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Richard Larkins, former president of the RACP, and Simon Molesworth, Chairman of the National ME/CFS Association. wrote a joint letter to the Medical Journal of Australia after the publication of the Guidelines. They reminded their medical colleagues that the Guidelines are not the final word on CFS: more research is needed, and in the meantime despite the Guidelines doctors need to adapt treatment methods to individual patients. They stated:
"There is no evidence that the illness is primarily psychological in origin" and
"There is significant evidence of a range of biological abnormalities occurring in people with CFS."
The letter appeared in the 1 July 2002 issue of the MJA (MJA 2002 177 (1): 51-52) and there were several responses. One was from Dr Ian Hickie - who was on the Guidelines working party, and a major influence on their content. Note that in his letter, he unambiguously refers to CFS as a "common mental disorder" and "neuropsychiatric".
Chronic fatigue syndrome clinical practice guidelines: psychological factors
To the Editor: ... Contrary to its intent, and in contrast to the recently published Royal Australasian College of Physicians (RACP) guidelines, the recent statement by the immediate past president of the RACP and the Chairman of the ME/Chronic Fatigue Syndrome Association of Australia is in danger of increasing the stigma for both people with CFS and people with other common mental disorders ....Their letter reinforces the classical "dualistic" and rather simplistic "biological" approach (eg, "There is significant evidence of a range of biological abnormalities occurring in people with CFS"). Unwittingly, it colludes with community-based beliefs that mental health problems are "not health", and often imaginary or under the voluntary control of the patient.
There is no doubt that people with CFS share many experiences with people with other neuropsychiatric disorders. They both have daily experiences where their credibility is challenged, their disability is minimised and their needs for appropriate medical management are not met ....
Unfortunately, the major advances captured in the guidelines may now be undermined if the RACP is perceived to be backing away from supporting appropriate psychological assessment and provision of effective "psychological" treatments (such as cognitive-behavioural therapy and physical rehabilitation approaches). Similar equivocation has left clinical guideline processes in the United Kingdom in disarray. [He is referring to the CMO's report which was welcomed by the majority of advocacy organizations in the UK.]
As demonstrated recently, prolonged fatigue syndromes are common in the Australian community, and the vast majority of those who seek healthcare services have concurrent depression or anxiety. Real progress towards destigmatisation, meaningful research progress and improved health services for people with CFS will only occur when the field is mature enough to deal with the clear relevance of psychological factors. Instead of rejecting "psychological factors" and associated treatments, relevant professional and consumer bodies should now join with the broader community movement towards increased community awareness of common neuropsychiatric disorders, genuine understanding of their (genetic, "biological", psychosocial and personal) causes and provision of effective (pharmacological and psychological) treatments. MJA 2002 177 (9): 526
Another psychiatrist, James D Hundertmark of the Flinders Medical Centre, Bedford Park, SA, called the Larkins-Molesworth letter a "somewhat predictable response" and said, "Some sufferers of CFS can be characterised by their capacity to react strongly to the suggestion that psychological factors may be involved in the pathogenesis of their condition." (Too right!). He concluded:
The mental health movement has worked hard in recent times to reduce the stigma associated with psychiatric conditions. The sufferers of chronic physical illness now accept the importance of looking after their emotional health as well as their physical well-being. Enlightened CFS sufferers and support groups accept the links between physical and psychological morbidity and do not mindlessly exclude the latter. There is ample evidence that cognitive-behavioural strategies and graded exercise programs assist those with CFS, and psychiatrists are skilled in providing these treatments. MJA 2002 177 (9): 525-527
Both these letters accuse ME/CFS patients of resisting a psychiatric diagnosis because it is stigmatising, and of viewing mental illness as "imaginary". I think this misses the point. It is possible to acknowledge the validity of illnesses such as bipolar depression and schizophrenia, while at the same time insisting that the psychiatric account of CFS/ME is utterly inconsistent with sufferers' experience of their illness - it simply doesn't make sense.
Noone in their right mind would call illnesses such as schizophrenia or depression imaginary. However, a psychiatrist can explain to a person with schizophrenia or bipolar disorder that altered brain chemistry is causing their mental symptoms. By contrast, the biopsychosocial explanation for ME/CFS is in terms of "faulty beliefs" and "cognitive and behavioural responses, such as fear and avoidance" of activity. (T Chalder, J Tong and V Deary "Family cognitive behaviour therapy for chronic fatigue syndrome: an uncontrolled study." Archives of Disease in Childhood Feb 2002; vol. 86: pp. 95-97)
Many sufferers feel not so much stigmatised as insulted by this patronising account of ME/CFS. Where there is stigma, it comes not from the label of "mental illness" but from the suggestion that (unlike "real" psychiatric patients) people with ME/CFS don't have anything physically wrong with them. Sufferers also object to being pressurised into treatments that do no good, or actually harm, while being denied the chance of trying something that might help. (Ironically, as we have seen, Hickie acknowledged in his letter that these things happen to CFS patients - just as they do to "people with other neuropsychiatric disorders.")
In another response, Dr Beard of Modbury Hospital showed complete ignorance of the nature of the illness:
From time to time everyone becomes physically or mentally exhausted … For some people this exhaustion becomes disabling,
and of the existing research evidence, even that quoted in the Guidelines:
It was stated that scientific evidence of the aetiology, pathology and treatment is grossly deficient. It is in fact absent. There is no evidence at all. Research is certainly required. MJA 2002 177 (9): 526
Larkins and Molesworth responded to the letters as follows:
In reply: We thank the writers for their comments on the CFS guidelines and our joint letter about these guidelines.
Hundertmark remarks on the interplay between physical and psychological factors in morbidity associated with CFS. We trust that our letter in no way contradicts this. Similarly, the inferences that Hickie drew from our letter are not supported by the text of the letter. Far from undermining the guidelines, our letter had the full support of the convenor of the working party responsible for the guidelines.
As clearly discussed in the guidelines, in the absence of specific diagnostic tests it is likely that a range of factors may contribute to the pathogenesis of CFS. Assumption of a primarily "psychological" pathogenesis is as unjustified as assumption of a primary "physical" basis. There are "abnormal" test results in many people with CFS, including abnormalities of the hypothalamic-pituitary-adrenal axis and some abnormalities of immune function. As stated, it is controversial whether such abnormalities are primary or secondary.
While cognitive-behavioural therapy with graded exercise is effective in some patients, the guidelines outline the deficiencies of the evidence which "significantly limit the generalisability of the findings". As the guidelines indicate, and as is supported by our letter, treatment should be designed in partnership with the patient, and tailored according to the patient's capacity and response.
Finally . . . we restate the need for further research into the aetiology, pathology and treatment of CFS. We believe that effective progress in the management of this complex and mysterious illness will be best achieved by positive and cooperative rather than adversarial relationships between those suffering from the condition and the doctors and researchers attempting to help them. MJA 2002 177(9):526-527
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last revised 30 Dec 2002