Advocacy

2 December 2002

By invitation–

Address to Federal Government Policy Committee of Health and Aging
Parliament House,
Canberra, Australia

Guest Speaker–Christine Hunter, on behalf of
Alison Hunter Memorial Foundation
ME/Chronic Fatigue Syndrome Association of Australia

"Truth is the child of time, not of authority" – Bertold Brecht

The Alison Hunter Memorial Foundation was formally established in 1998 through the initiative of the Public Interest Advocacy Centre.

Myalgic encephalomyelitis has been formally classified by the World Health Organisation WHO as a neurological disorder in the International Classification of Diseases ICD since 1969. It remains classified in the current ICD 10, G 93.3.

The shift to the name "chronic fatigue syndrome" (CFS) invites the dismissal, contempt and medical neglect so often endured by people with ME/CFS. The emphasis of "fatigue" (weariness) at the expense of the cardinal neurological, gastrointestinal, cardiac and myoarthralgic features trivialises the substantial disability of ME.

I briefly relate our daughter Alison's experience of the health system to illustrate the problems faced by the severely ill.

In the Sydney Morning Herald News Review 4-5 May 2002, Professor James Isbister, Head of Haematology, Royal North Shore Hospital, Sydney, described our daughter as "a brilliant girl, intellectually very vibrant". He continued "to be honest I felt helpless towards the end. On many occasions I was extremely embarrassed about the way she was treated by the system. A lot of terrible things Alison went through were doctors projecting their own fears and inadequacies. How anyone could not think she had a major medical illness is beyond me". Alison, he said was "like someone going through a concentration camp, suffering terrible physical distress compounded by insults and inhumanity."

Professor Isbister lamented "the edifice of medicine that cannot acknowledge things it does not understand". Six years after her death, those words were the first frank admission of Alison's cruel treatment by the health system. Such honesty may have provided some small comfort to her during her life.

In 1986 at the age of nine, Alison contracted a "severe virus" with encephalitic features. Six months later, with little sustainable improvement, she was given the diagnosis of postviral syndrome. A name with no treatment, no prognosis. Overriding the myriad of her symptoms was a punishing intractable headache. Alison's suffering tormented us all.

Over time, despite several lengthy episodes of remission, any further infection led to serious relapse. At the onset Alison was often reminded by eminent experts we consulted that it was her misfortune to have something so poorly understood because "in ten years we will have all the answers." Ten years later Alison's condition was critical. And still there were no answers. Although treatment with chemotherapy in the last weeks of her life eased the throat ulcerations which had plagued her for the previous two years, Alison died in March 1996.

US author Laura Hillenbrand articulated the common experience of those with severe ME, which she contracted from food poisoning.

"I lost 22 pounds in the first month – I lost all my vitality. My hair started falling out. I got sores all over my mouth and throat. I was running fevers all the time. I've spent 6 of the last 14 years completely bedridden. For many hours a day I can't move my arms or legs. I can't sit up, get myself to the bathroom. I can't talk to anyone. All I can do is move my eyeballs. I lie there and hope I can keep breathing."

Such severe ME does not discriminate.

The accounts of young people who share Hillenbrand's experience of ME can defy belief.

When faced with severe cases, doctors search for psychiatric labels such as pervasive refusal syndrome, Munchausen's syndrome by proxy, conversion or somatisation disorder, or abnormal illness behaviour. Enforced exercise and punitive behavioural regimes draw families into dispute with hospital staff. In the worst cases young people have been removed from the care of their parents by the courts, and confined to psychiatric units or placed in foster care. Paediatrician Dr Nigel Speight, a member of the UK Chief Medical Officer's (CMO) Reference Group for ME refers to the mistreatment of these severely affected young people as "child abuse by health professionals".

In Australia this abuse is well illustrated by the cruel treatment forced upon K aged 13.

Despite a confirmed independent diagnosis of severe ME/CFS by a leading endocrinologist /researcher in ME/CFS, K was detained in a locked psychiatric unit against her wishes and those of her family. A "normalization plan" was instigated to "create behavioural challenges to K beliefs". "If K is continuing to complain, scream, cry, whine etc she is to remain in the chair until she is calm. K does not require rests. At this stage bed rest through the day will cease". K was removed to foster care for 5 years.

Many such medical nightmares could be told of families desperate for medical help but constrained by fear. A study documenting family experiences of the health system has commenced at the University of Western Sydney.

