AHMF: Foundation submission to the RACP

Submission to the Royal Australasian College of Physicians CFS Clinical Guidelines Review Committee

Authors: Christine Hunter, Annette Leggo, Anne Gotsis and Maureen Stephenson

Subject: Clinical Practice Guidelines on Chronic Fatigue Syndrome

This submission is forwarded in terms of the most recent listings provided by the Review Committee's Project Officer. As the consumer group forwarding this submission uses ME/CFS in its literature, this term is used throughout this submission. A list of the compilers of this document and consumers supporting its submission is provided at the end of the document.

The submission has been prepared by reference to:

extensive scientific literature searches and updates
direct contact with international researchers and clinicians
the experiences of people with ME/CFS documented over more than a decade.

We trust that this submission will assist the Review Committee in reaching a balanced and informed view of the disease in all its aspects including chronicity and severity. We believe that a lack of incorporation of the issues raised in this submission within the Clinical Practice Guidelines will seriously exacerbate the current grave outlook for people with ME/CFS. Copyright 1997

Copies may be made of material from this submission without prior reference to the writers provided that:

the purpose is to raise awareness of ME/CFS issues
the source is acknowledged.

CONTENTS

SUMMARY
1.0 INTRODUCTION
2.0 SPECTRUM AND PREVALENCE OF CHRONIC FATIGUE IN THE COMMUNITY
3.0 INVESTIGATION OF PEOPLE PRESENTING WITH CHRONIC FATIGUE
4.0 DIAGNOSTIC CRITERIA FOR ME/CFS
5.0 CLINICAL EVALUATION OF PEOPLE WITH ME/CFS
6.0 MANAGEMENT OF PEOPLE WITH ME/CFS
7.0 ROLE OF GENERAL PRACTIONERS, SPECIALISTS AND OTHER HEALTH PROFESSIONALS
8.0 NEEDS OF SPECIAL SUBGROUPS - CHILDREN AND ADOLESCENTS
9.0 COMORBIDITY
10.0 SUICIDE
11.0 ROLE OF COMMUNITY SERVICES
12.0 INCOME SECURITY - SOCIAL SECURITY AND OTHER ENTITLEMENTS
13.0 RESEARCH
14.0 RECOMMENDATIONS
15.0 CONSUMER PERSPECTIVES
16.0 ACKNOWLEDGMENTS
LIST OF SUBMITTERS
CASE STUDIES

Summary

Members of The Working Group have the medical responsibility to formulate M.E./C.F.S. Clinical Practice Guidelines which can withstand the scrutiny of review and outcomes-based assessment in the months and years ahead as research data grows and the natural course of the disease is recorded.
We assert that:
1. As stated by Assistant Secretary of Health, Dr Philip Lee, U.S. Chair of the Chronic Fatigue Syndrome Co-ordinating Committee (C.F.S.C.C.), 13 September 1996:

C.F.S. is a serious legitimate diagnosis;
it is not some sort of psychological problem;
the spectrum of disease extends to the wheelchair bound;
recovery is slow and uncertain for many;
scientists need to learn more about reactivation of latent viruses and molecular interactions between the brain and immune system;
C.F.S. is devastating to many who have it.

2. Medical ignorance compounds the serious impact of the disease for people with M.E./C.F.S.
3. Dismissive attitudes, gratuitous psychological and psychiatric interpretation and general lack of awareness and compassion for the situation of people with M.E./C.F.S. are unacceptable.
4. Prescriptive clinical management guidelines cannot be imposed when:

pathophysiological processes are not yet understood;
there has been no long term monitoring;
outcomes of present strategies have not been evaluated.

5. There is mounting evidence that:

aggressive rest and intervention, particularly in the early stage, may have a crucial influence on duration, severity and recovery;
each person with M.E./C.F.S. (child or adult) has to find his/her own safe limits and must not have activity, mental or physical, prescribed by others;
mental activity can be every bit as detrimental as physical exertion.

