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A Critique of the Sydney Researchers

This article is about the nature of Government-funded, approved, "official" CFS research in Australia. It was written around 1996-7. For further comment, see the same author's speech on the Psychiatrisation of CFS given at the 1999 Sydney CFS Conference. 

The researchers at the Prince Henry Hospital in Sydney have been studying CFS since 1987. Their early papers were notable for their focus on the physical abnormalities associated with CFS. These papers gave great hope to those of us with this illness.

However, it is now clear beyond any doubt that they have washed their hands of those of us with long term CFS. Their view now is that CFS is not a long-term illness, and those of us that are debilitated for an extended period of time are very likely to be suffering from a psychological problem that prolongs our "subjective" physical symptoms. They dismiss their own earlier immunological findings as evidence of only a "mild" immunological disruption possibly caused by the inactivity of the individual.

On the basis of their earlier work, they have gained important positions in CFS circles. John Dwyer and Andrew Lloyd, for example, are members of the Editorial Board of the Journal of the Chronic Fatigue Syndrome. In Australia, doctors Wakefield, Lloyd and Hickie have been chosen as members of the Federal Government's Chronic Fatigue Syndrome Review Committee.

Since 1994 they have published six papers. Each one has dealt with the psychological aspects of CFS. To understand the dramatic nature of the reversal on their part, it's helpful to very briefly look back to their two most important early papers.

In 1989, the Sydney CFS research team published "Immunological abnormalities in the chronic fatigue syndrome". They assessed Cell-mediated and humoral (T-cell and antibody) immunity and found a significant reduction in the absolute number of peripheral blood lymphocytes in the total T-cell population and in two T-cell subsets (CD4 and CD8) as well as a significant reduction in T-cell function. They also found reduced immunoglobulin (antibody) levels.

The authors stated, "The abnormal cellular and humoral immunity that we have documented strengthens the hypothesis that an immunological disorder may be central to the pathogenesis of chronic fatigue syndrome."

In 1990, "The Psychiatric Status of Patients with the Chronic Fatigue Syndrome" by Ian Hickie, Andrew Lloyd, Denis Wakefield and Gordon Parker was published in the British Journal of Psychiatry. The study investigated 48 CFS patients to determine the prevalence of "psychiatric morbidity" in the patients both before and after the onset of their illness in order to determine if the illness is associated with an increase in psychological disturbance.

They also compared the degree of psychological morbidity of the CFS patients before the onset of their illness to that of the general population. If CFS was primarily a psychological illness, they would have expected to find a higher rate of premorbid (before illness) psychiatric problems in the CFS sufferers.

The study found neuropsychological and/or psychological difficulties were common symptoms of the CFS syndrome. However, they also found that the degree and nature of the psychological problems found in the CFS patients prior to their becoming ill was very similar to that found in the general population. The authors stated,

"In conclusion, we have demonstrated that while depression and anxiety are common symptoms in patients suffering from CFS, there is no evidence from our well defined sample to support the hypothesis that CFS is a somatic presentation of an underlying psychological disorder. Instead, our study supports the hypothesis that the current psychological symptoms of patients with CFS are a consequence of the disorder, rather than evidence of antecedent vulnerability."

Importantly, the authors noted that:

"Our patients differed from those in Australian general practice, principally in terms of their conviction that they were physically ill. Given the controversy surrounding this disorder, the referral of these patients to a tertiary assessment service and their participation in a pharmacological treatment trial, the firmness with which they held this belief and rejected psychological interpretations of the cause of the illness is not surprising."

The publication of "The Treatment of Chronic Fatigue Syndrome: Science and Speculation" in The American Journal of Medicine in 1994 provided an indication that the Sydney group had changed their thoughts about CFS. They referred to the illness as a "heterogeneous disorder" and concluded that future treatments should be based on the "subtypes of the disorder (e.g., documented viral onset, concurrent or premorbid clinical depression)"

The study also included this (uncharacteristically) convoluted sentence, "The assumption that the disorder is chronic may also have increased the rate of false-positive diagnoses by encouraging the identification of patients in whom fatigue and prolonged impairment result from a complex interaction of biological and psychosocial factors; that is, those who remain ill for very long periods are least representative of the disorder." The implications of this seem to be:

1. Those suffering from CFS for an extended period of time are NOT representative of the illness because "psychosocial factors" have prolonged their impairment.

