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Abstract

Objective: The aim of this paper is to outline the opportunities and dangers the chronic fatigue syndrome (CFS) issue presents to Australian psychiatry.

Method: The scientific literature of the last 50 years on CFS in adults was reviewed and samples of recent media portrayals of CFS in the UK and Australia were collected. The author has worked in both the UK and Australia managing adult CFS patients in specialist outpatient consultation–liaison (C–L) psychiatry settings.

Results: Chronic fatigue syndrome has been at the heart of an acrimonious debate in the UK, both within the medical profession and in the wider community. UK psychiatry has been drawn into the debate, at times being the target of strong and potentially damaging criticism, yet UK psychiatry, especially the C–L subspecialty, has played a crucial role in clarifying appropriate research questions and in devising management strategies. The issue has served to enhance and broaden psychiatry's perceived research and clinical role at the important medicine–psychiatry interface in that country.

Conclusions: Handled properly, the CFS issue offers Australian psychiatry, especially C–L psychiatry, an opportunity to make a useful contribution to patient care in a clinically difficult and contentious area, while at the same time serving to help broaden psychiatry's scope in the Australian medical landscape.

Keywords

Australian psychiatry chronic fatigue syndrome consultation–liaison

Chronic fatigue syndrome (CFS) is the internationally accepted title for a disease concept which consists of chronic, medically unexplained, clinically significant physical and mental fatigue. Over the last 50 years many names have been devised for this disease concept which, in a number of cases, have presumed unproven pathophysiological aetiologies. Most prominent among these terms is myalgic encephalomyelitis (ME) which was coined in the UK in the 1950s as a result of the famous Royal Free Hospital outbreak [1]. The term CFS was devised by the Centre for Disease Control (CDC) in the USA in 1988 as a reaction to consumer pressure [2] and later modified in 1994 to what is currently the most widely used definition [3] (see Table 1). The re-naming of the disease concept as CFS has proved to be an effective conceptual rallying point for the medical profession internationally.

Table 1.

The 1994 revised Center for Disease Control case definition for chronic fatigue syndrome [3]

Chronic fatigue syndrome has remained a uniquely controversial medical entity with sufferer-practitioners, patient self-help groups, celebrities and alternative or complementary medicine advocates all playing prominent roles in the unfolding debate in many developed countries.

In the UK, as in North America, the CFS debate has become highly acrimonious, both in the public arena and at times within the medical profession.

In the UK, as we shall see, there have been significant governmental health policy responses to the CFS issue and widely publicised, cross-specialty medical consensus statements, largely thanks to the efforts of UK psychiatrists, in particular UK C–L psychiatry researchers. The psychiatric profession in the UK has been subject to vociferous criticism from some quarters for its trouble, but, nevertheless, UK psychiatrists have played an important role as leaders in research and in advocating for the provision of rehabilitation programs for CFS sufferers.

There is evidence that psychiatrists in the USA, on the other hand, have largely ignored or avoided the issue of chronic fatigue as a disease entity in recent times, although it has been widely treated by American physicians in family practice settings [4].

The UK psychiatric response to the CFS issue, with its vanguard of C–L psychiatry researchers, arguably represents the best international model for the current Australian situation. A review of the recent history of UK psychiatry's engagement in the CFS debate demonstrates that ultimately the opportunities of such an involvement outweigh the risks.

Psychiatry's role in the chronic fatigue syndrome/myalgic encephalomyelitis controversy in the UK

The 1950s Royal Free Hospital epidemic in London of unexplained malaise affecting primarily hospital staff led to the term benign myalgic encephalomyelitis being introduced by a Lancet editorial in reference to ‘the alarming outbreak at the Royal Free Hospital’ [1]. The epidemic cases were characterised by unexplained neurological symptoms with some associated fatigue and malaise. Some cases were reported to have become chronically disabled [5]. It was argued that the word ‘benign’ should be dropped to reflect the severity of the disorder [5], although the original intention had been to indicate an apparent lack of mortality.

Many hypotheses for the Royal Free outbreak and ME more generally were proposed over the following two decades in the UK. Most hypotheses involved putative infectious pathogens akin to poliomyelitis, a prevalent infectious illness at the time. One of the most controversial hypotheses was that proposed by two UK psychiatrists, McEvedy and Beard [6], who published a radical reconsideration of the Royal Free epidemic in a 1970 article in the British Medical Journal. In the article they questioned the prevailing infectious pathogen theories and asserted that the symptoms could be explained as ‘mass hysteria on the part of the patients’ with an additional factor of ‘altered medical perceptions of the community’ (concern about the spread of poliomyelitis) [6].

