TASA Conference 2001 Sydney University CFS/Illness Construction
NT Millen
The Sociological Association of Australia Conference
Health Sociology Section, Sydney University
Dec 13-16 2001
A sociological study of Chronic Fatigue Syndrome and
the micro-politics of change in illness construction
Neville Millen
Senior Lecturer in Sociology
Faculty of Arts
Australian Centre for the study of Quality of Life
Deakin University
Victoria, Australia
‘Explanation’ was the nomological process of the natural sciences, involving
prediction from laws and initial conditions. ‘Understanding’ involved a process of
comprehending the parts through an appreciation of the whole…we explain nature,
we understand psychic life’
[Surgeon Miles Little (1995:154) commenting on Wilhelm Dilthey, the pioneer of
modern secular hermeneutics]
Introduction
Chronic fatigue syndrome calls out for explanation using all the diagnostic powers of modern
medicine and its medical scientific technology. Yet it remains baffling to medical science,
despite thousands of medical papers explaining probes and procedures ranging across every
human bodily system. It is a syndrome that also requires full understanding or ‘Verstehen’ as to
its emergence with renewed vigour in modern man. This paper argues that medicine, while it
has maximised its quest for scientific solutions to the disease has, in so doing, neglected the
essential communication processes essential for a fuller understanding of the psychic lives of
the sufferers of chronic fatigue syndrome.
In common with the hermeneutic tradition of Dilthey (Makkreel 1992) and building on his
requirements to explore the deep meanings people attach to their lives and their
communications with others, medical sociologists have sought to understand the ‘illness
experience’ of sick people through their illness narratives, both spoken and unspoken (Hughes
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NT Millen
2000:16). To recognise these narratives as a guide to better human science of understanding,
the doctor- patient relationship is seen as the critical locus of analysis, for it is here that there is
a transfer of more than language, there is a transfer of hope, trust, and above all identity with
its full bodily integrity and meaning (Toombs 1992 in Little 1995).
For sociologists, bodies speak as well as their incumbents, and modern medicine has to a large
extent spurned illness narratives and consigned them to the realm of ‘quackery’; unworthy of
detailed analysis. Doctors in dealing with ‘ anomalous’ medical conditions have lost patience
with bodies and their incumbents and turned away from the illness narratives. This is the case
with Chronic fatigue Syndrome and its multitude of sufferers world- wide. What we find in place
of co-operation between doctors and patients for explanation and understanding of this
syndrome is extreme tension, evolved from socially acquired mutual mistrust and hostility.
The anomalous nature of chronic fatigue syndrome
Chronic fatigue syndrome is a Chimera-like medical anomaly, a variant illness entity that like
the mythical creature, the Chimera, is made up of a mysterious combination of parts which defy
not only a clear description, but more exacting calculations as to how the complex illness is
created. A review of the breadth of the medical and clinical literature over the past decade
alone reveals a staggering quest for explanation of the strange creature that is Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)(Jason et al 1999; Jason et al 2000.
Komaroff 2000)
Currently the two major medical explanations of the etiology of ME/CFS are pathologies of the central
nervous system and immune system dysregulation (McCully et al 1996; Komaroff 2000).
Three psychiatric models of the causes of ME/CFS have been advanced aggressively over the past
decade - the depression model, the somatization model and the stress model (Farrar et al 1995).
Research suggests that CFS results from somatization of psychological symptoms (Lipowski 1988;
Wessely et al 1998). The shift towards favour of psychiatric models for ME/CFS is an indication that
biomedicine has lost confidence in finding a purely biological agent of disease causation for ME/CFS
and has given over the ‘troublesome’ medical anomaly to the psychiatrists to pursue.
Alternatively, ME/CFS can be seen as a social construction similar to the forms of neurasthenia
of the late 19th century (Abbey and Garfinkel 1991), hypoglycaemia in the 1960s and 1970s
(Ware 1992) or ‘total allergy syndrome’ of the 1980s (Stewart 1987). In these terms, rather than
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NT Millen
a new illness, Ware (1992) argues that the configuration of symptoms of CFS has been
constructed and reconstructed into new forms, identified and then discussed at length in new
terms in popular and professional discourse over time. Sociologists of health and illness and
sociology of the body (Foucault 1978; Shilling 1993;Turner 1995,1996) go a step further and
argue in essence that the medical and lay experts have become embattled for control of the
definitions, practices and meanings associated with medicine (read ME/CFS). This tense
political discourse over who controls the symbolic ‘ill body’ and the ‘well’ body is the great battle
for future authority over medical practice between the medical practitioners or non-medical and
lay experts (including illness sufferers).
