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Royal Australian College of Physicans' Guidelines

Publication
The CFS Guidelines story - background on the development of the guidelines:
the Working Group, and the community's response
Reaction and correspondence
Comments on draft Guidelines
Background and reference documents

By Consumer Health Forum (Australia) Representative, Craig Ellis:
An Assessment of the CFS Clinical Practice Guidelines (May 2002)
Consumer rep's reports (1997-98)
CFS Health Consumer Perspective (Dec 1997)

RACP Guidelines

The Guidelines were published in a special supplement to the 6 May 2002 edition (Vol 176) of the Medical Journal of Australia. They are available online at the eMJA website as HTML or PDF. There is also a PDF download available here from the Royal Australasian College of Physicians, plus related material.

See The CFS Guidelines story on this website for background on the controversy surrounding the development of the Guidelines.

Reaction

Official response of the ACT ME-CFS Society Inc.

Guidelines related material on the Alison Hunter Memorial Foundation's website includes:

• "First do no harm" - letter to the President of the RACP asking for the Guidelines to be withdrawn. The letter compared the Guidelines unfavorably to the UK Report and highlighted the document's many serious flaws. "No amount of superficial expressions of empathy written into the Guidelines can mask the insidious psychological/psychiatric misattributions which pervade the document ... "
• Failures of process detailing how the development of the Guidelines was botched.
• Responses from medical practitioners, educators and consumer advocates.

Tom McGlynn's comments.

Sick and tired patients in uproar - Sydney Morning Herald, 29 April 2002.

Time magazine article Neurotic or Misunderstood? - quotes Simon Molesworth, president of the ME/Chronic Fatigue Syndrome Association of Australia, and ("leading villain in the eyes of CFS lobbyists") Ian Hickie. - May 2002

Health report 6 May 2002 (ABC radio): Norman Swann interviews Guidelines author Dr Robert Loblay - transcript. Dr Loblay's statement that "we haven’t identified any underlying pathological changes in the tissues or the blood" reveals his lack of familiarity with current research (eg RNaseL ... a brief one-sentence reference to this research has been added to the final version of the text at figure 1.4).

AAP story (The Australian etc) May 5, 2002 : Chronic fatigue 'not a disease' by Judy Skatssoon text

Articles by Julie Robotham, Sydney Morning Herald, 4 May 2002:

• Riddle of the Quiet Killer - ; "People with chronic fatigue syndrome have been angered by new treatment guidelines that suggest their illness is mainly psychological" - tells the story of Alison Hunter who died aged 19, and other severely affected patients.
• Brain link to Fatigue Syndrome - about research on cerebral blood flow in CFS at Adelaide's Queen Elizabeth Hospital, and Dr Richard Burnet's studies of gut function at the Royal Adelaide Hospital.

More media reports on this site

More media reports on the AHMF site.

Contents

Correspondence with the MJA

Simon Molesworth, National President of the ME/Chronic Fatigue Syndrome Association of Australia, wrote asking the Editor of the MJA not to publish the Guidelines on the grounds that they would result in "misdiagnosis, inappropriate and inadequate medical care and the promotion of widespread misconceptions" about CFS:

Consumers and many practising CFS clinicians feel strongly that there has been a continued resistance on behalf of the Working Group to respond to their major, well-reasoned and constructive criticisms of two drafts of the Guidelines.

During the more than five-year guideline development period, much new research has been published, providing more evidence of the biological processes occurring in CFS and against the relevance of a psychiatric-psychological approach to the illness. Yet the text of the Guidelines has remained largely unchanged since the first, much-criticised 1997 draft.

Read the correspondence between Simon Molesworth and the Editor of the MJA on the SA ME/CFS Society's website.

After the publication of the Guidelines, Simon Molesworth and Richard Larkins - the Past President of the RACP - co-authored a letter to the Medical Journal of Australia reminding their medical colleagues that the Guidelines are not the final word on CFS. More research is needed, they said, 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 (Med J Aust 2002; 177: 51-52).

There were predictable responses by psychiatrists Ian B Hickie and James D Hundertmark, and surgeon Donald D Beard, leading to a further reply by Larkins and Molesworth.

Comments by webmaster on the MJA correspondence.