McEvedy and Beard's article served to further polarise the medical and wider community's attitude to ME in the 1970s and cast the discipline of psychiatry, in the eyes of many in the UK, at the ‘all in the mind’, as opposed to the ‘real disease’, pole.

In the 1980s ME in the UK came to be seen less as a medical oddity and more as an underrecognised sporadic illness with the core feature of unexplained chronic fatigue. ME also began to be seen increasingly as a disease with virological and immunological associations, and therefore an illness that warranted expert or specialist medical intervention. Along the way, members of the UK public who believe they suffered from ME became opposed to it being referred to as anything else and challenged the medical profession's right to dictate the name of the illness.

By 1988 concern about the apparent rise of ME as a health problem in the UK became intense and widespread. The UK medical profession was seen by many as unable or unwilling to address the issue effectively. A bill was presented to the UK parliament entitled ‘Myalgic encephalomyelitis’ [7]. In his speech to the house prior to presenting the bill, the parliamentarian Jimmy Hood claimed that ‘it is widely acknowledged that many incidences of suicide result from the refusal of doctors to accept sufferers are ill’ [7].

In 1990 a UK C–L psychiatrist, Simon Wessely, published his article ‘Old wine in new bottles: neurasthenia and “ME”’ in the journal Psychological Medicine [8]. In it he drew correlations between the turn-of-the-century rise of neurasthenia and the modern rise of CFS/ME. He highlighted how neurasthenia was initially seen as a physical illness, but became a less popular diagnosis among both physicians and patients as it developed more psychological overtones and began to be recognised in all social classes. Rather than being portrayed as a newly recognised disease, CFS/ME was portrayed as an old, discredited one being reinvented. This article served to fan the flames of controversy in the UK, much as McEvedy and Beard's had two decades earlier, and again served to characterise psychiatrists in the UK as belonging at the psychosocial aetiology pole of the debate.

UK media coverage of the CFS/ME issue in the 1990s generally tended toward sensationalism, reporting especially severe or chronic cases and depicting the health system as either uncaring or powerless to help. Declarations by celebrities that they are affected by CFS invariably generates media interest (see, for example [9]). In the early 1990s suggestions in the media that psychiatry might have a role to play in the management of CFS/ME unleashed a backlash of angry and critical public comment and demands for public retractions [10]. Debate within the medical profession about the CFS/ME issue has generally been portrayed by the UK media as being not about the validity and utility of the disease concept, but about whether patients who report symptoms of CFS/ME are genuinely suffering.

The 1990s in the UK also saw the rise to prominence of CFS/ME self-help groups. These groups have attempted to establish what they see as CFS/ME's credentials as a real disease. They have championed, through their own publications, all forms of research or clinical trials which assume a unitary organic aetiology [11]. Such groups have been at pains to challenge a feared public perception characterised by the epithet ‘yuppie flu’.

In 1994 a report was published by a UK charity organisation called Westcare entitled: ‘National task-force on chronic fatigue syndrome, post-viral fatigue syndrome and myalgic encephalomyelitis report’ [12]. The taskforce was chaired by a prominent research virologist and saw itself as filling a void by providing expert opinion on an important clinical area which official health authorities were unwilling to broach. Among its conclusions was the suggestion that patients with CFS may need to reorganise their lives to avoid unnecessary pressure [12].

In 1995 a report authored by the medical advisor of the most prominent CFS/ME self-help organisation, the ME Association, advised members against graded increases in activity as a form of rehabilitation claiming that it would increase the chance of relapse [11]. This report also claimed that, because of their illness, many CFS sufferers may ‘have to abandon successful careers and accept a much reduced standard of living’ [11].

In the first half of the 1990s UK C–L psychiatry researchers had developed plausible biopsychosocial and cognitive-behavioural conceptualisations to explain how fatigue states may be perpetuated, regardless of the original cause [13]. This allowed the development of rehabilitation programs to help patients recover, even though the reason patients had originally become ill remained in doubt. Further studies demonstrated the importance of patients' illness attributions in predicting clinical outcomes after viral infections [14,15] and, controversially, demonstrated that membership of a CFS/ME self-help group could be associated with a poorer clinical outcome [15]. Encouraged by these and other insights from contemporary research, UK psychiatrists in the mid-1990s began to take up more opportunities to comment in the electronic media and in the press on the potential benefits of psychologically informed management strategies for CFS (for example, see [16,17]).

