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Australian Parliamentary CFS/ME Reports
1997
Australian House of Representatives Hansard
for 11th February 1997
QUESTIONS WITHOUT NOTICE
Chronic Fatigue Syndrome
Mrs SULLIVAN--
My question is addressed to the Minister for Health and Family Services. Is the minister aware of concerns that the National Health and Medical Research Council has not funded projects researching chronic fatigue syndrome from its medical research funds? Is he also aware of reports that one particular research project at the University of Newcastle may have developed a diagnostic test for CFS/ME in spite of this lack of support? Will the minister ask the NHMRC to amend its Classification of Disciplines to allow expert assessment of CFS/ME related projects? Will he also ensure that the NHMRC allocates funds for CFS/ME research projects?
Dr WOOLDRIDGE--
I thank the honourable member for her question. I note her interest in this and the representations she has made to me on the issue. I am aware that chronic fatigue syndrome has not been specifically funded for research grants under the NHMRC, and I am aware of the one particu lar project that she raises. I would say to her in reply that the National Health and Medical Research Council funds research on the basis of peer reviewed excellence and I would not want to see that changed. I certainly would not want to see a situation where research was funded on the basis of whoever had access to the minister or the minister's ear rather than what was the view of the scientific community.
That said, I do accept that the Classification of Disciplines is an area that can influence the peer review process. The NHMRC has received a request and is considering it for a special code for CFS/ME. In the end, that is its decision.
As to whether I will ensure the NHMRC provides funds for CFS/ME, I cannot do this specifically. But I can say that there is a new subcommittee of the NHMRC, which will be the Strategic Research Development Committee, and its purpose will be to advise on the need for targeted research into different health issues. This is something that it could properly address.
I understand the concern that people with CFS/ME have. I believe it is a genuine condition. It is made all the more difficult by the controversy that exists in the medical profession towards it. One thing government has done is contribute money to the Royal Australasian College of Physicians to develop guidelines into the most cost-effective treatments and the most clinically relevant methods of diagnosing and treating CFS/ME. Hopefully, if we can get some consensus on this, it will make it easier for people suffering to be accepted by the broader medical profession.
Australian Senate Hansard
for 25th February 1997
ADJOURNMENT
Euthanasia
(extract relating to CFS/ME presented here only)
Senator ABETZ (Tasmania)(6.56 p.m.)--
It is unthinkable that the National Health and Medical Research Council would fund such a survey out of its scarce resources. That the funding was given to euthanasia warriors is unforgivable. Are we to understand that the National Health and Medical Research Council's priority is the funding of these types of surveys when so much real research needs to be done on cancer, heart disease, strokes, multiple sclerosis, motor neurone disease, asthma, chronic fatigue syndrome and diabetes, just to name a few? The Australian people have a right to be sickened by those perverse priorities. I therefore call on the National Health and Medical Research Council to apply taxpayers' funds to real health issues in the future and not to political causes.
Australian House of Representatives Hansard
for 20th March 1997
ADJOURNMENT
Chronic Fatigue Syndrome
Mr TAYLOR (Groom)(5.42 p.m.)--
I am particularly pleased this evening that the honourable member for Bradfield (Dr Nelson) is in the chamber because I hope what I have to say he will agree with. I want to raise once again an issue not only as the member for Groom but also as the patron of a local community support group for those affected by myalgic encephalomyelitis or chronic fatigue syndrome, a potentially disabling and chronic condition affecting the immune and central nervous systems. There is no known single cause, although for many it may be a viral trigger. Some patients may have a sudden onset whilst for others it may be a slow and gradual process with no easily identifiable trigger. It can vary greatly in severity and duration. There is no specific diagnostic test. It is a complex illness and the list of symptoms can be extensive and profound in the more severe cases.
Current research suggests that a dysfunction of the immune system and the central nervous system is involved. The complexity of the illness means that the prognosis can be very difficult to predict. Some patients will make slow and gradual progress over several years to a full recovery. The majority will make variable progress with relapses which may be severe and prolonged. They may reach 70 to 80 per cent of their former functions.
