Chronic Fatigue Syndrome

31st May 04

Mr ORGAN (Cunningham) (9.00 p.m.) — I would like to talk about chronic fatigue syndrome, or CFS, a silent epidemic and debilitating disease evidenced by profound exhaustion and extreme flu-like conditions. It was CFS Awareness Week in Australia from 8 to 15 May, providing an opportunity to consider its impact locally and abroad as well as the work of organisations such as the Wollongong ME/CFS Support Group and the ME/Chronic Fatigue Syndrome Society of New South Wales.

CFS is difficult to diagnose and cannot be cured and the causes are largely unknown. Some 250,000 Australians are affected by the illness and five in every 1,000 people attending a doctor have it. Its impacts are widespread, costing millions of dollars each year in medical expenses and loss of productivity. Urgent help is needed for sufferers and carers via Medicare and the welfare system to give them access to drugs such as neurontin and maintain their quality of life, pending recovery.

The personal cost is enormous. I know, for I acquired CFS in 1989 and was incapacitated and bed-bound for approximately six months. I suffered overwhelming fatigue, aching bones, sickness, blurred vision, tingling in my arms and fingers et cetera. I was unable to read or concentrate for six months as mental and physical activity would exhaust me. I had to quit my job in Sydney and return home—although, after six months of rest and a good diet, I was able to start part-time work and after a period of about two years I had enough energy to return to full-time work. I have largely recovered from CFS, though I occasionally suffer bouts of fatigue and need to manage my time and energy to make sure I do not have a relapse. I was one of the lucky ones.

Not so lucky is Kerri Stephenson of Wollongong. Kerri was born in 1976 and developed symptoms of CFS during her first year of university in 1994. By 1996 she was forced to quit her studies and return home. Kerri has been bed-bound ever since. For the last eight years her parents, John and Winsome, have had to care for her around the clock, putting their lives on hold. Various treatments, including exercise and hospitalisation, have been tried but none work. As Kerri said in a letter published in the Illawarra Mercury in 2001:

To me, ME/CFS is not just about feeling tired, it is about feeling so physically worn out that I can't even get out of bed by myself.

At the age of 25, I have to be taken to the shower by the nurse, by wheelchair.

ME/CFS is about pain in every muscle. It's a whole body experience, affecting all the systems of the body through the central nervous system and the immune system.

I have the pain and the weakness, but the symptom that frustrates me the most is the cognitive destruction.

Like so many others with ME/CFS, I have trouble putting my thoughts into words, then having the energy to speak ...

Kerri's case is nothing less than tragic. We need to find a cure so that young people such as Kerri can get their lives back. Unfortunately, the medical politics of the disease in Australia in recent years has left the CFS community feeling let down and abandoned. The publication just this month of a paper suggesting that exercise could alleviate the debilitating conditions of CFS has outraged sufferers and their carers. Exercise is important in the recovery phase, as in life generally, but CFS sufferers are usually so tired and fatigued that forced exercise can worsen their condition—and I know this from personal experience.

I am told that in Australia the severely affected—people such as Kerri—are not included in clinical studies. They are ignored. The severely affected are being harshly neglected by this government. In May 2002, outrage surrounded the release of the Commonwealth funded Royal Australian College of Physicians clinical practice guidelines for CFS in the Medical Journal of Australia. CFS was no longer an organic disease. It was now, according to the guidelines, primarily psychological in origin—a common mental disorder. What rubbish! Patient groups said the guidelines trivialised the condition, blamed sufferers for their illness and promoted harmful therapies.

Richard Larkins, former President of the Royal Australasian College of Physicians, wrote to the Medical Journal of Australia, unequivocally stating:

There is no evidence that the illness is primarily psychological in origin.

There is significant evidence of a range of biological abnormalities occurring in people with CFS.

It is evident that, amongst the medical fraternity in Australia, there is a lot of misinformation and misunderstanding about CFS—and the guidelines do not help. Doctors and researchers need to work with sufferers and their families to find the truth, to find treatments and to find a cure.

They need to learn lessons from people such as Kerri, John and Winsome Stephenson of Wollongong; from Christine Hunter of the Alison Hunter Memorial Foundation, set up in memory of a young 19-year-old Sydney woman who died in 1996 from complications arising from CFS; and from overseas research and experience. In 2000, I understand that Kerri Stephenson did not have the energy in her body to blow out the candles on her birthday cake. I look forward to the day when Kerri can blow out those candles and return to university to finish her degree. I know that day will come soon.