6. Tasks demanding new memory are more sensitive to impaired central nervous system function than well practised tasks, which are least vulnerable. This impacts most seriously on education (the young) and specific occupations.
7. People with gradual onset who adapt to declining health are more vulnerable to misdiagnosis, e.g. depression, school phobia, anorexia nervosa.
8. Management of severely ill M.E./C.F.S. patients presents enormous difficulties and responsibilities - symptoms of intractable pain, paralysis, paresis, seizure, cardiac problems, incontinence, paralytic ileus and overwhelming infections. Such features are recognised by a few clinicians at "the coalface", but the medical community on the whole fails to recognise and address the problems of those most in need.
9. There is no long term monitoring and no register for the disease. Fatalities are always ascribed to the terminal event; the earlier M.E./C.F.S. diagnosis is ignored. We strongly question:
10. The continued use of the name "Chronic Fatigue Syndrome" which reflects a lack of sensitivity to the issues for consumers. Its use perpetuates trivialisation, invites ridicule and contempt and negates attempts to gain serious recognition. U.S. Senate moves to address these concerns are welcomed.
11. The interpretations of Wilson, Hickie, Lloyd et al., B.M.J. 19 March 1994, 308: 756 - 759 that a strong belief in the physical nature of the disease predicts poor outcome. We propose the above authors have merely demonstrated that those who hold the strongest conviction in the organic nature of the illness are the worst affected because the more severe the illness the stronger the conviction.
12. The interpretations of Hickie, Lloyd et al., Psychol. Med. 1995, 25: 925 - 935 that the subclass II group represent somatoform disorder because of the degree of severity and atypical bizarre symptoms, which include shortness of breath with minor activity, repeated fevers and sweats, and recurrent diarrhoea. Earlier, however, these same authors expressed concerns about such speculation in correspondence to B.J. of Psychiatry 1990, 157, p 1449 where they state 'this is at best a highly speculative hypothesis', reminding that such patients with no known disorder are often mislabelled by psychiatrists as somatisers until the actual nature of the disorder is later revealed. Dr A. Lloyd in Oct. 1996 at the C.F.S Conference, San Francisco, U.S. said when discussing this atypical symptom cluster group II 'we may be looking at the severe end of the disease'. The gravity of these issues is demonstrated by the fact that those severely affected and in desperate need can be inappropriately removed to state and psychiatric care. The viewpoint of patients with M.E./C.F.S. has been marginalised and often energetically opposed, yet the patients' experience of the disease provides the richest history.

1.0 Introduction

"Truth scarce ever yet carried it by vote anywhere at its first appearance." - John Locke, 1632-1704

1.1 It is acknowledged that a review of ME/CFS within the medical arena is timely. The Review has the potential to improve the quality of care for ME/CFS patients by:

providing accurate and up-to-date information for doctors, specialists and other health professionals.
forging a positive and productive relationship between ME/CFS patients and the medical profession.
providing an opportunity for the medical profession and ME/CFS patients and their families/carers to work collaboratively.
assisting in the provision of services responsive to the needs of ME/CFS patients and their families/carers.
acknowledging the complexities and unresolved questions regarding the disease.
addressing the misconceptions currently rife within the medical profession with regard to ME/CFS.
influencing other professionals and service providers who come in contact with ME/CFS patients, e.g. teachers, Social Security staff and community workers.

1.2 Wherever ignorance of ME/CFS manifests itself as prejudice, disbelief and even contempt, the outcomes of this review could have important consequences in relation to:

standards of care
distress and suffering of ME/CFS patients
employment
education
families/relationships
disability entitlements.

2.0 Spectrum and Prevalence of Chronic Fatigue in the Community

"Fatigue is both a normal and a pathological feature of everyday life." - Byron M. Hyde, MD.

2.1 The blurring of a distinction between chronic fatigue and Chronic Fatigue Syndrome is confusing. Several questions arise:

Is the Review Committee's charter to consider the spectrum and prevalence of chronic fatigue or of Chronic Fatigue Syndrome?
Does the Review Committee distinguish between the terms?