Contents

Comments on draft Guidelines

• The Alison Hunter Memorial Foundation's submission; also Betrayal of the Severely Ill? - letter from AHMF to the RACP CFS Guidelines Working Group, with 16 background documents, including supporting letters from ME/CFS societies around Australia.
• The submission of the ACT ME/CFS Society Inc. " ... of the studies that have been reviewed by these guidelines, there appears to be very heavy emphasis on studies undertaken by one particular research group."
• Mette Andersen's submission - Mette has medical qualifications and experience, and points out among other things that the recommendations on exercise could be dangerous.
• Martin Butler's submission - "The fundamental error of focusing on CFS as a fatigue state to link CFS with psychiatric diagnosis is an insupportable construct ... This report is outrageous and a danger to CFS patients."
• Dr Mark Donohoe's submission - this prominent medical practitioner says the draft Guidelines are "inadequate, often misleading, and do not address the very aspects of primary care in which they purport to provide expertise". Because of the selective quoting of scientific references, and the omission of much relevant evidence, he also characterises the draft Guidelines as "a misrepresentation of the available data [which] suggests either incompetence or fraud".
• Peter de Jager's submission highlights seven major problems with the draft. One of these is a simple logical error - the "causation fallacy" that makes people think that because two situations or events are connected, one caused the other.
• Rose-Marie Johnson's submission makes the same point and quotes from the book "How to Lie with Statistics" by Darrell Huff.
• Dr. Andriya Martinovic's submission: "the conclusions/inferences drawn by the draft guidelines in various instances are unsupportable and/or contradicted by the literature that the draft guidelines claims supports those conclusions." He gives examples, including the studies claimed as evidence supporting the use of Cognitive Behavioural Therapy for CFS.
• Tom McGlynn's submission - "There is much easily demonstrable bias in the scientific references selected (and not selected) for the Draft's literature review and in the way in which some of those articles are selectively cited to support that bias. Such bias is unacceptable in any document purporting to be an objective review for medical practitioners ..."
• Ted Shaw's submission: "Instead of producing a set of Guidelines that would lead to a better understanding and insight into the disease, the Working Group has published a document that will increase the misconceptions about CFS, making it more difficult to obtain understanding from the medical community, families and the general public."
• My submission - "many CFS sufferers are in great pain. I am very disappointed that the Guidelines don’t address this issue." (Oh, and I noticed the logical fallacy too: Post hoc, ergo propter hoc, my teacher called it.)
• Read or download Jim Oakley's submission at the Victoria CFS/ME Society's website. Jim is a past president of the CFS Society of Victoria. Among other things, Jim points out that the Working Group took hardly any notice of the consumer input that they themselves had invited.

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Background and reference documents

• The CFS Guidelines story on this website gives an account of events up to the release of the final document.
• A Critique of the Sydney Researchers - This article, written by Ted Shaw in 1996-97, is essential reading for anyone wishing to understand the background to the Draft Guidelines, and why they turned out as they did.
• Illness or disease? The case of chronic fatigue syndrome, a Medical Journal of Australia editorial (15 May 2000) by Hickie, Loblay and Lloyd of the Guidelines working group. The authors suggest that "Broader paradigms, incorporating other cultural and psychosocial perspectives, are crucial" in dealing with CFS. Both patients and doctors should stop arguing about whether CFS is a physical or psychological illness, and take a lesson from patients in Hong Kong who have accepted that "while they were clearly unwell, the potential causes of that suffering could lie across a broad domain of personal, social or medical factors".
• Abstracts of other papers by the Sydney researchers.
• The York Report (2001) The University of York's Centre for Reviews and Dissemination was funded by the British Department of Health to conduct a review of "The effectiveness of interventions used in the treatment/management of chronic fatigue syndrome/myalgic encephalomyelitis (ME) in adults and children."   They looked at 43 research studies testing treatments for CFS, and found the only interventions which showed what they considered "promising results" were cognitive behavioural therapy and graded exercise therapy.  However the report points out that many studies had methodological inadequacies, and it was difficult to compare or extrapolate from results.
• Royal Colleges report UK (Oct 96) written by a Task Force of the Royal Colleges of Physicians, Psychiatrists and General Practitioners. (This has now been superseded by the publication in January 2002 of the very different Report of the Working Party on CFS/ME to the Chief Medical Officer for England and Wales - More information.)
• Chronic Fatigue and Chronic Fatigue Syndrome: A practical self help guide - from the The Chronic Fatigue Syndrome Research and Treatment Unit at Kings College Hospital, London. Written by psychiatrist Professor Simon Wessley and colleagues, focuses on CBT and graduated exercise therapy. Full of typos.
• CFS case definition (Fukuda et al, including I Hickie) from the USA Government Centres for Disease Control CFS Home Page.
• Appraisal Instrument for Clinical Practice Guidelines - Cluzeau et al, from the UK.  " ... designed to assess the extent to which known predictors of good guidelines have been addressed during their development".
• Clinical Practice Guidelines - a guide for primary providers; identifies what makes a good guideline, and explains evidence based medicine.  A short article with lots of links for those who want to read further. From Primary Care Clinical Practice Guidelines the personal website of a doctor at the University of California at San Francisco.

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