To members of

RACP CFS CLINICAL GUIDELINES WORKING GROUP -
SEMANTICS-BASED MEDICINE FOR CHRONIC FATIGUE SYNDROME?

The failure of the draft guidelines to address the more severe forms of CFS has compounded instances of serious harm over the past two years. Practitioners have quoted the document, ignoring its draft status, to reinforce cognitive behavioural treatments.

While the broad spectrum of clinical manifestations are meticulously recorded in earlier case history studies by distinguished clinicians such as A. Wallis, M. Ramsay, E.D. Acheson (1), currently similar presentations are classified as representing psychiatric disorder. This view has now been strengthened by the draft guidelines.

Symptoms of recurrent vomiting, gastroparesis, intestinal dismotility, severe weight loss, paresis, intractable pain, sweating, chills, recurrent diarrhoea, etc are dismissed with shifting diagnoses such as somatoform disorder, abnormal illness behaviour, Munchausen Syndrome by Proxy, conversion disorder or hysteria.

These misattributions place patients at grave risk. Supportive practitioners can find themselves unable to access the acute hospital care they feel is required. Carers struggle to cope with medical crises which in any other condition would receive urgent attention.

A recent BBC Panorama documentary exposed to public scrutiny the many cases of young people with severe CFS who, with their families, become embroiled in disputes over punitive treatment regimes. As a consequence young people can face removal from their families through court processes and placement into foster care.

In Australia today there are families facing judicial intervention in similar disputes - "child abuse by health professionals" (2). In one such Sydney case of a young girl, A., who became ill with symptoms which fulfilled the criteria for CFS diagnosis following viral encephalitis, the judge's summary states "against the chance that she was suffering from chronic fatigue syndrome, she was given two infusions of intravenous gamma globulin but without any significant improvement in her condition". The view of the doctors was then taken that A. was not suffering from CFS. A. was removed from her family to foster care for two years (3).

The judiciary acknowledge the difficulties in evaluating expert testimonies, especially psychiatric evidence (4). In such cases symptoms are reinterpreted through the "lens of disbelief". Young people and their families complain of the many inaccuracies, omissions, misrepresentations and fabrications, both verbal and written, by medical and allied health practitioners.

Jill McLaughlin, consumer representative, 1999 Centres for Disease Control and Prevention CDC CFS Review Group, in her testimony to the United States CFS Interagency Coordinating Committee (5), articulated the true position faced by those with CFS -

Paul Cheney MD, PhD., US Researcher/Clinician - has said in testimony (6) regarding severity -

The recent paper published in the Medical Journal of Australia by three key members of the Royal Australasian College of Physicians (RACP) Working Group raises serious concerns in the light of the imminent release of the final document - "Clinical Practice Guidelines for Chronic Fatigue Syndrome".

What new insights does "Illness or disease? The case of chronic fatigue syndrome" (7) offer physicians and their patients?

The authors, A Lloyd, I Hickie, R Loblay, find "unnecessary polarisation of aetiological models is intellectually shallow and harmful to patients". They advocate adoption of the Hong Kong model (8) where specific notions of cause make little sense. It should be noted that the relevance of the Hong Kong study of chronic fatigue to chronic fatigue syndrome is obscure as "CFS diagnosed according to the CDC criteria was rare - 3% and atypical". However the study does align with the more recent research focus of Lloyd and Hickie (9).

Without caution the authors encourage "a rehabilitative approach to the illness including graded physical activity" - a key component of cognitive behavioural programs for CFS. Such a broad prescriptive approach disregards the earlier admission of the authors that it is not yet clear that benefits of cognitive behavioural approaches are generally applicable and that "heterogeneity within patient groups makes it likely more than one process is operative' (7).

Again, the authors ignore their own warning that "rejecting the patient's illness experience is likely to promote feelings of alienation and to perpetuate ill-health" (7).

Consumer submissions to the RACP Working Group strongly emphasised the potential harm and risk of relapse from such prescribed programs.

The advice of Lloyd, Hickie and Loblay fails to recognise that limitations are imposed by the patients' condition and ignores the heroic efforts made by those with CFS to recover function. Indeed fatigue may be physiologically protective - in the absence of evidence based pharmacological interventions, the role of rest in repair/recovery remains to be evaluated. Chronic fatigue syndrome may be no more precise a diagnosis than "consumption" which evolved to reveal respiratory diseases of distinct aetiologies and treatments despite core shared symptoms - bronchitis, asthma, cystic fibrosis, tuberculosis, etc. The description of pain and fatigue as "disturbed perception" fails the authors' own counsel "to acknowledge the limitations of our current state of knowledge" (7).

In less than 7 lines out of more than 120, evidence of biological processes is dismissed.

In sharp contrast, the recent American Journal of Medicine, (10), A. Komaroff, Professor of Medicine, Harvard Medical School, in his overview "The Biology of Chronic Fatigue Syndrome" details the expanding evidence indicating pathology of the central nervous system and immune system. The author also provides supporting evidence for the view that CFS "can be triggered in susceptible patients by chronic infection with any of several agents that are difficult or impossible to eradicate".

In summary, Komaroff argues "There is now considerable evidence of an underlying biological process and evidence inconsistent with the hypothesis that CFS involves symptoms that are only imagined or amplified because of underlying psychiatric distress - symptoms that have no biological basis. It is time to put that hypothesis to rest and to pursue biological causes in our quest to find answers for patients suffering from this syndrome". Such quests are providing answers previously strenuously opposed, for many diseases:

• the link between obsessive compulsive disorder and streptococcal infection in genetically susceptible children leading to effective treatment such as plasma exchange (11)
• the earliest infectious hypotheses for peptic ulcer were articulated in 1875 (12), but accepted dogma of psychological and social distress as causative prevailed until the late 1980s
• 3 year antibiotic trials are commencing for treatment of Crohn's disease (13) due to a suspected link with bacterial infection
• a new bacterium has been implicated in Whipple's disease (14)
• links between autism and clostridium tetani are being examined (15).

It is worth noting Clem Boughton, Professor of Infectious Diseases, Prince Henry Hospital, Sydney highlighted work (16), which has demonstrated persistent infection in macrophages of those with post Q fever CFS, unlike those who recovered.

Dennis Wakefield, Professor of Pathology, University of New South Wales in reviewing CFS (17), with reference to the possible role of infections, postulated "in the future the approach may be to eradicate the specific infection in the first place".

John Pearn, Surgeon General AMF and distinguished Professor of Paediatrics and Child Health, University of Queensland continues to publish on the role of abnormal ion channel function in CFS (18), work which receives scant attention.

Semantic arguments and biased attributions continue to deny the very ill, young and adult, their right to access quality care which addresses acute medical needs without fear.

The failure of The Working Group to address these matters will have most serious implications for all concerned.

The Centres for Disease Control and Prevention 2000 Overview of the CFS Program is enclosed for your information.

Directors of the Board
Alison Hunter Memorial Foundation

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