Myalgic Encephalopathy (ME) is the preferred term of the Alison Hunter Memorial Foundation
People with ME face enormous obstacles to access equitable health care.
Among the impediments over the past decade has been research which shifted emphasis to fatigue, fatigue states and chronic fatigue with scant regard for the myriad yet distinguishing neurological, autonomic, and gastrointestinal features of ME. Both the inadequacy of fatigue as a descriptor for the incapacitating post exertional malaise of ME, and the prevalence of fatigue as a common experience and complaint (eg driver fatigue, hiking fatigue, most disease states) compound the difficulties.
Semantics and biased attributions continue to deny the very ill, both child and adult, the right to care which addresses their acute and chronic medical needs, without fear.
The Countess of Mar in the House of Lords, United Kingdom (1) has recorded the disproportionate suffering of the young with ME, when serious physical symptoms are dismissed with wide ranging psychiatric diagnoses. As a consequence families become embroiled in medical disputes over punitive treatment regimes. Child protection orders can ensue when the judiciary are limited in their ability to evaluate expert testimonies (2). In some cases young people have been removed from their families to foster care for periods of up to five years.
The recent editorial by Martin Van Der Weyden in the Medical Journal of Australia (MJA) (3) explored the important characteristics of the "distinguished clinician". One of the foremost is "an absence of arrogance (the transmitted aura of infallibility or overbearing manner or attitude)" epitomised by Dr Francis Peabody (1927) who wrote:
"One of the essential qualities of the clinician is interest in humanity, for the secret of the care of the patient is caring for the patient."
These qualities shine in the seminal works of the "distinguished clinicians" Melvin Ramsey (4), John Richardson (5), and Andrew Wallis (6) with their meticulous and compassionate documentation of "the clinical identity of the myalgic encephalomyelitis syndrome".
Gross deficiencies in the scientific evidence have been asserted in the joint statement on behalf of the Royal Australasian College of Physicians and the ME Chronic Fatigue Syndrome Association of Australia published in the MJA (7)
"More research is required to understand the biological mechanisms involved and to clarify the role that genetic, environmental and infectious agents might have in the aetiology and pathophysiology of this complex and debilitating illness."
It will take priority funding initiatives and time for scientific advances to impact on therapies specific to the many potential disease states of differing aetiologies encompassed under the umbrella of ME. The consequent delays to treatment for people with ME reinforce the vital role of the "distinguished clinician".
The 2001 Proceedings herald exciting international scientific advances, and will assist the medical practitioner to improve differential diagnosis and clinical care.
Importantly, the Proceedings affirm hope for people with ME.
Christine Hunter, Annette Leggo
Alison Hunter Memorial Foundation
Ellie Stein MD FRCP (C)
Chair, Scientific Programme Committee
- 16 April 2002, House of Lords Hansard text (220416–19) Column 894–896.
- Freckleton I. (1999) Australian Judicial Perspectives on Expert Evidence. Australian Institute of Judicial Administration Inc.
- Van Der Weyden M. From The Editor's Desk, The Distinguished Clinician. Med J Aust 2000; 172:409.
- Ramsay A.M. (1988) Myalgic Encephalomyelitis and Post Viral Fatigue States. The Saga of Royal Free Disease. Gower Medical Publishing, London, for the ME Association.
- Richardson J. (1992) M.E., The Epidemiological and Clinical Observations of a Rural Practitioner. The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome p85–92. The Nightingale Research Foundation, Byron M Hyde MD.
- Wallis A.L. An investigation into an usual disease seen in epidemic and sporadic form in a general practice in Cumberland in 1955 and subsequent years. MD Thesis 1957 University of Edinburgh.
- Larkins R.G., Molesworth S.R. Chronic fatigue syndrome clinical practice guidelines. Med J Aust 2002:177(1):151–52.
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