The changing nature of modern medicine: from pathogenesis to manifestos
for healthy living
Medicine has adapted to change over the past century and has emerged from a science that
concentrated on the naming of body parts (anatomy) and bodily functions (physiology, in the
quest for a precise codification on the origins of disease (pathogenesis), to one where health
maintenance, rather than disease and its elimination, has gradually become the focus of
medical organization and intervention. (Atkinson 1988; Armstrong 1987;Gabe et al 1994) The
contemporary physician is as likely to ‘dispense’ healthy information or ‘ prescribe ‘ behavioural
change, as he or she is to treat one’s condition or offer the instant solution of ‘magic bullets’.
Biopsychosocial medicine, therefore, involves the medicalisation of lifestyle, consumption and
social space and it does so through its various manifestos for healthy living (Bunton et al 1995)
The medical practitioner is now empowered as expert in assessing and dispensing advice to
patients in strategies for the avoidance of potential disease due to lifestyle risks. The shift to the
role of health-care advisor in modern medical practice has also placed obligations on the
healthcare- consuming public to be more vigilant and to carry out personal health surveillance
of one’s own body. It has become equally a moral proscription in post-modern society to
maximise personal wellness in a risk- laden social world, to the extent that smoking especially
in enclosed public places, eating too much fat or being too lean and engaging in risky lifestyle
behaviours such as drug abuse, unprotected sex, drink driving, and other multifarious actions
health-wise are seen as anti- social and worthy of public condemnation.
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It is not a large lateral shift to recognise that in a post-modern society people who appear to
suffer long term with illnesses that are not recognised by medical experts, will find it hard to
justify their suffering as legitimate in the eyes of a public socialised to valorise medical experts
and their opinions. In the post-modern world there is no room for a citizen to take too much
time in working cooperatively with medical help to regain a status of ‘wellness’, a fact of life
which sufferers of ME/CFS in particular can testify to because they are universally the
collective victims of public and professional stigma, for failing to get well quickly and often
enough.
Chronic fatigue syndrome: a challenge to the power of the medical gaze
The study of ME/CFS is a study of a history of constant challenges to what passes for ‘ normal’
science in medicine over almost fifty years. In many respects CFS/ ME remains a mystery
disease that has defied a plethora of intense medical research investigations. The search for a
cure to ME/CFS has encouraged disparate methodologies within biomedicine (Jason et al
2000:17-32). The inability to find a specific aetiology has opened further investigations through
psychiatry into the psychic health of sufferers and the allied use of clinical and cognitive
psychology, to plan regimes of rehabilitative care for long-term sufferers of ME/CFS.
When bodies become the vessels harbouring a disease that fails to show up in modern
medical tests or illness consistently remains elusive to medical examination, the sufferers often
find themselves being directed to take on some treatment regime designed to improve their
psychological attitudes to the illness experience, such as through Cognitive Behaviour
Treatment (CBT) for the treatment of CFS/ ME patients who have been disabled long term
(Sharpe 1998). The inference is that a change in the emotional wellbeing of the patients will
come from a disciplined program of gradual physical exercise. Foucault (1976) would say that
the medical experts of the State are educating the ‘sick’ individuals, in order to get them to be
more involved in their own medical surveillance.
(Turner 1995:9) argues that the shift to rational medical care of critical illness in the mid
twentieth century took sick people out of their homes and treated them more in hospital sites.
With this shift of treatment the attention paid to the distinctive accounts of patient’s conditions
and their essential personal narratives about their illness experiences were lost to a large
extent. (Hunter 1991; Hughes 2000:16) In a similar vein, Nettleton (1995) argues that people
are more than bodies and experience life on three levels-somatic, psychic and social and total
health needs to take consideration of the interaction between the three.
