RACP Guidelines for CFS

Cover Letter

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 -

"It is unconscionable that patients who are very ill have to search for information and potential treatments and try to educate the very people whose job it is to protect them... we've been subject to deceit, denial and dissembling... Patients are still suffering mainly due to their inability to access adequate medical care and social support. Others are dying or committing suicide - not from fatigue or stress or depression or deconditioning but from negligence and apathy".

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

"I have evaluated 2,500 cases - at best (CFS) is a prolonged post viral syndrome with slow recovery. At worst a nightmare of increasing disability with both physical and neuro-cognitive components. The worst cases have both an MS like and an AIDS like clinical appearance. We have lost five cases in the last six months. The most difficult thing to treat is the pain".

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:

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

References

1

Wallis A.L. - An Investigation Into An Unusual Disease Seen In Epidemic And Sporadic Form In A General Practice In Cumberland In 1955 And Subsequent Years. MD Thesis 1987 University of Edinburgh

Ramsay, A.M. - Myalgic Encephalomyelitis and Post Viral Fatigue States. The Saga of Royal Free disease. Gower Medical Publishing London for the ME Association

Acheson E.D. - The Clinical Syndrome Variously called Benign Myalgic Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia. AmJMed.1959:26:569-595

Symposium, Council of The Royal Society of Medicine, London. 7 April 1978 "Epidemic neuromyasthenia" 1934-1977:current approaches Postgraduate Medical Journal (Nov. 1978) 54:731-736

2

Speight N. - Paediatrician, Abstract : Problems facing families with children with ME/CFS in their dealings with medical professionals. Fatigue 2000 Conference 23-24 April 1999 National ME Centre, Essex Neurosciences Unit and South Bank University

3

Brownie J. - 1468/93. Reasons for Judgment, Equity Division, Supreme Court of New South Wales.

4

Freckleton I. - Australian Judicial Perspectives on Expert Evidence. Australian Institute of Judicial Administration Inc.

5

McLaughlin J. - Consumer Address : CFS Interagency Coordinating Committee USA, 29 April 1998

6

Cheney P. MD PhD, Researcher Clinician : Testimony - Scientific Advisory Committee US Food and Drug Administration, 18 February 1993

7

Lloyd A.R., Hickie I.B., Loblay R.H. - Illness or disease? The case of chronic fatigue syndrome. MedJAust 2000; 172:471-472

8

Lee S, Yu H., Wing Y.K., et al - Psychiatric morbidity and illness experience of primary care patients with chronic fatigue in Hong Kong. AmJPsychiatry 2000;157:380-384

9

Hickie I.B., Hooker A.W., Hadzi-Pavlovic D., Bennett B., Wilson A., Lloyd A. - Fatigue in selected primary care settings: Sociodemographic and psychiatric correlates. MJA Vol. 164, 20 May 1996:585-588

Van der Linden G., Chalder T., Hickie I.B., Koschera A., Shaw P., Wessely S. - Fatigue and psychiatric disorder : different or the same? Psychological Medicine 1999, 29, 863-868

Hickie I., Koschera A., Hadzi-Pavlovic D., Bennett B., Lloyd A. - The temporal stability and co morbidity of prolonged fatigue: a longitudinal study in primary care. Psychological Medicine 1999, 29, 855-861

10

Komaroff A.L. - The Biology of Chronic Fatigue Syndrome. AmJMed.2000; 108:169-171

11

Dwyer J. - Treatment for obsessive disorders. Health, Innerwestern Suburbs Courier, May 8 2000

12

Rigas B., Feretis C., et al, John Lykoudis - An unappreciated discoverer of the cause and treatment of peptic ulcer disease. Lancet 1999;354:1634-1635

13

Hermon-Taylor J. - Crohn's disease research on mycobacterium avium subsp. Paratuberculosis. St. George Med. School London

14

NengJMed.;342:620-625

15

Bolte E. - Autism & Clostridium tetani Medical Hypotheses (1998) 51, 133-144

16

Boughton C.R. - Viruses and chronic fatigue syndrome. ALUCA Conference 9 Nov. 1998

17

Wakefield D. - Research - Chronic fatigue syndrome. The fatigue plague. UNSW Graduate Review, Winter/Spring 1999, p12

18

Chaudhuri A., Watson W., Pearn J., Behan P. - The symptoms of chronic fatigue syndrome are related to abnormal ion channel function. Medical Hypotheses 2000;54(1) 59-63

Enclosures

7

Lloyd A.R., Hickie I.B., Loblay R.H. - Illness or disease? The case of chronic fatigue syndrome. MedJAust 2000; 172:471-472

8

Lee S, Yu H., Wing Y.K., et al - Psychiatric morbidity and illness experience of primary care patients with chronic fatigue in Hong Kong. AmJPsychiatry 2000;157:380-384

10

Komaroff A.L. - The Biology of Chronic Fatigue Syndrome. AmJMed.2000; 108:169-171

16

Boughton C.R. - Viruses and chronic fatigue syndrome. ALUCA Conference 9 Nov. 1998

17

Wakefield D. - Research - Chronic fatigue syndrome. The fatigue plague. UNSW Graduate Review, Winter/Spring 1999, p12

18

Chaudhuri A., Watson W., Pearn J., Behan P. - The symptoms of chronic fatigue syndrome are related to abnormal ion channel function. Medical Hypotheses 2000;54(1) 59-63

CDC FY 2000 Overview of the Chronic Fatigue Syndrome Program

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Phone/Fax +61 2 9958 6285

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