Today, the Parliamentary Friends of ME/CFS, co-chaired by Senator Jordon Steele-John and Maria Vamvakinou, will be launched today at an event in Parliament House 11 am - 12 noon AEST.
The friendship group aims to connect Members of Parliament with patient advocates and stakeholders from across the country, to improve outcomes for the community and ensure that people with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are not left behind by the federal government during the 47th Parliament.
At the launch event, people will hear from the Co-Chairs, Penelope McMillan from ME/CFS Australia, Anne Wilson from Emerge and a community advocate, Andrew Bretherton, to speak about their lived experience.
Members of the community from across the country will attend the event online.
Lines attributable to WA Greens Senator Jordon Steele-John, Greens spokesperson for Health and Disability
“It’s an honour to co-chair the Parliamentary Friends of ME/CFS. I hope this friends group will help bridge the gap between us all: people with ME/CFS, healthcare providers, and policy makers.
“ME/CFS affects a huge number of people in this country and for decades has failed to receive the recognition and understanding within the healthcare system that it needs. Too many people have been misdiagnosed, not received access to specialised clinics and in some cases - treatment that has actively caused harm to the people it was supposed to support.
“We know there are many actions the Federal Government could take to improve the lives of people with ME/CFS, including investing in research, better resourcing advocacy groups, and supporting healthcare providers to have a better understanding of the condition, its severity, and its impact.
“The government must urgently ensure that current disability support systems, including getting access to the Disability Support Pension (DSP) and the National Disability Insurance Scheme (NDIS) are available to people with ME/CFS. It can be extremely challenging for people with ME/CFS to navigate processes due to the fluctuating nature of their symptoms and the lack of consistent diagnostic criteria.”