RACP Guidelines for CFS

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?

"Ultimately the guidelines will be judged by practitioners and the community. Their effectiveness will depend on how well we address the concerns of patients."
Dr Robert Loblay, 25 February 1998.

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:

"Traditionally, guidelines have been based on a consensus of expert opinion. However, there are limitations to this process. Expert opinion does not always reflect the state of current medical knowledge (Antman et al, 1992). Even where guidelines are supported by literature surveys, the unsystematic processes by which the medical literature has been analysed can lead to biased conclusions (Effective Health Care Bulletin, 1992; Woolf, 1992; Mulrow, 1994). In the past this has led to unnecessary delays in the recommendations of effective interventionsÉ. (Antman et al, 1992)."

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:

  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).

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

"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

Appendix 1

Article

'Bitter Pills for Peers' by Melissa Sweet, the SMH Medical writer.

Appendix 2

Quote

One paragraph quote from CHROME 1997 Progress Report

Appendix 3

Letter

From the Office of the Minister for Health and Family Services

Appendix 4

Letter

From Ian Hickie to the British Journal of Psychiatry

Appendix 5

Editorial

By Dr Robert Loblay in the Medical Journal of Australia

Appendix 6

Letter

From the Royal Australasian College of Physicians

Appendix 7

Quotes

A list of severe symptoms, and quotes on the subject.

Appendix 8

Letter

From Ian Hickie to Christine Hunter

Appendix 9

Letter

From Christine Hunter to Ian Hickie

Appendix 10

Article

'CFS In Adolescents: Spectrum of Illness' by Dr David Bell

Appendix 11

Article

Personal experience of ME/CFS by Michael Lyons

Appendix 12

Letter

From Queensland ME/CFS Society to RACP Working Group

Appendix 13

Letter

From South Australia ME/CFS Society to RACP Working Group

Appendix 14

Letter

From ME/FMS Country Network Australia to RACP Working Group

Appendix 15

Letter

From Victoria ME/CFS Society to the AHMF

Appendix 16

Letter

From Western Australia ME/CFS Society to the AHMF

 

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Alison Hunter Memorial Foundation
PO Box 6132 North Sydney 2059 Australia
Phone/Fax +61 2 9958 6285

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