Event on 20 June, 2018
Sam Duluk MP speaks in SA Parliament
Sam Duluk MP tables a Private Member's Grievance highlighting ME/CFS.
ME/CFS raised in the SA parliament
Having shown strong interest in our concerns at our badge day in May, Sam Duluk MP raised ME/CFS in the SA Parliament on Wednesday 20 June 2018.
A number of our members were present. We were very conscious of those who were unable to join us due to their health, including Angus Resch, who had graciously allowed his story to be told by Sam in the Chamber.
Many thanks to Sam for not only giving the speech, called a Private Member’s Grievance, but also giving a brief tour of the Legislative Assembly and then spending time with us on the steps outside to talk about ME/CFS issues.
Thanks are also due to Lisa Raby from Sam’s office for collaborating with us to enable the speech to take place and for hosting us at Parliament House.
Sam’s speech: video and Hansard
Mr DULUK (Waite): I rise today to speak about the debilitating neuro-immune illness ME/CFS (myalgic encephalomyelitis), sometimes known as chronic fatigue syndrome, and to raise awareness of ME/CFS in this parliament. I welcome members of ME/ CFS Australia (SA) who are in the gallery today. You are very welcome in this parliament. ME/CFS Awareness Week occurred between 11 and 17 May this year, and on 24 May I had the pleasure of joining volunteers at Mitcham shopping centre, who were collecting for their badge day appeal, together with year 9 students from Concordia College.
ME/CFS affects up to 240,000 Australians, with 11,000 South Australians living with ME/CFS. Symptoms related to this condition cause dysfunction to the brain, the gastrointestinal system, the immune system, and the endocrine and cardiac systems. The central feature of ME/CFS is that effort leads to a worsening of symptoms that leads to a reduction in functional ability. This effort might be physical, cognitive or emotional. Twenty-five per cent of those suffering chronic fatigue syndrome are house or bedbound.
The quality of life for people with severe ME/CFS has been compared with those suffering from cancer or the final stages of HIV/AIDS, with heart failure the most common cause of death for those living with ME/CFS. ME Australia reports that ME/CFS has about a negative $4 billion effect on the Australian economy because so many of those suffering from this condition are unable to fully participate in the workforce and the broader community as well. That leads to a sense of isolation, which is one of the most devastating effects of this condition.
In my electorate of Waite, there is a family I have come to know who have a son suffering from this condition, and I thank the Resch family for allowing me share the story of Angus, who is 16 years old. Angus would be in year 11 this year; however, due to the severity of his chronic fatigue, Angus has been unable to continue his schooling. For any young person to not be able to continue schooling is such a big issue. Our society pretty much depends on people finishing school to participate in society fully as members of our community, and in the workforce going forward. To quote Angus’s mum, Megan:
“Angus was a good student who enjoyed learning, he found literacy particularly easy. These days he can barely write his name by hand, but luckily has great keyboard skills.”
“We think it started when [Angus] was around 11 and, with hindsight, it explains the struggles he had all through year 7 and even late in yr 6 [at primary school]. It is likely Angus will not do High School at all. That’s a big hole in his life.”
I think that is something we should all be very mindful of. Angus’s mum goes on to say:
“The school had provided a fairly reasonable opportunity to access education, firstly with reduced lessons and then encouraging a term at Open Access College….....So in a nutshell, our biggest issue has been lack of understanding of ME, and specifically how impaired Angus is by it.”
In the small opportunity I have today, having come across a wonderful group of volunteers a couple of weeks ago, I feel it incumbent on me to do my bit to raise awareness of this issue and then to see how the parliament and, more broadly, the new government can assist people.
The ME/CFS Australia (SA) organisation is run primarily by people with chronic fatigue, their parents, friends and spouses. This includes the management committee and other volunteers. Less than 15 per cent of people with ME/CFS are in the workforce, so most people are living on the poverty line. The organisation runs on the smell of an oily rag, but they need more help. They are looking at the moment for other support to raise awareness through web and DVD-based outreach to households, and the online and hard copy publication of materials for parents, schools and other service providers. This is an organisation most definitely in need of a bit of help from the community.
In the lead-up to the state election, the Liberal Party went with a Better Prevention for a Healthy South Australia policy as part of our strong plan. Prioritising the health and wellbeing of South Australians and investing in preventative health is a key way to make health funding more efficient. Every health dollar that is spent on promotion and prevention is a health dollar saved, in my view. I look forward to working with the government to use evidence-based strategies and monitoring research to ensure that people with ME/CFS and other medical conditions have improved and more effective services to address their needs. I thank the volunteers group for all they do to raise awareness on behalf of their small but very passionate and vocal community.
Last edited: 24 November, 2020