Appendix I
Medical Discourse: a suitable case for treatment ?
(this review first appeared in Perspectives, the magazine of the ME Association, Autumn 1991)
Chris Richards
There was no vice too small in the 19th century - even the vigorous polka - to be regarded as the cause of consumption for those infected by the tubercle bacillus. In 1881 Austin Flint published, with his co-author Welch, his standard “textbook”’ The Principles and Practice of Medicine* , a book which ran to six editions and dealt at length with the subject of tuberculosis and its causes: hereditary, disposition, unfavourable climate, sedentary indoor life, defective ventilation and “depressing emotions”. Never has a medical discourse become so rapidly outmoded. The following year (1882) Robert Koch* published his epoch-making paper announcing his discovery of the tubercle bacillus, the primary cause of tuberculosis. From that moment, TB, as the new acronym went, became, unarguably, an infectious disease.
Post-viral Fatigue Syndrome, the recent collection of essays edited by Rachel Jenkins and James F Mowbray* with a foreword by Anthony Clare - two psychiatrists and an immunopathologist - is a book which for its apparent advantages is rooted firmly in the Flint and Welch tradition. Post-viral fatigue syndrome is a catch-all phrase which implies a field so open that even the concept of ‘field’ as a distinct research entity disappears. In his foreword Anthony Clare extols the virtues of the “multidisciplinary” approach to this disease, but at no point does he confront the real issues of mulitdisciplinarity, such as the rationale on which certain disciplines have been included, excluded , or why. With a foreword which does not even rationalise its text, it is not surprising to find a subtext which tells an alternative story. Multidisciplinary? Yes ... well ... hardly.
Disciplines
Seven contributors are psychiatrists, a contribution rate nearly 50%
higher than that of any other discipline, including virology, neurology
and neurovirology - in spite of the upfront “post-viral” of the title.
Astoundingly, there is no contribution from epidemiology, although
three contributors from psychiatry describe themselves as workers in
this field. There is only one contributor from infectious diseases in
spite of the long history of epidemics in the literature of M.E., to
which, to give her credit, Rachel Jenkins does give an account. But
what has happened to the distinction between the sick and the able in
Jenkins’s account of hill walking and other physical exercise of this
type? Lost in intellectual webs of “multiaxial diagnostics”, these
editors and most of the contributors dodge the whole issue of
disability.
Direction
Moreover, almost one third of the contributors are from what might
broadly call the behavioural disciplines, namely behavioural therapy,
psychology and psychiatry, a direction in keeping with Rachel Jenkins’s
research record in “abnormal illness behaviour”* . What victims of M.E.
should perhaps be questioning in these very serious circumstances is
whether they are happy or unhappy with the overall description of their
condition as “post-viral fatigue”. Consideration of this issue could
not be more vital since, as it forms the substance of the title of the
book, the term post-viral fatigue will become the dominant message to
be passed on the new generations of researchers in the future, as well
as one which plays a part in the controlling imagery of official
medical discourse on the subject at present.
Bona fide
I am not knocking this area as a bona fide discipline or research
field. What I am saying is that emphasis on it will result in a failure
to stimulate research in the key areas needed. Looking in Jenkins and
Mowbray for a guide to a new project the potential researcher has to
plough through to page 433, to the section entitled “Directions of
Future Research”, to learn that, to date, almost no systematic
observation of M.E. patients in the form of regular monitoring and data
collection has ever taken place. James Mowbray, Chair of the ME
Association’s Scientific and Medical Advisory panel, reveals the real
truth about the state of research in M.E. when he cites the field of
natural history as one of the areas requiring prospective study. This
is a point to be born in mind by those who continue to be refused
mobility and/or other attendance allowances .
The historical shift in the usage of the term M.E. to post-viral fatigue syndrome in the titles of medical papers and books is also worth a moment’s speculation. The main shift took place in 1984 in the Lancet* followed by another in the Journal of Infection the following year* . The first paper is an account of the findings in one patient with “a” postviral fatigue syndrome while the second is a study of 50 patients with “the” postviral fatigue syndrome. Both papers are always included in bibliographies on M.E. Why? What is the pathological justification for “a ”postviral fatigue syndrome being considered in the same body of work as “the” postviral fatigue syndrome? Melvin Ramsay pointed to the importance of making distinctions between these terms. Quite right. The only cultural reference point for “fatigue” with any meaning is buried in the 1985 paper. These researchers define the nature of “fatigue” by introducing an equivalent. “The nearest clinical equivalent,” they say, “is the exhaustion reported by middle aged males with multiple sclerosis affecting the spinal cord.” Now this approach is in the language which most people, both lay and professional, will understand, so it is a mystery to me why its authors should have chosen to use the phrase “postviral fatigue” for the title of their paper. Perhaps they felt that, as the preferred term of the patient, M.E. was declasse. Academy tactics. Keeping the perimeter fence around fields of knowledge. In the context of “fields of knowledge”, therefore, I have a short suggested reading list for all researchers in the field of the much abused “disease of a thousand names” . It consists of the legislation which took place last century in public health which both campaigners and works by Dickens and Elizabeth Gaskell especially helped to provoke by increasing public awareness of infectious disease and epidemics. These writers were not waylaid by the vagaries of psychiatry, because, as social historians, they knew about, and documented, the relationship between poverty, education and public health. They were also believers in social justice. But as Dr Betty Dowsett commented in the last issue of Perspectives “those who do not study history will indeed be forced to repeat it”* .
* Flint, Austin and Welch, William H (1881) The Principles and Practice of Medicine London, J & A Churchill. 6th edition (1886)
* See Victor Robinson (1932) Robert Koch, New York, Medical Life Press.
* (eds) Jenkins, R & Mowbray, J F (1991) Post-viral Fatigue Syndrome, Chichester, John Wiley & Sons.
* Jenkins, R, Aggett, P and Newall B (1988) “Teaching medical students and registrars: a multidisciplinary team approach to the management of chronic pain and abnormal illness behaviour”. Association of University Teachers of Psychiatry Newsletter, London.
* Arnold, D I, Bore, P J, Radda G K, Styles, P & Taylor, D J (1984) “Excessive intracellular acidosis of skeletal muscle on exercise in a patient with a post viral fatigue syndorme”. The Lancet, 1: 1367-1369.
* Behan, P O, Behan W M H & Bell, E J (1985) “The postviral fatigue syndorme - an analysis of the findings in 50 cases”. Journal of Infection, 10:211-222.
* See Bell, David (1991) CFIDS: The Disease of a Thousand Names, New York, Pollard Publications
* See Perspectives: The Magazine of the ME Association (Summer 1991), p. 24.
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