Two crucial developments in the CFS debate in the UK occurred in 1996. First, UK medical authorities challenged the recommendations of the Westcare report. The Royal Colleges of Physicians, Psychiatrists and General Practitioners published a report entitled ‘Chronic fatigue syndrome’ [18] at the request of the Chief Medical Officer of the UK which aimed to ‘provide a basis of informed, multidisciplinary medical opinion from which the issues surrounding CFS can be viewed’. The report argued that legitimate medical controversies had been misinterpreted by the public with respect to the CFS issue. The report further argued that CFS was the best name for the disease concept available because it was ‘accurate and free from unproven aetiological claims’ [18] in contrast to the label ME which it considered was a term more widely known to the UK public. The report challenged the idea that resting was beneficial or advisable in CFS and suggested that, in fact, rest was more likely to do further harm to CFS sufferers and increase disability. The report argued that more research was needed before meaningful pronouncements on prognosis could be made regarding individual CFS cases.

Second, two landmark randomised, controlled clinical trials of a psychological intervention for CFS, cognitive–behavioural therapy (CBT) in conjunction with supervised, graded increases in activity were completed by independent research teams led by UK C–L psychiatrists [19,20] and were cited in the Royal Colleges' report. To date these two studies represent the only replicated clinical trials with rigorous methodology demonstrating any form of effective management for CFS. Subsequent expert reviews of international published scientific literature [21] and systematic analyses of all known trials of CBT [22] have shown that the overall evidence supports the use of CBT in the management of CFS.

The Royal Colleges' report was reviewed favourably by a British Medical Journal reporter under the title ‘Myths dispelled about chronic fatigue syndrome’ [23]. In contradistinction the Lancet ran an unattributed editorial titled: ‘Frustrating survey of chronic fatigue’ [24] which starkly demonstrated the strong feeling generated by this issue in the UK in the second half of the 1990s, in particular with respect to psychiatric involvement in research and clinical management. The Lancet editorial described the Royal Colleges' committee as ‘top-heavy with psychiatric experts, so the emphasis on psychological causes and management… is no surprise’ [24]. The editorial went on to comment that ‘psychiatry has won the day for now’ and hoped for a day when ‘an organic cause for at least some cases’ was found, the discovery of which, it implied, would embarrass and humiliate the psychiatrist members of the committee. This criticism notwithstanding, psychiatrists were emboldened to comment further in the media on the CFS/ME issue in the role of leaders in research and clinical management (see, for example [25]).

Further indication of the level of official concern regarding the CFS issue in the UK in recent times is the publication in 1996 of two significant reports regarding CFS. First, a report from the Chief Medical Adviser's Expert Group was published commenting on diagnostic and prognostic issues so as to be able to give ‘meaningful advice on social security benefits’ [26]. Second, a large UK health service provider commissioned a report on CBT in the treatment of CFS, carefully reviewing the recent CBT clinical trials, and making estimates of costs and benefits of the treatment for a given population by extrapolating from available epidemiological data on CFS [27]. It concluded that CBT is recommended as ‘outpatient treatment for a certain group of people but the criteria for the selection of those who would gain most needs clarification’ [27].

Psychiatry's role in the chronic fatigue syndrome/myalgic encephalomyelitis controversy in Australia

In many ways the story of the CFS/ME controversy in Australia has run parallel to that in the UK. Australia had its own outbreak of unexplained malaise in Adelaide in 1949 which was reported and analysed in two publications [28,29] and widely cited during the 1950s. As in the UK, ME was the term originally favoured by Australian CFS/ME sufferers and medical professionals alike, but Australian self-help groups have proved less resistant to accepting the use of the term CFS in Australia. The term CFS now appears in the titles of the peak self-help groups in each Australian state.

Media attention and general public debate has arisen in Australia with respect to the CFS/ME issue, but has never reached the intensity of that in the UK. Nevertheless, judging by recent Australian media reports which refer to CFS, journalists assume that the Australian public is familiar with the existence of the disease concept, and the controversy surrounding it.

Articles on CFS in the Australian media have appeared in recent years as features in the colour supplements of weekend newspapers, on the sports pages or on current affairs style television programs. Unlike the pattern in the UK, Australian celebrities who have been profiled as CFS sufferers in media reports are almost invariably sportspeople (for example [30–34]). Just as in the UK, however, non-celebrity CFS sufferers tend to be depicted as profoundly disabled (for example [35,36]) and poorly served by the medical profession (for example [36,37]). Similarly, articles perceived as proposing a psychosocial aetiology of CFS in Australia unleash a backlash of angry and critical comment (for example [38]).