2. The false assumption by the diagnosing doctor that the illness is chronic has caused individuals who do not have the illness to be diagnosed as having CFS.

3. CFS is not a long term illness.

The group's subsequent papers confirm that these assumptions underpin their view of CFS and also illustrate their dramatically changed attitude towards the strong belief by CFS patients in the physical nature of their illness. Rather than being "not surprising", this conviction in a physical illness became evidence to the group that the CFS patient was indeed suffering from a psychiatric problem that would act to prolong the "subjective" feelings of exhaustion.

The Sydney team's next paper, "Longitudinal study of outcome of chronic fatigue syndrome", published in the British Medical Journal in March of 1994, examined 138 CFS patients in an attempt to discern the specific determinants of illness outcome. They looked at age of onset, duration of illness, psychological and immunological status at initial assessment, then examined current symptom severity, level of disability and immunological function.

They concluded that, "psychological factors were important determinants of outcome. Strong conviction in a physical disease process at initial assessment was associated with poor outcome. These findings suggest that subjects who deal with distress by somatization (presenting physical rather than psychological symptoms) and who discount the possible modulating role of psychosocial factors are more likely to have an unfavourable outcome. The presence or absence of a specific psychiatric diagnosis may not be as important as a defensive style and attitudes to illness."

The study prompted this headline in the Australian Doctor Weekly: "MENTAL SIGNS A POINTER TO CFS" . The article stated that the study had found that, "psychological rather than immunological factors were the most reliable prognostic predictors in patients with CFS." Dr Andrew Wilson, a co-author of the study, was quoted as saying, "Psychological factors such as patients' attitudes to their illness and their way of coping were the most significant predictors of prognosis. Patients who believed a physical disease explained all their symptoms did significantly worse than others. Therefore it was important to encourage patients to broaden their outlook on what was a 'biopsychological' disorder, rather than focusing on just one aspect of their illness."

Further implications of the study can be seen in a reply written by the Executive Director of the New South Wales branch of the Australian Medical Association to a lady questioning the attitude of the AMA to the chronic fatigue syndrome. Part of the Executive Director's letter reads:

"I enclose for your information a leading article from the same issue of the BMJ. The leading article presents a carefully considered view of the problem, taking all factors into account, and probably represents the thinking of most doctors who deal with these patients...May I draw your attention to the following points from the article:

(i) the matter remains controversial
(ii) there is a strong correlation between the "chronic fatigue syndrome" and emotional illness
(iii) there is no demonstrated correlation with immunological factors
(iv) the patient's conviction that the illness is a physical disease correlates with the severity of the illness
(v) the possibility cannot be ignored that a patient's strong belief in a physical cause may itself cause prolonged and preventable disability.
(vi) "it is mandatory that doctors explore the psychiatric dimension in all patients."
(vii) the worst outcomes are reported by those who view the condition as having an entirely physical cause and advocate complete rest."

In September 1994, reporter Mark Ragg published an article on CFS in The Australian Magazine that included an interview with Dr Andrew Lloyd. Ragg stated, "Lloyd has come to the conclusion that CFS, which is believed to affect roughly 5000 - 10,000 people nationally, comprises at least two fairly discrete groups. One suffers from what he calls somatization - psychological problems which manifest as physical illness. This is the group I'm least interested in - I'm not a psychiatrist and I can't offer them much,' he says. The other group, to put it simplistically, were healthy people who got a virus and didn't get better. They are far more likely to recover than the first group."

It was clear that by the end of 1994, the Sydney team had washed their hands of those with long-term fatigue, arguing that CFS patients tended to recover whilst those with long-term illness were much more likely to have a psychological problem, rather than CFS.

