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Monday, 27 October 1997
Page: 9903


Mrs ELIZABETH GRACE(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.