Others remain severely disabled with little progress, needing a lot of help with their personal needs. A smaller percentage may deteriorate and be bed bound for much of the time. Peak incidence appears to be in the 20 to 40 years age group with a slight predominance to females and cases, unfortunately, involving young children are increasing. Clearly, it is a very real and for many a very debilitating illness. The consequences of living with ME for the sufferer, the carer and the whole family unit need to be understood.
I again take the opportunity to pay particular tribute to two pioneering local Toowoomba women, Joan Sheath and Lyn Wilson, both as sufferers and as support group leaders, without whose persistent efforts the community group would not be what it is today.
I am pleased also that the minister and the medical profession are now starting to do something substantive about the problem and its associated research. I also welcome Australia's active participation in International CFS/ME Awareness Day last year. Furthermore, I am pleased that a working group has been established under the auspices of the Royal Australasian College of Physicians with the aim of developing clinical practice guidelines for the assessment and for the treatment of CFS/ME.
The working group has received a grant from the Commonwealth Department of Health and Family Services to develop and distribute the guidelines to all medical practitioners in Australia. This is a landmark development in CFS/ME clinical management. The major task of the working group is to evaluate the rapidly growing body of scientific literature on CFS/ME and to make recommendations to medical practitioners and to the community.
The guidelines will provide a major resource for all concerned and will help to dispel much unfounded speculation and misinformation currently provided. A draft document is expected to be circulated to all interested parties for comment by the middle of 1997, and the finalised guidelines will be published as a supplement to the Medical Journal of Australia later this year.
In making my final comment, can I say that I hope that we have left behind unreasonable perceptions that this condition--that is, CFS/ME--is a condition of the mind rather than of the body. It is undoubtedly a debilitating illness which we cannot and must not ignore.
Australian Senate Hansard
for 13th May 1997
NOTICES OF MOTION
Chronic Fatigue Syndrome
Senator LEES (South Australia--Deputy Leader of the Australian Democrats)--
I give notice that, on the next day of sitting, I shall move:
That the Senate--
(a) notes:
- that the week beginning 11 May 1997 is International Chronic Fatigue Syndrome Awareness Week,
- recent research undertaken by the Prince Henry Hospital, Sydney, suggests that between 0.5 per cent and 1 per cent of the population suffers from myalgic encephalomyelitis/chronic fatigue syndrome (CFS/ME) and that the costs to the Australian community of CFS/ME may be as high as $100 million per annum,
- the growing international recognition that CFS/ME is a legitimate diagnosis, is not a psychological or psychiatric problem, and can be a devastating and debilitating condition, and
- the many unresolved questions regarding the causes, prevention and treatment of CFS/ME; and
(b) calls on the Commonwealth Government to provide additional funding for research into CFS/ME over and above any current funding allocated through the National Health and Medical Research Council.
Australian Senate Hansard
for 15th May 1997
PETITIONS
Chronic Fatigue Syndrome
Chronic Fatigue Syndrome International Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) Awareness Week 12--18 May 1997
To the Honourable, the President and Members of the Senate in the Parliament assembled.
The Petition of the undersigned demand the Australian Government recognise the impact of CFS/ME in the Australian Community and that:
- The NHMRC Category C Disciplines document be amended to include CFS/ME so that research projects into CFS/ME may be funded by the NHMRC.
- CFS/ME research applications be examined by expert and competent assessors so that research projects may compete on an equal footing against other research projects; and
- CFS/ME be declared an area of `special initiative' and $200,000 per annum be assigned to research into the biological cause(s) and possible cure(s) or carried over to subsequent years should there be no suitable research project.
by Senator Stott Despoja (from 2,156 citizens) Petitions received.
