Geoff Lyons (Bass, Australian Labor Party) Share this | Link to this | Hansard source

I rise to bring the House's attention to the seriousness of chronic fatigue syndrome, commonly known as CFS, in Australia. As many of you would be aware, this week is ME/CFS Awareness Week. It is estimated by ME/CFS Australia that approximately 180,000 Australians suffer from this severe neurological disease, often referred to as the 'invisible disease' as so many people that are suffering go unnoticed.

Many Australians are unaware of the suffering that those with CFS endure. Symptoms include fatigue; post-exertional malaise; pain; dysfunctional sleep; neurological and cognitive manifestations, including issues with short-term memory and concentration; autonomic manifestations; and immune system and neuroendocrine manifestations. And this suffering is not for a short time. This is a serious illness—some people are housebound, some are bed bound and some, sadly, never recover. A study described CFS this way:

… the patient's activity level is reduced by approximately 50% or more … ME/CFS is "actually more debilitating than most other medical problems in the world" …

Yet there is very little support for those suffering.

It is not just the physical symptoms that affect sufferers. Looking after someone who has fallen victim to this illness is a heart-wrenching job, and this can lead to family and social breakdown. There is also the cost of doctors appointments, ongoing tests and seeking a treatment that might help even a little to ease the pain and discomfort associated with the illness. A study by the Australasian College of Physicians found that in 2000-01 the annual aggregate cost totalled $13,471 per patient. Although this figure is from some time ago, it demonstrates the high cost of this illness.

Many younger people cannot complete their high school or college years or are too unwell to attend university, which has implications for their long-term employment prospects. Adult sufferers often miss large amounts of work or are unable to resume their careers at the level they were once at. This illness is so multifaceted and it affects not only the sufferer but also their carers, family and all of those close to them.

I think that it is particularly difficult for younger sufferers. Often their peers do not realise the magnitude of the illness, and it is easy for them to say that the person is putting it on or seeking attention by saying they are sick. It is not like this at all. This is a time in the sufferer's life when they need all the support they can get, but so many Australians just do not realise exactly what this illness means to someone who has it. The reason I am speaking about CFS tonight is that I want to raise awareness of what this illness is—the magnitude of the illness and what it is like to be a sufferer. Treatment for this illness is not simple—it is not simply taking medication to alleviate symptoms. It is a complex illness which affects sufferers differently, but all need treatment, support and recognition of what they are going through. I want to raise awareness of it so that we can work together to provide support for these sufferers. It is important that we provide support for the organisations that so need funding and the resources these people need to fight this debilitating illness.

Finally and importantly I urge everyone in this place to be involved in ME/CFS Awareness Week and to wear a ribbon tomorrow. This is a way of showing our support and recognising the suffering that this terrible, debilitating illness inflicts.