What has been done for people with ME/CFS in Australia?

People with ME/CFS have been shamefully neglected.

For the past decade initiatives to bring consensus and appropriate care to people with ME/CFS have failed through inaction, denial and misattributions.

The medical politics are truly awful. One struggles to find another illness where those responsible for care in so many instances display such arrogant disregard, spite and cruelty towards the patients.

The history of the sparse initiatives towards ME/CFS speaks volumes.

1993 The "Watson" Chronic Fatigue Syndrome Review, instigated by the then Federal Health Minister recommended a national consensus conference of key agencies, researchers, clinicians and representative consumers.
This recommendation was ignored by the Liberal Government.
1994 The Royal Australasian College of Physicians RACP and the Royal Australian College of General Practice (RACGP) surveys of members revealed "significant areas of ignorance, misconceptions and prejudice".
1995 The RACP proposed the development of clinical practice guidelines for CFS.
1996 The Commonwealth Department of Health and Aged Care (Medicare Branch) provided an initial grant of $130,000 (later extended to $200,000) to the RACP. The RACP committed to following procedures outlined in the National Health and Medical Research Council NHMRC Guidelines for the Development and Implementation of Clinical Practice Guidelines.
1998 Due date for the release of CFS Clinical Guidelines was May 1998.
2002 The CFS Clinical Guidelines were published four years late in May 2002.

The Guidelines were strenuously rejected by all state consumer societies and the ME Chronic Fatigue Syndrome Association of Australia. Many Australian and international researchers and clinicians voiced concerns about the bias of the document.

Key consumer objections were:

The Guidelines process did not conform to NHMRC Guidelines and NHMRC accreditation did not proceed.

Inexcusably the RACP Guidelines Working Group failed to address the severely affected, admitting "they have not been included because they have never been studied".

The NHMRC has provided the following details of research funding for CFS

1992 $213,000 over 3 years Chief Investigator- Ian Hickie
Study Title "Is neurasthenia (chronic fatigue) prevalent in Primary Care"
1994 $270,740 Chief Investigator- Ian Hickie
Study Title "The genetic aetiology of chronic fatigue and related disorders"
2001 $500,000 over 5 years Chief Investigator- Ian Hickie
Study Title "A prospective study of the psychiatric and medical Characteristics of post-infectious fatigue and chronic fatigue syndrome"
2001 $360,000 over 3 years Chief Investigator- Andrew Lloyd
Study title "Microbiological and immunological determinants of prolonged illness following Q fever"

It should be noted that the 1992 and 1994 studies relate to chronic fatigue, NOT chronic fatigue syndrome. The NHMRC has failed to distinguish chronic fatigue from chronic fatigue syndrome both in correspondence and advice to the Health Minister (Hansard 10.9.96).

Does the NHMRC not differentiate between chronic fatigue and the neurological disease ME/CFS which has defined CDC diagnostic criteria?

People with ME/CFS are held hostage to research which blurs terminology (chronic fatigue, chronic fatigue syndrome, medically unexplained physical symptoms, prolonged fatigue syndromes), uses broadly defined patient populations, confers causality to associations (prolonged illness is maintained by a strongly held belief in the physical nature of the illness) and draws biased interpretations (a greater number of symptoms, experienced more severely suggests somatoform disorder).

The current fairly amorphous definitions of ME/CFS lead to research outcomes which are unreliable. Scientifically rigorous research of tight subject cohorts defined by detailed history and the particular symptoms to be examined would more reliably progress medical knowledge to assist people with ME/CFS.

The NHMRC Strategic Research Development Committee SRDC has stated it "would encourage the development of a consensus around a research definition of CFS in Australia with clear and justifiable inclusion/exclusion criteria and subgrouping categories." Until this is done, ME/CFS will not be considered by the SRDC for targeted funding.

The biological basis of ME/CFS can no longer be ignored. There is now considerable pathophysiological evidence which includes dysregulation of antiviral pathways, altered brain perfusion, orthostatic intolerance, oxidative stress, and endothelial dysregulation. See http://www.meresearch.org.uk.

We need an urgent Forum of researchers, clinicians, health authorities and key consumer representatives to examine the barriers to clinical care and strategic research development funding for ME/CFS.

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Alison Hunter Memorial Foundation
PO Box 6132 North Sydney 2059 Australia
Phone/Fax +61 2 9958 6285

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