subject of intense medical debate, the
official view is that it is a form of atypical depression or somatisation disorder. This
view is at odds with the views of many sufferers who claim that ME/CFS is a
pathological disease that renders them severely incapacitated. Sufferers' maintain that,
because their condition is regarded as a minor, psychological illness, its' severity is not
recognised. Thus, rather than being granted assistance, their appeals for help are often
met with accusations of malingering or hypochondriasis. This, they argue, results in
significant marginalisation. In short, sufferers' state that they experience bodily change
that is profound and disabling, however, their claims to be `really ill', are ignored.
ME/CFS is one of a number of conditions whose meanings are contested. Other such
conditions include Gulf war syndrome, repetitive strain injury, organophosphate
poisoning, and multiple chemical sensitivity. These conditions are worthy of
sociological study because they `make visible' the way that social definitions of illness
impact on the experience of illness.
The data for this thesis is derived from an empirical study of sufferers' experiences of
ME/CFS. Using both qualitative and quantitative research methods, the study explores
the embodied experience of ME/CFS and the illness careers of sufferers. The findings
of the study are analysed in the light of the sociological literature on `the cultural
expectations surrounding illness', `embodiment' and `the experience of illness'. Whilst
the past literature has either focused on `the cultural expectations surrounding illness' or
`the experience of illness', this thesis brings together the two areas and uncovers the
complex set of relations and pathways that emerge when ideas about illness clash. The
findings have implications for the sociological understanding of the illness experience.
They are particularly relevant because, as the chronically ill population expands, there is
an increasing emphasis on individual responsibility for illness. Thus, whilst contested
illnesses are a blatant example of what happens when sufferers' are held accountable for
being ill, the findings have implications for the experience of all chronic illness.
Date of Award | 2002 |
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Original language | English |
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Awarding Institution | |
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Non - legitimate illness, embodied experience and the moral career: the case of ME/CFS
Collett, T. (Author). 2002
Student thesis: PhD