AHMF: Letter to RACP Working Group 19/04/02

Professor Richard Larkin
President
Royal Australasian College of Physicians
145 Macquarie Street
SYDNEY NSW 2000

Dear Professor Larkin

Royal Australasian College of Physicians Working Group for Chronic Fatigue Syndrome
Clinical Practice Guidelines 1996-2002

First do no harm

For the past decade, initiatives to bring consensus and appropriate care to people with chronic fatigue syndrome (CFS) have failed — through inaction, misattributions, denial and neglect.

In 1994 serious inequities in medical care for those with CFS were confirmed by surveys of Royal Australasian College of Physicians (RACP) and Royal Australian College of General Practice (RACPGP) members revealing "significant areas of ignorance, misconception and prejudice".[1] The RACP initiative in 1995 to redress these findings was therefore urgent and important.

In 1997 Dr Robert Loblay, Chair of the Working Group (WG) wrote "Ultimately the Guidelines we produce will be judged by practitioners and by the community. Their effectiveness will depend on how well we address the concerns of patients and the needs of practitioners". [2]

However The Alison Hunter Memorial Foundation is united with the ME/Chronic Fatigue Syndrome Association of Australia Ltd to strenuously reject the Guidelines final draft 2002. The Guidelines have been seriously compromised by the flawed and protracted process of development over six years (1996-2002). (RACP — Failures of Guidelines Process 1996-2002 Appendix 1)

No amount of superficial expressions of empathy written into the Guidelines can mask the insidious psychological/psychiatric misattributions which pervade the document and demand to be challenged by an objective evaluation of the scientific evidence.

In response to final manuscript 2001, Peter Rowe, Professor of Paediatrics, John Hopkins University School of Medicine, noted
"The complete failure to integrate the scientific evidence regarding circulatory abnormalities in CFS"
"Guidelines that do not even acknowledge the research findings in this area will risk being dismissed as hopelessly biased".

Abhijit Chaudhuri, Clinical Senior Lecturer in Neurology University of Glasgow highlighted many inaccuracies
"This claim is unfounded and lacks evidence"
"This section is a mixture of imagination and half truths and should be entirely deleted"
" the RACP is confusing the issues of CFS and unevaluated fatigue"
"seriously misleading"
(International clinicians/researchers evaluate the evidence Appendix 2)

In 1999 Dr John Best, National Health and Medical Research Council's (NHMRC) Strategic Research Development Committee (SRDC) Chair cautioned that "wide difference in the definition of the syndrome... makes it extremely difficult to determine the reliability of the data".[3] Dr Best's caution is critical to the entire evidence on which the Guidelines are based, and cannot be dismissed with a few scattered disclaimers.

Any rigorous analysis of the document will demonstrate the Guidelines

fail to accurately represent the spectrum of illness
seriously neglect the severely affected
mislead by the selectivity and inconsistency in the use of evidence
dismiss key consumer concerns, diminishing their expertise in self management learned through experience

(A Critical Analysis of RACP CPG on CFS — Elizabeth Wood Appendix 3)

In a recent editorial "The Biology of Chronic Fatigue Syndrome",[4] Anthony Komaroff, Professor of Medicine, Harvard Medical School and Chair of the Centers for Disease Control CFS Program Review Committee wrote "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—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". He detailed expanding evidence indicating a role for chronic infection and pathology of the central nervous system and immune system.

Despite the strength of the emerging biological evidence, inconsistent with psychiatric labels, lengthy passages in the Guidelines perpetuate speculative hypotheses such as maladaptive illness behaviour and somatoform disorder. Such labelling reflects the bias and determination of researchers who accord aetiological status to non-causal associations on which the key management suggestions are based. It reflects poorly on the scientific rigour of the document.

The serious neglect by the Guidelines of the severely affected is indefensible and sharply focussed by comparison with the January 2002 Chief Medical Officer — CFS/ME Working Group Report, UK. This report gives particular emphasis to the severely affected, directly addressing such issues as wheelchair use, care services for the bedbound, tube feeding and inappropriate child protection proceedings. The implications of this neglect are grave. Those most in need will be denied appropriate medical care. Through misattributions and misdiagnosis, cases of enforced removal of young people through court processes will continue to occur.

How will the busy practitioner assess the safety and reliability of the management advice?
The central but misleading message of strong evidence supporting cognitive behaviour therapy and graded exercise as effective treatments will have a powerful influence on clinical practice:
" discourage excessive rest"
"minimise impediments to recovery (loss of aerobic fitness, disruption of the sleep wake cycle, intercurrent depression and social isolation)"
"graded exercise... can improve functional status"
"the more severe end of the disability spectrum may require a more intensive multidisciplinary approach to rehabilitation"

Such recommendations conflict with the admission elsewhere in the Guidelines of the factors which
" significantly limit the generalisability of findings"
"in most studies patients were only included if they were well enough to attend clinics"
"many studies have significant refusal and dropout rates which may reflect on the acceptability of the treatment regimes".
The seriously affected who are housebound have never been studied.

In response to the release of the 1996 UK Royal Colleges of Physicians, Psychiatrists and General Practitioners CFS Report. the editor of the Lancet, Dr Richard Horton wrote
"Psychiatry has won the day for now... we believe the report was haphazardly set up, biased and inconclusive, and of little help to patients or their physicians"

The report was widely condemned.

Six years later, these 1996 Lancet editorial comments are highly applicable to the 2002 RACP Guidelines.

In the single initiative directed towards their improved medical care, people with CFS have been betrayed by a process which has seriously failed. In ignoring consumer concerns the Guidelines negate the ideals of cooperative therapeutic partnerships in care.

Publication of the Guidelines will represent the greatest disservice, perpetuating serious harm and distress to people who already suffer from a serious chronic biological illness.

The Foundation therefore requests the RACP withdraw publication and dissemination of the Guidelines in the interests of fairness, objectivity and the quality standards of scientific endeavour which the RACP represents.

Christine Hunter
for Michael M. Barratt, MB. BS (Syd)., FRCPA
Annette C. Leggo, BSc.
Margot McKay, BA (Psych), Dip Law, Barrister, MPRIA, MAICD
Simon R. Molesworth AM, QC, BA, LLB, FEIA, FAICD, FAIM, FVPELA, Hon. FRAPI
Board of Directors
Alison Hunter Memorial Foundation

1. Dr Robert Loblay — CFS Clinical Practice Guidelines 25 February 1997
2. Dr Robert Loblay — CFS Clinical Practice Guidelines 25 February 1997
3. Dr J Best — correspondence to C Hunter 17 February 1999
4. Komaroff A.L. — The Biology of Chronic Fatigue Syndrome, AMJ Med.2000;108:169-171

CC: Dr Martin B Van Der Weyden, Editor, The Medical Journal of Australia

Further reading: Appendix 1—Failures of Process