Monday 18 November at Australian Parliament House, parliamentarians joined national ME/CFS organisations, clinicians, research and the patient community to spotlight an urgent call for action. The voices of the 250,000 Australians living with ME/CFS can no longer be ignored. It is the right of every Australian living with ME/CFS to equitably access best-practice health care and essential supports.
The Honourable Mark Butler MP, Minister for Health and Aged Care, officially opened the event. Anne Wilson, CEO of Emerge Australia, thanked the Minister for his leadership in enabling Australia’s new ME/CFS Clinical Guidelines through a $1.13 million funding commitment earlier this year.
Mr Alan Singh, Executive Director, Research Quality and Advice at National Health and Medical Research Council, provided an update on the progress of the guidelines. These evidence-based guidelines will make a profound difference in the early diagnosis and safe management of the condition, based on the latest scientific understanding.
The power of Parliament to drive change
This event underscored the pivotal role Parliamentarians can play in championing the needs of the ME/CFS community. Heading into the next federal election, we called on Australia’s leaders to commit to:
- Investing in clinical education
- Ensuring equitable access to health care, the NDIS and other disability supports.
- Advancing research into ME/CFS.
A gathering of minds and hearts
More than 160 people impacted by ME/CFS registered to join the meeting online, with an additional 40 in person. The session, expertly chaired by Peta Lange, Chief Counsel, Public Affairs, Ogilvy PR ANZ, featured expert and insightful contributions from those with lived experience Megan & Angus and Nicola & Bruce, and video presentations from Carla, ME Advocacy Network Australia, and Penelope McMillan, ME/CFS Australia spokesperson.
We are grateful to ME/CFS Australia SA, supported by Emily Bourke MLC, SA’s Assistant Minister for Autism, and her team for allowing us to share the powerful stories of lived experience.
We also thank the following speakers for their valuable insights, where available links to their presentations are included below:
- Hon. Mark Butler MP, Minister for Health and Aged Care
- Dr Mike Freelander, Federal Member for Macarthur
- Senator Jordon Steele-John, Co-Chair ME/CFS Parliamentary Friends Committee and Senator for Western Australia
- Mr Alan Singh, Executive Director, Research Quality and Advice at National Health and Medical Research Council
- Professor Paul Fisher, Chair Emerge Australia’s Medical and Scientific Advisory Committee, Latrobe University
- Dr Richard Schloeffel OAM, Emerge Australia Medical Director
Our event partners
This event would not have been possible without the collaborative efforts of the following ME/CFS organisations. Learn more about their vital work by visiting their websites:
- Bridges & Pathways
- Emerge Australia
- ME Advocacy Network Australia
- ME/CFS Australia
- Myalgic Encephalomyelitis Group Australia
Together, we’ve taken another step towards ensuring that the ME/CFS community receives the care, recognition, and support it deserves. Let’s keep the momentum going!