The research group is now dismissive of their earlier immunological findings. In an article published in the Medical Journal of Australia in September 1995 entitled, "Chronic Fatigue Syndrome: current perspectives on evaluation and management", they state:

"Consistent findings in immunological studies have included: increased numbers of peripheral blood T lymphocytes bearing activation markers; reduced proliferation responses of peripheral blood lymphocytes after stimulation with mitogens; impaired natural killer cell cytotoxicity; and increased prevalence of cutaneous anergy. These data do not implicate a specific immunological defect, but are non-specific markers of a mild disorder of cellular immune regulation...The immune changes described may be part of a primary patho-physiological process or arise as secondary phenomena (e.g., to physical inactivity or sleep disturbance)."

The belief that long-term illness was primarily a psychological problem was reiterated in the 1995 paper:

"Predictors of persistent disability and symptoms included a psychiatric diagnosis at follow-up and the strength of the patient's belief in a purely physical cause for their illness. Bonn et al reported that the long term outcome of 46 patients offered treatment for CFS four years previously was generally favourable, as only 34 percent still had CFS. Notably, spontaneous recovery was unlikely in those who declined or did not benefit from initial treatment, while poor outcome was also predicted by those with more severe fatigue initially, a more somatic focus in reporting symptoms and in those with a prior history of psychiatric disorder. By contrast, spontaneous recovery in patients with shorter duration in primary care appears to be high. Poor long term outcome appears to be predicted by psychological factors (past or current psychiatric disorder, a rigid belief in an 'infective' aetiology) and behavioural factors (decreased activity and social isolation) rather than immunological or infective factors."

Another paper was published by the researchers in 1995, "Can the chronic fatigue syndrome be defined by distinct clinical features?" in the U.K. journal Psychological Medicine. A careful reading of this paper provides very clear evidence that the Prince Henry team have relegated those with either long-term or severe CFS to a psychiatric diagnosis.

In order to evaluate the comments of the researchers in this paper, it's important to understand that somatoform disorder is defined as a psychiatric condition in which an individual experiences.physical complaints that have no medical explanation, that occur over a period of several years and results in significant impairment in social, occupational or other important areas of functioning. Attributing physical complaints to somatoform disorder is an unambiguous declaration that the complaints are of a psychiatric rather than physical origin.

In their 1995 Psychological Medicine paper, the Sydney researchers divided a cohort of CFS patients into two groups (Class I and Class II) on the basis of severity of illness, duration of illness, severity of current psychological morbidity, utilization of medical services and CD8 cell subset counts. Two groups of symptoms were drawn up - one consisting of "typical" symptoms, the other "atypical" symtoms. The "atypical" symptoms which the authors describe as "bizarre and unusual" are:

1. Short of breath on minor activity                             6. Persisent cough
2. Repeated fevers and sweats                                   7. Difficulty swallowing foods
3. Persistent red eyes                                                 8. Episodic loss of control of bladder
4. Persistent dry eyes and mouth                                9. Red/swollen joints
5. Recurrent diarrhoea                                             10. Episodic loss of vision

The authors said of the Class I group (73%), "Class I patients were characterised by a greater proportion of males, reporting fewer symptoms, shorter duration of illness, less severe course of illness, lower current psychiatric moribidity, less hypochondrial concerns, fewer medical consultations, less disability and less previous treatment with antidepressants."

They continued, "...we propose that Class I and Class II patients represent distinct clinical subgroups. To us, the more homogeneous smaller (27%) sub-group identified appears to represent primary or severe somatoform/somitization disorders. This class is characterized by multiple somatic symptoms, chronicity, high rates of health care utilization, high rates of current psychiatric morbidity and higher CD8 cell counts."

The authors suggest that those CFS patients who are more severely affected are, by definition, suffering from somatoform disorder. Those with more symptoms, who are ill for longer periods of time, whose symptoms are more severe and who request medical assistance more often are automatically seen by the researchers as psychiatric cases. The result of this reasoning, of course, is that those most in need of medical assistance would be the least likely to receive appropriate care.