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ME/CFS patients have complained consistently that medical practitioners are dominated by the
‘doctrine of specific aetiology of the disease of ME/CFS which in turn directs the gaze of the
medical expert way from their specific illness experiences, which is in most cases, at treatment
stage, is gradually neglected because illness symptoms do not conform to the codified rational
explanation of the disease since it falls into a ‘ mysterious ‘ or un-substantiated disease
category. Sufferers are then reclassified as ‘ difficult’ or ‘anomalous’ cases and then passed to
the medical domain of imagined illnesses, psychiatry. Under the psychiatric label the medical
gaze shifts and the patient is seen to be suffering from a somatoform condition or the
experience of an illness as a consequence of an underlying depressive illness or other
‘masked’ causative agents that have impacted negatively on the psychic health of the patient.
Micro-politics of the CFS clinic
In a recent article, Banks & Prior (2001:11-23) examined the micro politics of a CFS clinic in the
UK and found an ideological contest between 114 CFS patients and the medical staff in
negotiating medical diagnoses of CFS so that these diagnoses remained in the realm of soma
rather than psyche. Through subtle negotiation with patients, physicians at the clinic were able
to gain cooperation in translating the physical treatment to the psychic realm. This was done by
introducing the concept of ‘ brain chemistry ‘ causations for CFS, casting it as soma and getting
patients to take medications designed to alleviate mood disorders; namely depression and
anxiety.
The Banks and Prior article (2001) emphasises the key sociological theory of illness as being a
socially constructed phenomenon depending on the differentials of social power and status in
any illness negotiations between lay experts and patients and their physicians. Clearly here the
medical staff of the clinic read the bodies of the ME /CFS patients with more care and detail
and came to a negotiated regime of treatment in each case which gained acceptance because
it changed the view of the patient to the view of the physician-in many cases patients becoming
willing to follow the diagnosis of ‘ more than physical’ causation of their illness, such as
depression being at the core of the CFS illness.
The social construction of illness
This process of negotiation of illness and medical investigation works both way such as the role
played by the lay public in the construction of bodily pathology, for example in Willis’s (1986)
and Arksey’s work (1998) on Repetitive Strain Injury, Epstein’s (1996) study of AIDS,
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Alzheimer's Disease (Fox 1989), severe back pain (Deyo 1993) and paradigm shifts on
interpersonal cognition (De la Haye 1991). Sociologists of health and illness are but only a few
social scientists who focus on the social and political process of disease states in a state of ‘
transition’ and the political battles that are waged by lay experts in the quest for legitimation
(that is diseases or illnesses that once were not accepted as real by the medical profession and
the wider community but have moved towards greater acceptance and respectability- such as
Multiple Sclerosis, which was once called hysterical paralysis).
In the case of ME/ CFS we see most clearly a titanic battle between powerful sufferer/patientsupport groups across the Westernised world, locked into a sort of crusade against the medical
experts, in a quest for an ideological change in the way the medical profession should see their
bodies as legitimately physically unwell and their suffering as a legitimate bodily experience of
a recognised illness.
The quest for legitimacy of chronic fatigue syndrome by its sufferers
The medical scientific community remains fragmented in its approach to ME/CFS. This has a
direct impact on consumers. ME/CFS sufferers across many continents express illness
narratives that express frustration with medical science and practice that is on the whole
unsympathetic to their anomalous medical condition. Most tell stories of long periods of
undefined, but serious unwellness, compounded by a loss of employment, of adverse social
consequences accompanying the search for a diagnosis. Many of them speak of their fears
that they had cancer or were going insane. Most describe the overall experience as one that
has profoundly affected their lives.
However, for some people a completely new identity will emerge, built around the political
project of having the illness recognised. Such an identity as political activist usually comes
about when the CFS sufferer becomes aware that his/her experience is not unique and that
much of the negative experience is due to the poor standing of ME/CFS in the medical
community.