Australian House of Representatives Hansard
for 23rd October 1997
COMMITTEES Family and Community Affairs Committee Report
(extract relating to CFS/ME presented here only)
Mr EOIN CAMERON (Stirling) (11.50 a.m.)--
A question we, as policy makers, should also be asking is: what can we do to prevent suicide? I know that I cannot answer that question. This report will hopefully be the first step in providing those answers. Rather than offering my thoughts any further, I would like to read to the chamber part of an essay from Catherine Whisson, a young Western Australian delegate to the Australian Youth Forum which took place here in Canberra earlier this year. I thought is something worth taking in because she and her peers are representative of the people that we are talking about here today, and the people that we are trying to help. She wrote:
I was fortunate to have a loving family and friends to help through some dark times. When I was diagnosed with Chronic Fatigue Syndrome (CFS/ME) I felt alone. CFS/ME is a little known debilitating illness causing social, physical and emotional problems. My whole life went through upheaval as I tried to cope on my own in the city, after a recent move from Busselton for study and employment.
Australian House of Representatives Hansard
for 27th October 1997
ADJOURNMENT
Chronic Fatigue Syndrome
Mrs ELIZABETH GRACE (Lilley) (10.45 p.m.)--
Judy Williams is a high achieving individual who successfully balanced work and family commitments. One morning she woke up feeling unwell. Now, instead of paying taxes, she relies on the generosity of the Australian taxpayer for a disability support pension.
Isolation gripped Judy's life. No-one understood what she was going through--not family, not friends, not even her former work colleagues in the medical industry. Sympathy was short on the ground and barbs like `hysterical woman' and `malingerer' cut extremely deep. She felt outlawed and ostracised by society and thoroughly misunderstood by doctors. Judy had been robbed of her financial and emotional independence and started to question her sanity. Her daughter even asked, `Where has my mother gone?'
Judy is afflicted with chronic fatigue syndrome. Despite the heartache of chronic fatigue, Judy Williams is fighting back in the most inspirational way. She has set up an organisation called Future Health Resources to facilitate education and disseminate information for medical practitioners. Because of an appalling lack of knowledge in the medical world, Judy hopes to be able to short-circuit some of the misinformation that exists.
Future Health Resources has been set up with the help of another chronic fatigue syndrome victim. Her associate, like many other sufferers, was caught in the vicious circle of falling ill, returning to work and then falling ill again. She has not worked for two years and has been forced to move back home with her mother and sell her home and her car. To make matters worse, she has spent over $60,000 on treatment that has not been successful. In a letter to my office on 26 September 1997, they wrote:
Future Health Resources was born out of frustration and need by 2 individuals who have 22 years experience, collectively, with chronic fatigue syndrome. We function from a one bedroom unit with a loaned fax machine. Both of us have personally experienced the emotional and physical traumas that go hand-in-hand with this devastating health problem.
Neither of us are able to work in our full-time careers and struggle on a day-to-day basis both financially and physically. We have witnessed and experienced mis-diagnosis and mis-treatment and all the side effects that flow on. Because of this, we decided to address the desperate need for educational programs for health practitioners.
I have since met both these ladies and have gained a deeper appreciation of the difficulties faced by chronic fatigue sufferers. Chronic fatigue syndrome is a far more complex disorder than the commonly held perception that it is just a `yuppie flu'. The symptoms of chronic fatigue syndrome can be so severe as to keep a person bedridden, in a wheelchair or even forced to use a walking stick. There have been reported deaths from the complications of the syndrome. However, more common symptoms include debilitating fatigue, nausea, emotional distress or intolerable headaches. These symptoms are compounded by either insomnia or the need to sleep for up to 20 hours a day.
Judy Williams is confident there is light at the end of a very long tunnel. Australia's University of Newcastle has developed a diagnostic tool and also believes there is a strong link between chronic fatigue and common bacterial infections. These eminent researchers are making real progress in unravelling the details of the syndrome, and the University of Newcastle team has been buoyed with the news that a Swedish research team has independently duplicated its results. However, the University of Newcastle research team desperately needs research dollars to continue this vital work.
This Saturday, 1 November, I will officially open a seminar entitled `New developments in chronic fatigue syndrome', which is for the health industry. It will be held at the Powerhouse Boutique Hotel in Hamilton in Brisbane. The keynote speaker will be Associate Professor Tim Roberts, who is the head of the Newcastle research team into chronic fatigue syndrome. I would be happy to furnish any member with further information on chronic fatigue syndrome or the results of the seminar. I commend Judy Williams and the work of Future Health Resources to the House.
Taken from the Hansard Search web site.