ME/CFS and long COVID Action Forum
From Stigma to Science: Educating for Change
On Thursday 30 October, at Australian Parliament House, Emerge Australia hosted an ME/CFS and long COVID Action Forum. It was a powerful afternoon of insight, collaboration and determination to improve the lives of people living with ME/CFS, long COVID and other energy-limiting conditions.
Collaboratively, we brought people with lived experience, researchers, clinicians, parliamentarians, and departmental representatives together, united by a shared goal: to move beyond stigma and inform science, policy and practice that truly supports our community.
Event Recording
In his welcome address Professor Michael Kidd AO, Chief Medical Officer, talked to the stigma and the harrowing suffering for those living with ME/CFS, long COVID and related energy limiting conditions. He spoke of the struggle to be believed and supported, noting the impacts of lives constrained, opportunities lost and voices unheard. He recognised the scientific evidence for the genuine biological basis of these conditions and encouraged us to together move from stigma to science and from silence to meaningful change.
Anne Wilson, Emerge Australia’s CEO, further welcomed everybody to the event, and explained its place in creating change for our community: “This event marks the second Emerge Australia forum in our Roundtable series. An outcome of our first Roundtable, held in early 2024, was the Hon. Mark Butler allocating $1.13m for the NHMRC to work with the sector to update and develop new Clinical Guidelines for ME/CFS. A landmark decision for which the ME/CFS community had been advocating for 22 years. That work is now well underway.”
Today, we sought increased financial investment into ME/CFS and long COVID by shining a light on these invisible, fluctuating and energy-limiting conditions that are under-recognised and under-prioritised, leaving deep gaps in care and equity.
Dr Mike Freelander, MP, co-chair of the Parliamentary Friends Group for ME/CFS and Member for Macarthur, apologised that the recommendations of the long COVID inquiry haven’t been fully implemented. He said he is still working to have those recommendations funded and, more broadly, remains committed to putting the concerns of the ME/CFS community to Government, specifically about greater research funding.
Senator Jordon Steele-John, co-chair of the Parliamentary Friends Group for ME/CFS, acknowledged the hope that events like today’s bring to the ME/CFS community, noting that such moments are made possible through the leadership of organisations like Emerge Australia. Jordon highlighted the power of these gatherings in enabling the community to speak directly to decision-makers, and in allowing those decision-makers to see the impact of ME/CFS.
What We heard
Across every presentation and story, a shared message came through clearly: education and research must go hand in hand if our community is to experience equitable access to health, disability and income supports.
- Education – Clinicians, patients, and NDIA assessors all need evidence-based knowledge to improve care and reduce harm.
“Our vision is simple: when clinicians are informed, patients are believed. When systems are educated, care becomes equitable. Education turns compassion into competence.”
– Associate Professor Bernard Shiu, Chair RACGP Energy Living Conditions & Post-Infection Disease Working Group
- Research – Building on discoveries like DecodeME, a National ME/CFS Research Strategy is essential to guide investment and unlock diagnostic and treatment breakthroughs.
“There are three reasons why ME deserves a national [research] strategy: a high prevalence…, a huge and substantial health, social and economic burden of disease, … future-proofing… over the next 25 years the likelihood is a 50% chance of another such pandemic [like COVID-19]. We need to future-proof against the inevitable resulting high burden of post-pandemic viral and bacterial diseases.”
– Professor Chris Ponting, Chair Medical Bioinformatics, University Edinburgh
- Equity – Australians with ME/CFS and long COVID must have fair access to healthcare, disability and income supports.
“Living with ME/CFS is a life lived in darkness. Moments of connection are so rare that they are truly treasured. Being here today is one of those moments. It will take weeks or months for me to recover… As you leave work today, please remember us. We will be confined to our homes and our beds. We will be living in hope that you will take action to end the needless discrimination and suffering that people ME/CFS have endured.”
– Tracey Collins, Living with ME/CFS
Outcomes and Next Steps
The forum highlighted four clear priorities for action:
- Education: Equip patients, clinicians, and NDIS assessors with evidence-based knowledge which improves care and leads to informed decision-making.
- Research: Develop a National ME/CFS Research Strategy to build on discoveries such as the UK DecodeME study and drive investment in diagnostics and treatments.
- Healthcare access: Ensure our community can access safe, affordable healthcare — including telehealth and in-home supports.
- Disability supports: Guarantee equitable access to and within the NDIS, Foundational Supports and DSP for people living with ME/CFS and long COVID.
Emerge Australia will continue working with government, researchers and sector partners to advance these priorities and deliver real, life-changing improvements for our community.
The Forum was live posted on Bluesky, read the coverage HERE.
