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Legislative Assembly for the ACT: 2021 Week 05 Hansard (Tuesday, 11 May 2021) . . Page.. 1316 ..

Standing orders—suspension

Motion by Mrs Jones agreed to with the concurrence of an absolute majority:

That so much of the standing orders be suspended as would prevent the adjournment debate continuing for a further 15 minutes.

Motion agreed to.

ME/CFS Awareness Week

MS STEPHEN-SMITH (Kurrajong—Minister for Aboriginal and Torres Strait Islander Affairs, Minister for Families and Community Services and Minister for Health) (5.10): I rise to acknowledge that this is Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Awareness Week. The awareness week started on Saturday, 8 May 2021 and tomorrow, Wednesday, 12 May, is recognised as International ME/CFS Awareness Day. ME/CFS is an invisible illness and a debilitating neurological condition. It is characterised by profound fatigue that is not relieved by sleep or rest following exertion and cognitive impairment. ME/CFS does not stop at fatigue; it also affects multiple areas of the body, including the gastrointestinal system, muscles and joints, causing pain and impairing immunity.

ME/CFS is characterised and can range from mild to very severe. A mild form of ME/CFS reduces a person’s activity by 50 per cent or more. A very severe form may leave a person living with ME/CFS bedbound and needing help with all the aspects of their daily life. People living with ME/CFS may be unable to work, go for a walk or leave their house or bed for large parts of their day, if at all. ME/CFS can even impact whether a person can brush their teeth or do as much as read a sentence.

Unfortunately, the reason people develop ME/CFS is still unknown and it can affect anyone of any gender, age or background. The true scale of how many people live with ME/CFS remains unknown due to the complex nature of the condition. Emerge Australia, the national organisation supporting people living with ME/CFS, estimates that up to 250,000 people are currently living with ME/CFS in Australia, with an estimated prevalence of 0.4 to one per cent of the population. Based on the current estimated prevalence rates, that means up to 4,300 Canberrans may be living with ME/CFS in our community.

There is currently no cure, with symptom management being the only treatment to optimise the quality of life for those living with the illness. One strategy people may use is pacing—that is, undertaking activities in a stepped and staged approach to ensure that rest is optimised and energy is maintained for those things that are the highest priority.

For those who are not familiar with the condition—and sadly I am because my nephew has ME/CFS and I also have friends with the condition—I urge you to check out Jennifer Brea’s Sundance award-winning documentary Unrest, if you can get a copy of it. Unrest is a personal journey from patient to advocate to storyteller.

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