Betrayal of the Severely Ill?
Letter to the RACP re the CFS Draft Guidelines

25 May 1998

To the Working Group convened by the Royal Australasian College of Physicians

Re: Chronic Fatigue Syndrome (CFS) Clinical Practice Guidelines - Exposure Draft

Betrayal of the severely ill?

We ask that you, being a member of the Working Group responsible for the Draft Guidelines, carefully consider the matters raised in this letter and the implications of the enclosed papers. Each member of the Working Group will be responsible for the far reaching effects of the final document.

As quoted in the National Health & Medical Research Council, "Guidelines for the Development & Implementation of Clinical Practice Guidelines", October 1995:

It would appear the process of peer review itself is under question. "A pervasive problem is researchers' tendency to push a particular agenda in reporting their findings," Dr Richard Smith, editor of the British Medical Journal, said in describing the outcome of a recent International Congress on peer review in Prague. "The central message from the conference was that there is something rotten in the state of scientific publishing and that we need radical reform," he concluded (Appendix 1).

The Draft Guidelines risk the perception that they reflect the bias of the research team which reviewed the literature and prepared preliminary drafts. It would appear that this research bias has persisted since the CIBA Foundation meeting on 12-14 May, 1992.

Members of the Working Group are responsible for providing guidelines which assist doctors in the provision of best practice care to people with CFS. The present limited knowledge of molecular interactions, the role of infectious agents, heterogeneous groups, early evidence of potentially serious pathology, encephalopathy and cardiovascular involvement would dictate a cautious approach.

With reference to extensive literature reviews, long established contact with international researchers and clinicians, and most importantly observation and attention to the experiences of people with CFS over more than a decade, we have concluded that:

• Prescriptive clinical management guidelines are inappropriate because:

1. pathophysiological processes of the syndrome are not yet understood;
2. there appears to have been no long term monitoring of the disease (Appendix 2);
3. there does not appear to have been any long term evaluation of the outcomes of present strategies for people with CFS such as Cognitive Behaviour Therapy (CBT).

• Consumer groups world wide are concerned that allocation of research funding may have prejudiced the evidence base, "In 1996 the NH&MRC is providing over $454,000 for research into CFS through a program grant into depression at the University of New South Wales" - Office of the Minister for Health & Family Services, 13 June 1996 (Appendix 3).
• The Draft Guidelines' use of the term "somatoform disorder" in reference to the severe end of the CFS spectrum ignores the duty of care responsibilities of doctors to the severely ill.
• Associate Professor Ian Hickie et al, appear to have ignored their concerns expressed in 1990 concerning the mis-use of the term 'somatoform disorder' in relation to CFS, ie. "This [somatoform disorder] is at best a highly speculative hypothesis. Such patients are often mislabelled by psychiatrists as 'somatisers' until the actual nature of the disorder is later revealed. To avoid that pitfall, psychiatric diagnosis 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" (Appendix 4).
• On the same subject, Dr Robert Loblay said in the Medical Journal of Australia in 1995, "A label such as 'somatisation disorder' calls into question the reality of illness and renders ambiguous the individual's status as a 'patient'." (Appendix 5).
• It would seem that the Guidelines perpetuate the mislabelling and promote the research bias of Wakefield, Hickie, Lloyd et al, whose work has classified as somatoform the severe CFS symptom group (including the symptoms of shortness of breath with minor exertion, repeated fever chills and recurrent diarrhoea - Psychol Medicine, 1996, 25, 925--935).
• Significantly, it should be noted that, at the 1996 United States CFS Conference in San Francisco, Lloyd speculated that, in relation to the severe symptom group,

"We may be looking at the severe end of the disease."

• Further, in February 1997 Project Officer Victoria Toulkidis responded on behalf of the Working Group to questions put by the Consumer Representative regarding issues of severity,

"This is an important issue which has not been specifically considered thus far" (Appendix 6).

It would appear that this "important issue" never was considered. The Draft Guidelines omit this issue and fail to identify it at all as a gap in knowledge and an area which requires further research. We believe that the implications for the severely affected arising from inappropriate clinical practice based on the present Guidelines are grave.

While ever the Draft Guidelines fail to address the symptoms of this patient group (pain, gastroparesis, paralytic ileus, paresis, paralysis, seizures and incontinence) their right to appropriate care is denied. In cases when severe symptoms are recognised, re-diagnosis is commonly attempted in order to accommodate such symptoms. In most cases, however, no alternative diagnosis is established. Thus, those in desperate need have been, and continue to be, misdiagnosed and threatened with removal to State or psychiatric care.

As a member of the Working Group, with shared accountability for serious omissions, we ask that your most urgent and serious consideration of these matters will shortly be reflected in changes to the Guidelines.

Yours faithfully,

Christine Hunter
Annette Leggo, Michael Lyons, Tony Peri, Maureen Stephenson, Jim Walsh
Executive Committee
Alison Hunter Memorial Foundation

Please note appended letters of support from Australia-wide consumer societies.

Alison Hunter Memorial Foundation
43 McIntosh Street
Gordon NSW 2072

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