Chronic Fatigue Syndrome and an Illness-Focused Approach to Care: Controversy, Morality, and Paradox

Article Summary by Michael Sharpe and Monica Greco

THIS IS A PREVIEW; the article will appear in the June issue. Please send your commentaries and e-letters based on the printed article. Link coming.

In this piece, we explore the controversy concerning the treatment of the illness called Chronic Fatigue Syndrome or CFS, which is sometimes also called ME (Myalgic Encephalomyelitis). Specifically we ask why are the apparently benign psychological and behavioural treatments for fatigue—cognitive behaviour therapy (CBT) and graded exercise therapy (GET)—so very controversial.

We suggest that it is helpful to consider this controversy in terms of the modern medical concepts of illness and disease: illness refers to a person’s subjective experience of symptoms; disease refers to objective bodily pathology. Chronic disabling fatigue is a common symptom of many illnesses. For some of these illnesses like CFS there is no generally accepted associated disease. For other illness like cancer-related fatigue, there is. In both cases disease-focussed treatment is commonly ineffective in relieving the fatigue, whereas, illness focussed treatments such as CBT and GET, can be. However, whilst such treatments are readily accepted by patients with cancer-related fatigue, they may be strongly rejected by people with CFS; why is this?

To answer this question we consider more closely the assumptions implicit in the modern distinction between illness and disease. By tracing the genealogy of the distinction to the emergence of modern scientific materialism, we can see that the concepts of disease and illness stand in a hierarchical relationship, such that illness needs to be corroborated by associated disease for its reality to be taken seriously. Consequently, patients who have an ‘illnesses-without-disease’ like CFS, find themselves in a paradoxical and morally ambiguous predicament. Paradoxical because whilst their experience of illness may be severe, the lack of disease may lead to it being regarded as trivial. Morally ambiguous because whist the person with CFS needs care, their illness may be regarded as a failure of will, rather than as a genuine affliction.

The rejection of illness-focussed treatments by some people with CFS, we suggest therefore, follows from the perception that such treatments are seen to underscore the label of ‘illness-without-disease’ with all the negative consequences that follow. By contrast, they do little to undermine the more secure ‘illness-with-disease’ status of the person whose fatigue is associated with cancer.

To resolve the controversy we set out to address, we propose that in the short term the paradox that people with CFS face must be clearly acknowledged. In the longer term, we proposed that there is need to transform the social and moral connotations of illnesses-without-disease by cultivating alternative and more inclusive ways of conceptualising human suffering.

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