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Epidemiology of chronic fatigue syndrome and self reported myalgic encephalomyelitis in 5-15 year olds: cross sectional study

BMJ 2003; 327 doi: https://doi.org/10.1136/bmj.327.7416.654 (Published 18 September 2003) Cite this as: BMJ 2003;327:654

The social myth of mind over matter

My daughter has suffered (that being the operative word) with a
devastating illness for three years, diagnosed as CFS/ME for two. Her
greatest problem is not the 'fatigue' (although this is a demoralising
feature of her illness), it's the constant excrutiating pain, for which
she has little to no relief. Despite this, and her present, possibly
future, loss of outside social life, educational aspirations and pleasures
previously taken for granted, she stays reasonably positive, realistic,
rational, and maintains her sense of humour: not the best candidate for
the hysterical stereotype which appears to abound in much of the
psychiatry-based literature around this illness.

My daughter has been heavily, speculatively psycho-analysed, both in
a generic sense by psychiatrists that have never met her, and directly by
certain professionals with no specialist knowledge to do such a thing.
Discursive categories have been assigned to her, her illness and her
psyche, categories which are themselves products of the social world, not
objective observation(despite their claims) and far too often using flawed
evidence that is lacking in clarity, coherence and empirical adequacy,
leading to the already rather vague comments made in the CMO's Working
Party report, regarding patient's wishes being respected and their views
listened to, sounding very hollow indeed.

The move to psychologise a very serious internationally recognised
organic illness by what appears to be a very determined cohort of
psychiatrists and related colleagues is very worrying indeed, and has had
extremely adverse material, social, and financial effects upon the lives
of people already severely compromised by a serious illness and
disability.

It is, from a sociological perspective, quite pertinent to apply a
theory of the social construction of disability to the practice of
psychiatry in the field of ME and other 'Chronic Fatigue' syndromes. A key
feature of of this is the phenomenon of the social myth of control, or
'mind over matter', which has been documented comprehensively by social
scientists and cultural theorists. In the words of one of these, Susan
Wendell, herself an ME sufferer: "When unproveable theories are generated
to explain how someone could have avoided becoming ill... when people with
disabilites are seen as having their psychological, moral and spiritual
failures written upon their bodies, the myth of control is at work."
(1996: 94) Such social myths have a historical basis, related to the
influence of Freud and psychoanalysis, for example.

This is not to deny the possibilities of psychosomatic or even
imagined illnesses per se. However, such explanations are often made by
default, without adequate investigation or suitable acknowledgement of
patients' own knowledge about their bodies. Currently, far too many in the
medical profession are failing the people they are supposed to be
providing help to. An urgent reappraisal of the social myth of control is
necessary, and the discourses of those working under it critically
analysed, otherwise people will continue to suffer profoundly and
unnecessarily, an absolutely intolerable state of affairs.

Competing interests:  
None declared

Competing interests: No competing interests

26 September 2003
Angela P. Kennedy
Carer of young woman with ME, Social Science Lecturer and Researcher
Open University