I have commented elsewhere ( Millen et al 1999) that self-help and activist consumer groups
have begun to give a voice to people with chronic illnesses and disability in a variety of settings
(Zola 1991). Groups of CFS sufferers are some of the most recent to join these ranks. These
groups provide a forum where people (those with the illness and those who care for them, or
believe in their quest) have the opportunity to share and extend their expertise about managing
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the illness. Groups become politically active when they publicly voice their dissatisfaction with
medical and other health and community services. Although the primary focus of such groups
may be support for one another, many have moved into trying to influence the community and
professional understanding of their problems. In Australia, New Zealand, the United Kingdom
and the United States, CFS self help group, under a variety of names have adopted this
approach.
Political strategies adopted by such groups can be very sophisticated. Fundraising may be
undertaken to encourage research into the condition as well as sponsoring scientific
conferences. Additionally groups may “adopt” sympathetic medical practitioners and thus
further their careers, by providing them with research money, as well as the providing the
research population for analyses. Such groups also establish relationships with
pharmaceutical companies, to encourage development and trials of medications. All these
activities influence the medical agenda. At the same time, members of such groups will seek
opportunities to lobby politicians and health bureaucrats.
Current issues around which activism of CFS patients are centred
In the most recent five years concerns by ME/CFS patient support and political pressure
groups have centred on three key issues, namely;
o the name change and reclassification of ME/CFS (UK) and CFIDS(USA) to CFS and
the possible change back internationally to a new generic name ( CNDS- Chronic
Neuroendocrine immune Dysfunction Syndrome)( Donna Dean, leader of the CFS
name change working group- final version, 24 Oct 2001) and all this entails in the
effects on clinical diagnosis and treatment. This new name is not fully supported by
ME/CFS support groups in UK and USA because it concentrates on the abnormal
findings in the hypothalamic-pituitary axes of CFS patients against healthy control
subjects ( Demitrack et al 1991,Komaroff 2000). However the axis abnormality and an
associated reduced hypothalamic production of corticotropin releasing hormone, is the
opposite of what is seen in patients hospitalised for major melancholic depression- a
finding which places CFS patients in the realm of somatic (physical) disorder and in
contrast to the pressing claims of psychiatrists of CFS being a first order depressive
illness( Cleare et al 1995).
TASA Conference 2001 Sydney University CFS/Illness Construction
o
NT Millen
the shifting of the classification of ME/CFS on the WHO International Classification of
Diseases (ICD-10)(1992), from present inclusion under the somatic diseases of the
nervous system (G93.3) to mental and behavioural disorders ( F48.0)(selections from
ME- leaders website ). The view is sustained that this shift has been provoked by
several prominent psychiatric scholars allied to a dominant school of thought in the UK
( Wessely 1995, Wessely et al 1998) and followed in Australia ( Hickie et al 1996) ;
o
the growing influence of an alliance between psychiatric views on CFS as a
somatoform disorder and the need for graded exercise through a regime of Cognitive
Behaviour Therapy (CBT) (Sharpe et al 1997; Sharpe 1998).
These are the main contests for legitimation of ME/CFS facing the patient/ sufferer groups at
present in their quest for better recognition across the domain of western biomedicine. Most
chronic fatigue support groups across the world want ME back in the illness categorization
rather than CFS since the change to CFS under the Holmes et al (1998) CDC definition and the
clinical diagnostic changes in Fukuda et al (1994), have effectively diminished the legitimacy
and belief in the severity of the illness among physicians and allowed the psychiatrists to
appropriate the condition to their own realm of influence under which they have extracted the
physical factors and applied these to their own findings and put pressure on governments to
apply the psychiatric labels in order to reduce work claims for illness compensations.
In adopting this activist role, ME/CFS sufferers, through their international support groups, have
seized on the anomalous position of CFS in current bio-medical science to exercise a powerful
collective political influence to gain legitimation of ME/CFS as a somatic illness experience in a
wider and more meaningful context. The level of activism has been raised over the past decade
to counter the growing medical discourses that in effect ‘ blame the ME/CFS victims’ for their
own demise, in particular the aggressive push of the psychiatric models. This paper has sought
to present the view that ME/CFS has another reality; as the intellectual site of a battle for
control over the very authority structures of modern medicine and the importance of human
bodies as sites of meaningful social expression and social change.
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* Draft only Not to be quoted with permission of the presenting author