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Few disorders in modern medical practice generate such uncertainty and controversy as the enigmatic clinical condition known as chronic fatigue syndrome (CFS). Much of the difficulty surrounds the
dominant reductionist paradigm of medical practice, which
emphasises diagnostic tests, recognised pathophysiology, and
established pharmacological and other physical treatments.
Broader paradigms, incorporating other cultural and psychosocial
perspectives, are crucial for clinicians who treat patients with
this challenging disorder.
Prolonged fatigue is reported by about 25% of all patients presenting
to Australian general practice.1 Such fatigue states
represent a continuum of severity ranging from the mild and transient
symptoms generally attributable to intercurrent infection or minor
mental disorder through to the more rare, severe and prolonged
fatigue disorders. In about 1% of patients attending general
practice, the fatigue state will meet diagnostic criteria for CFS
(Box).
Although most people present to their doctors with characteristic
symptom patterns, current clinical practice relies heavily on
diagnostic tests for accurate recognition of almost all disease
states. Consequently, doctors frequently explain the patient's
suffering in pathophysiological terms based on test results, and
treatments are often provided to "fix the numbers" rather than the
problem identified by the patient. While doctors readily provide
specific treatments that have a firm evidence base, many have little
interest in the kind of medicine that maximises non-specific
therapeutic benefits, such as providing complex or aversive
treatments and encouraging adherence to non-pharmacological
interventions.
This makes it difficult for patients with poorly defined disorders,
or disorders without simple treatment options, to find suitable
care. In addition, the increasing specialisation of medicine
creates problems for those patients whose disorders do not fit within
distinct subspecialty boundaries. Each of these issues contributes
to the current dilemmas in managing people with CFS.
Syndromal diagnoses were once common in clinical medicine and still
persist in situations where disease processes are complex or
obscure, such as systemic lupus erythematosus. Syndromal diagnoses
are common in neurology (eg, migraine and other headache syndromes),
and in psychiatry (eg, major depression), where there is a strong
reliance on patient self-report rather than clinical signs or
laboratory markers. Many clinical specialties identify syndromes
closely related to CFS, but with varied emphasis on a particular
symptom feature, such as musculoskeletal pain in fibromyalgia and
gastrointestinal disturbance in irritable bowel syndrome.
Clinically, CFS has the characteristics of a neuropsychiatric
disorder. Its major symptoms (disturbed perception of fatigue and
pain, sleep disturbance, neurocognitive difficulties and mood
disturbances) suggest a non-localised disturbance of central
nervous system function. However, its pathophysiological basis
remains obscure. A diverse array of aetiologies has been proposed
(including immunological, infective, metabolic, neuroendocrine
and psychiatric hypotheses), but no simple explanatory model has
been supported by well-controlled studies. Indeed, the
heterogeneity within patient groups labelled as having CFS makes it
likely that more than one process is operative.3
Thus, CFS challenges the standard concept of discrete disease
categories linked to specific aetiologies. The practitioner is
confronted with the challenge of explaining the patient's symptoms
without reference to a coherent biomedical model. In these
circumstances, doctors often fall back on outdated notions of
"psychosomatic disease", which patients generally interpret as
"imaginary illness". In the face of medical disinterest or
scepticism, patients are frequently driven to seek simplistic
"alternative" explanations to legitimise their illness
experience, and may be tempted to pursue useless or harmful unproven
therapies.
How can patients and practitioners engage in a more productive
dialogue? To begin with, doctors should be prepared to acknowledge
the limitations of our current state of knowledge. In the absence of a
clear understanding of the underlying pathophysiology, CFS is best
described as an illness rather than a disease.4 Illness is a subjective
state of suffering -- physical, psychological and social -- and can
only be understood and defined with reference to the sick
individual.5 Disability arises when
illness interferes with the individual's ability to function
normally. People with CFS are clearly ill, and are often disabled,
even though an underlying disease process has not yet been
identified. Our goal as medical practitioners is not only to identify
and treat disease, but also to help relieve suffering and disability,
whatever the cause.
Unfortunately, medical conditions for which there are limited
therapeutic approaches are rarely popular territories for
practitioners. Various antiviral, immunoregulatory, metabolic,
and antidepressive drug treatments for CFS have been subjected to
randomised controlled trials, but none has demonstrated definite
efficacy. In disorders associated with broad disturbances of
central nervous system function there is commonly an interplay
between cultural, personal and biomedical factors. Thus, it is not
surprising that cognitive-behavioural approaches have shown
benefit in clinical trials,6 but it is not yet clear how
generally applicable these findings are.
A recent evaluation of patients with chronic fatigue in Hong Kong may
provide an important insight for our "Western" medical
practice.7 For these patients the
notion of having a "medical" versus "psychiatric", or "biomedical"
versus "psychosocial", cause of their illness made little sense.
Their perception was that, while they were clearly unwell, the
potential causes of that suffering could lie across a broad domain of
personal, social or medical factors. If Australian patients and
their doctors could rediscover this basic concept, and could also
accept prolonged fatigue as a legitimate illness experience, there
would be no need for the polarisation of aetiological models (and
political views) that has become characteristic of medical practice
in relation to CFS in the USA and UK. This unnecessary polarisation is
intellectually shallow and harmful to patients.
To build an effective therapeutic alliance, doctors should
endeavour to maximise non-specific treatment effects by adopting an
empathic and non-judgemental style, by displaying acceptance of
their patient's suffering, and by demonstrating a commitment to
continued care. Rejecting the patient's illness experience is
likely to promote feelings of alienation and to perpetuate
ill-health. The cornerstones of good management include providing
information about the illness and its natural history; empirical
treatment of disturbances of mood and sleep which commonly co-occur
in CFS; and encouraging a rehabilitative approach to the illness,
including graded physical activity as well as psychological and
social support.
Andrew R Lloyd
Associate Professor, Inflammation Research Unit
School of Pathology, University of New South Wales
Ian B Hickie
Professor, School of Psychiatry, University of New South Wales
Robert H Loblay
Associate Professor, Department of Clinical Immunology
Royal Prince Alfred Hospital, Sydney
- Hickie I, Hooker AW, Hadzi-Pavlovic D, et al. Fatigue in selected
primary care settings: sociodemographic and psychiatric
correlates. Med J Aust 1996; 164: 585-588.
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Fukuda K, Straus SE, Hickie I, et al. The chronic fatigue syndrome: a
comprehensive approach to its definition and study. Ann Intern
Med 1994; 121: 953-959.
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Hickie I, Lloyd A, Hadzi-Pavlovic D, et al. Can the chronic fatigue
syndrome be defined by distinct clinical features? Psychol
Med 1995; 25: 925-935.
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Jennings D. The confusion between disease and illness in clinical
medicine. Can Med Assoc J 1986; 135: 865-870.
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Cassell EJ. The nature of suffering and the goals of medicine. New
York: Oxford University Press, 1991.
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Wessely S, Hotopf M, Sharpe M. Chronic fatigue and its syndromes.
New York: Oxford University Press, 1998.
-
Lee S, Yu H, Wing YK, et al. Psychiatric morbidity and illness
experience of primary care patients with chronic fatigue in Hong
Kong. Am J Psychiatry 2000; 157: 380-384.
©MJA 2000
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Nicole Phillips, Michael J Oldmeadow and Natalie Krapivensky . SPHERE: A National Depression Project Med J Aust 2002; 176 (4): 193-194. [Letters] <http://www.mja.com.au/public/issues/176_04_180202/phi_hic_letter.html>
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