Australian CFS self-help groups have been taking an increasingly active role in the unfolding CFS debate in Australia in recent years. The ME/CFS Society of New South Wales convened what was advertised as ‘the first international scientific conference on CFS’ in Sydney in February 1998 entitled ‘The clinical and scientific basis of chronic fatigue syndrome: from myth towards management’ [39,40]. The conference was opened by the New South Wales Deputy Premier and Health Minister, Andrew Refshauge, and received wide media coverage, the media reports on the conference reflecting a program which focused almost exclusively on research into organic aetiologies for CFS (for example [34,41,42]). Reports of researchers' claims of scientific breakthroughs in organic CFS research appear regularly in the Australian media (for example [30,41,43,44]).

Consultation–liaison psychiatry in Australia has had little to say about the CFS/ME issue to date. The psychiatric contribution to CFS research in Australia was pioneered by Ian Hickie, an academic psychiatrist principally involved in mood disorder research. Hickie began to collaborate with immunology research colleagues at the University of New South Wales (UNSW team) at the time that a debate was occurring in the scientific literature about what was a suitable case definition for the re-emerging clinical concept of CFS/ME. The UNSW team published a clinical case definition of CFS/ME in 1988 [45] and at the same time endorsed the future use of the term chronic fatigue syndrome which had been coined by the CDC in the USA the same year. The UNSW team's endorsement in 1988 played an important role in consolidating the universal use of the term CFS [46].

The particulars of the UNSW team's case definition [45] were criticised at the time, however, by UK psychiatric researchers [47] who argued that the Australian team's definition overlooked the issue of mental fatigue as a central feature of the disorder and presupposed that immunological dysfunction was of primary aetiological relevance by including parameters of abnormal cell-mediated immunity and/or cutaneous anergy in their case definition.

The UNSW team, and Ian Hickie in particular, went on to play a key role in revising the CDC case definition in 1994 [3] to what remains the most universally accepted definition.

In 1993 the UNSW team published a pioneering study of CBT for CFS as part of a randomised, controlled four-cell treatment trial [48]. In the study patients were allocated to one of four treatment groups: (i) CBT plus immunotherapy; (ii) CBT plus placebo injection; (iii) clinic attendance alone plus immunotherapy; and (iv) clinic attendance alone plus placebo injection.

This trial has been widely cited internationally. The fact that a study by the leading CFS research team in Australia found no greater benefit for CFS from CBT than clinic attendance alone may have had a significant impact on the Australian medical profession's attitude to the role of psychiatric interventions for CFS through the 1990s.

The published criticism and analysis of this study again largely arose from C–L psychiatry researchers in the UK. It was argued that the potential effect of the CBT may have been unintentionally diluted by the study methodology including an immunotherapy component, and, indeed, that the CFS patients' beliefs in a solely physical cause of their illness may have been unwittingly confirmed by the simultaneous administration of injected immunotherapy or placebo in the trial making it virtually impossible to challenge such beliefs through CBT strategies within the same treatment trial [49,50].

Draft clinical practice guidelines on the evaluation of prolonged fatigue and the diagnosis and management of CFS produced by a working group convened by the Royal Australasian College of Physicians (RACP) were published in December 1997 [21]. These draft guidelines are subject to further comment and consultation before being published in final form. At the time of writing this has yet to occur.

The Australian guidelines describe their own development as starting in 1990 when the then Commonwealth Minister of Health established a CFS Review Committee to make recommendations on the diagnosis and management of CFS [21]. The review committee approached the RACP who passed the request to the Australasian Society of Clinical Immunology and Allergy who formulated a discussion paper. From this a decision was made to develop an expert consensus position regarding the diagnosis and management of CFS.

Unlike the British Royal Colleges' report described above which aimed to ‘provide a basis of… opinion’ on CFS [18], the Australian ‘clinical practice guidelines’ would appear to be less vulnerable to theoretical criticisms about how the disorder should be defined. Furthermore, since there is only one psychiatrist representative, Ian Hickie, in the sixteen-strong Australian working group, in contrast to the eight psychiatrists on the sixteen-member UK working group, the Australian group ought to be less vulnerable to criticism that it is ‘top-heavy with psychiatric experts’ [24].

Nevertheless, the British Royal Colleges' report is published in a final form and makes clear statements to both the UK public and the medical profession regarding the current scientific status of CFS, whereas the Australian report remains in a consultation and review process 2 years after the initial draft was released publicly [Toulkidis V. Project Officer, CFS Working Group, RACP: personal communication], which is unfortunately undermining the very principle of reaching a timely consensus to minimise unhelpful controversy.