To illustrate how far the Sydney researchers have distanced themselves from their earlier attitude towards CFS, it's interesting to compare their statements in the 1995 Psychological Medicine paper with this quote from letter written by Ian Hickie and Gordon Parker in 1990 published in the British Journal of Psychiatry:

"Whenever patients with non-specific physical complaints fail to demonstrate evidence of a known disorder, psychiatric evaluation is likely to follow. Often this is appropriate. As has been seen in patients with myasthenia gravis (Nicolson et al 1986), however, such patients are often mislabeled by psychiatrists as 'somatizers' until the actual nature of the disorder is later revealed. To avoid that pitfall, psychiatric diagnoses should be restricted to the identification of 'typical' disorders in patients with positive features of psychological disturbance. More doubtful notions such as 'somatisation' should not be invoked haphazardly to conceal a lack of basic knowledge."

In May 1996, The Medical Journal of Australia published another paper by the Sydney group entitled, "Fatigue in selected primary care settings: sociodemographic and psychiatric correlates". This paper attempted to compare social subgroups of "prolonged fatigue/neurasthenia" sufferers using the criteria of gender, socioeconomic status, years of education and also to determine the prevalence of psychological disorder amongst these patients.

The authors stated, "Fatigue was more common in women, patients of a lower socioeconomic status and patients with fewer years of formal education... There was a high association between fatigue and psychological disorder." They concluded,

"Our study provides key information about the sociodemographic and psychiatric correlates of prolonged fatigue. A female bias for reporting fatigue has been shown in several primary care studies, and in the general population. Women also have higher rates of psychological distress, particularly depression. The association between lower socioeconomic status and fewer years of formal education with fatigue suggests that these are risk factors for fatigue states, although it is also possible that patients with prolonged fatigue syndromes are at increased risk of poorer educational and socioeconomic and socioeconomic outcomes."

It can be seen from these studies that this group no longer has an interest in the physical aspects of CFS. I would encourage everyone to read the full papers.

The papers published since 1994 by the Sydney researchers are:

1. Wilson A, Hickie I, Lloyd A, et al. Longitudinal study of outcome of chronic fatigue syndrome. British Medical Journal 1994; 308; 756-759.  Abstract

2. Lloyd A, Hickie I, Wilson A, Wakefield D. Immune Function in Chronic Fatigue Syndrome and Depression. Clin. Immunother 1994; 2; 84-88.

3. Wilson A, Hickie I, Lloyd A, Wakefield D. The Treatment of Chronic Fatigue Syndrome: Science and Speculation. The American Journal of Medicine 1994; 96; 544-548. Abstract

4. Hickie I, Lloyd A, Hadzi-Pavlovic D, Parker G, Bird K, Wakefield D. Can the chronic fatigue syndrome be defined by distinct clinical features? Psychological Medicine 1995; 25; 925-935. Abstract

5. Hickie IB, Lloyd AR, Wakefield D. Chronic fatigue syndrome: current perspectives on evaluation and management. The Medical Journal of Australia 1995; 163; 314-318. Abstract

6.Hickie IB, Hooker AW, Hadzu-Pavlovic D, Bennett BB, Wilson AJ, Lloyd AR. Fatigue in selected primary care settings: sociodemographic and psychiatric correlates. The Medical Journal of Australia 1996; 164; 585-588. Abstract

See also:

“Reviving the diagnosis of neurasthenia”, by Ian Hickie. Editorial. Psychological Medicine 1997; 27: 989-994. Abstract

Hickie I: Nefazodone for patients with chronic fatigue syndrome. Aust N Z J Psychiatry 1999 Apr;33(2):278-80.  Abstract

Illness or disease? The case of chronic fatigue syndrome by Andrew R Lloyd, Ian B Hickie, Robert H Loblay Medical Journal of Australia (MJA 2000; 172: 471-472) 15 May 2000

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