2.2 The Review Committee is requested to address the problems resulting from the medical profession's reliance on the term "fatigue" in relation to ME/CFS for the following reasons:

The term "fatigue" cannot be defined in scientific terms, and has been endowed, inappropriately, with medical significance. Refer "Is a Fatigue Test Possible?" Musico, B. British Journal of Psychology 1921, 21, 31-46, A Report to the Industrial Fatigue Board.
It is not clear, precisely, what is meant by the term "fatigue". Refer "Fatigue and Fatiguability" British Journal of Psychiatry 1988, 153, 1-5. Lack of strategies to objectively measure fatigue further illustrates the inappropriateness of the term as a medical descriptor.
Fatigue is not unique to ME/CFS, but is a central feature of many major medical and psychiatric diseases.
Fatigue is an inappropriate term for the extreme exhaustion of ME/CFS and obscures the serious and disabling nature of other more significant symptoms e.g. neurological and gastro-intestinal disorder and intractable pain.

2.3 The blurring of terminology raises further issues relevant to prevalence. The use of certain terms, e.g. chronic fatigue prolonged fatigue/neurasthenia syndromes prolonged fatigue states chronic fatigue syndrome can be interpreted as scientific imprecision or a deliberate confusion of terminology. Hickie et al., in a study funded by the National Health & Medical Research Council to study the prevalence and sociodemographics of CFS among patients visiting general practitioners, illustrate this problem ("Fatigue in Selected Primary Case Settings: Sociodemographic and Psychiatric Correlates" MJA 1996, 164, 585 - 588).
2.4 Understanding the term "chronic" is crucial to an understanding of the illness. Melvin Ramsay, FRCP, spoke of "alarming chronicity" in relation to the Royal Free Hospital outbreak.
2.5 It must be recognised that any statistics relating to the prevalence of ME/CFS in the community are merely subjective estimates, due to:

the fact that ME/CFS is not a notifiable disease
the absence of a diagnostic test
the many ME/CFS patients who drop out of medical statistics simply by not returning to medical practitioners whose attitude(s) proved discouraging or destructive. This sense of abandonment could impact on statistics, making them inaccurate.

2.6 It is of concern to patient organisations worldwide that doctors report more recoveries than do patients.
2.7 As databases age, the average length of the illness increases. (Physicians' estimates, in many instances, increase according to their years in practice). Revisiting documented outbreaks decades ago reveals numbers of people who have never recovered.

3.0 Investigation of People Presenting with Chronic Fatigue

"The problem with fatigue is that it is neither specific, definable nor scientifically measurable. Also taking fatigue as the flagship symptom of a CNS disease removes the urgency of the fact that the majority of ME/CFS symptoms are in effect CNS symptoms." - Byron M. Hyde M.D.
"My G.P. referred me to a neurologist to exclude a possible MS diagnosis. He examined my reflexes, breathing and balance for a few minutes and then told me to sit down and said quite seriously that I was not physically ill in any way and should be seeing a psychiatrist rather than a medical doctor. I feel disadvantaged dealing with people who do not believe that I am sick. Being in pain and profoundly fatigued means I am in no condition to stand up for myself." - Female with ME/CFS age 19.
3.1 Again, the lack of distinction between chronic fatigue and Chronic Fatigue Syndrome is of concern.
3.2 Doctors investigating a possible ME/CFS patient need guidelines which acknowledge:

the need to avoid focusing on a single symptom e.g. fatigue
the difference in onset pattern
the complexity of ME/CFS
the variations between individuals, i.e. unlike many other illnesses (e.g. diabetes) there is no common and predictable pattern of symptoms.
the likelihood that patients will only highlight their most troublesome or most current symptom. This is especially the case with children and adolescents.
the unknowns relating to the disease.
the fact that some symptoms may need specialist investigation.

Continue to section 4