A particular distinction between the Australian draft document and the UK consensus report is the presence in the Australian document of a proposal regarding the issue of prognosis for recovery and ‘permanent’ disability determinations. After stating that the great majority of people with CFS ‘improve gradually or eventually recover’ the Australian draft document suggests that a CFS case of greater than 5 years of disability, during which the person is incapable of gainful employment, should be regarded as ‘permanent disability’ for medicolegal purposes [21]. As we have seen, the very inception of the UK consensus report arose in large part from a wish to challenge the notion that such pronouncements can yet be made in relation to a disease concept where so much remains uncertain.

Discussion

The discipline of psychiatry has a lot to offer in elucidating the nature of CFS and in managing those who suffer symptoms of the syndrome. Psychiatrists, better than most doctors, recognise that it is not necessary to be able to explain the reason for all human distress or disability as disease in order to be able to help the sufferer. Many disorders that psychiatrists successfully treat, such as depression, are, in reality, syndromes of unclear aetiology, which are nonetheless distressing and disabling. Psychiatrists' skill in tolerating such aetiological uncertainties in clinical management every working day gives them certain advantages in dealing with medically unexplained illnesses such as CFS. Furthermore, psychiatrists' familiarity with the pitfalls of researching illnesses without established pathophysiological diagnostic markers also gives them useful insights into how research into CFS should be best designed.

By the same token, the CFS/ME issue offers opportunities to the discipline of psychiatry, especially C–L psychiatry, as it continues to strive to maintain its clinical and research scope [51]. Chronic fatigue syndrome can be seen as a potential Trojan horse for psychiatry, enabling psychiatry to perform a broader role in medical research and a more truly integrated role in the health system.

There are, then, opportunities for psychiatry in the area of CFS, but there are also dangers. The experience in the UK, where there has been vilification of psychiatrists for becoming involved in the research and clinical management of CFS, is concerning and sobering. Long-standing prejudices against people who have psychiatric illnesses and/or are psychologically troubled can be expressed in subtle and indirect ways. Aspects of the CFS debate in the UK could be seen as being a socially acceptable outlet for this prejudice. Australian psychiatrists would do well to note this turn of events and be especially cautious about their own role in the unfolding debate in this country.

To date, the CFS debate in Australia has not become as acrimonious as in the UK and it is interesting to speculate as to why this may be so. Memories of the emotion, conflict and distrust generated by the repetitive strain injury controversy in the 1980s in Australia may in part be responsible.

Nevertheless, CFS in Australia, as in the UK, generates what Robert Kendell is quoted as calling ‘controversy and passions’ [25].

Conclusion

Australian psychiatry can use the UK experience to inform its handling of the evolving CFS debate. The nature of the debate makes it very difficult for psychiatry, especially C–L psychiatry, to remain aloof.

In its handling of the CFS issue in the future there are four tenets to which Australian psychiatry should adhere. First, Australian psychiatry should steadfastly and publicly maintain an open view on the aetiology or aetiologies of CFS. Clever notions that CFS simply represents hysteria in turn-of-the-millenium guise or somatised depression will certainly not be accepted by most CFS sufferers, nor, for that matter, by many in the medical profession. This is not to say that psychiatrists should shy away from diagnosing bona fide psychiatric disorders such as major depression or helping individual patients make the link between physical symptoms and psychosocial stressors or emotional difficulties where the clinical evidence is sound.

Second, Australian psychiatry should place emphasis on rehabilitative approaches to management, which can be effective in bringing about clinical improvement despite uncertainties about the cause of illness.

Third, Australian psychiatric researchers should campaign for psychiatrically informed research which avoids, in particular, the pitfalls of assuming that a recognised and clinically useful clinical syndrome must necessarily represent a unitary disease process.

Finally, Australian psychiatry should publicly express the discipline's sympathy and concern for the plight of CFS sufferers and their families.

Footnotes

Acknowledgements

The author wishes to thank Helen Herrman for her encouragement and guidance.

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Chronic Fatigue Syndrome and Australian Psychiatry: Lessons from the UK Experience

Abstract

Keywords

Psychiatry's role in the chronic fatigue syndrome/myalgic encephalomyelitis controversy in the UK

Psychiatry's role in the chronic fatigue syndrome/myalgic encephalomyelitis controversy in Australia

Discussion

Conclusion

Footnotes

Acknowledgements

References