Parliamentary Friends of ME/CFS
Tuesday 10 March
On Tuesday 10th March, ME/CFS Alliance Australia and Co-Chair Dr Mike Freelander MP, hosted the Parliamentary Friends of ME/CFS meeting at Australian Parliament House during Long COVID Awareness Week
The meeting, themed Fluctuating Energy, Fixed Systems, highlighted a central policy failure: people living with ME/CFS and long COVID often experience fluctuating and unpredictable capacity, but the systems they rely on are still designed around fixed assumptions of functioning, attendance and recovery.
Event Recording
A full recording of the meeting will be available on our website in the coming days.
“People living with ME/CFS must manage fluctuating and unpredictable energy levels, yet they are required to navigate systems built around fixed expectations.” – Anne Wilson, Chair ME/CFS Alliance Australia and CEO, Emerge Australia.
Speakers highlighted the consequences of this mismatch across health, disability, education and employment systems: delayed diagnosis, disbelief and stigma, fragmented care, barriers to work and study, limited access to informed, appropriate healthcare, and systems that fail to account for fluctuating capacity or deterioration after exertion.
“Our rigid systems are asking the sickest people to do the most work to prove they are sick and to get treatment for their sickness.” – James Dunn, person living with ME/CFS.
Lived-experience speakers brought these failures into sharp focus. Henry Barker spoke powerfully about the impact of ME/CFS and long COVID on adolescence, participation and identity, while Sandra Goodyer spoke to the profound impact on families and carers, and the way these conditions can quietly but fundamentally reshape everyday life.
Clinical and research speakers made clear that this is not only a human issue, but also a health system, workforce and economic issue. Professor Peter Schofield AO, Chair of the Mason Foundation National Medical Advisory Panel, highlighted the need for stronger national coordination across research, clinical services and trials, and Dr Emma Tippett outlined the significant workforce and economic impact of long COVID and the cost of continued inaction.
“The cost of doing nothing vastly outweighs the costs of acting.” – Dr Emma Tippett, Director, Clinic Nineteen
The meeting pointed to clear priorities for reform: better clinical education, earlier diagnosis, multidisciplinary and telehealth-enabled care without the annual face to face requirement for the most unwell, stronger recognition of post-exertional malaise and fluctuating capacity, improved access to affordable management and treatment, and sustained national investment in research and coordinated service responses.
The event also recognised the importance of public understanding and media leadership, with the Long COVID Media Award presented by The Hon. Health Rebecca White MP to journalist Felicity Nelson for her powerful, evidence-based reporting on long COVID and its ongoing impact in Australia.
We thank all speakers and parliamentarians who contributed to the discussion, including co-chair Dr Mike Freelander MP, The Hon Rebecca White MP, and Dr Monique Ryan MP.
“Lived experience, I think, is incredibly valuable, particularly for policymakers and decision makers like myself.” – The Hon Rebecca White MP, Assistant Minister for Women, Indigenous Health, Health and Aged Care.
The message from the day was clear: people living with ME/CFS and other energy limiting conditions have waited too long for systems that understand fluctuation, reduce harm and respond effectively. Australia now needs leadership, coordination and investment that match the scale of the issue.
For clarity: during the meeting, Anne mistakenly said that the RACGP had withdrawn its HANDI guidance on ME/CFS. What she intended to say was that withdrawal of the guidance was recommended in an article published in the Australian Journal of General Practice, the academic journal of the RACGP. We unreservedly support that recommendation.
Our event partners
This event would not be possible without the collaborative efforts of the following ME/CFS organisations. Learn more about their vital work by visiting their websites:
- Bridges & Pathways
- ME Advocacy Network Australia
- ME/CFS Australia
- Myalgic Encephalomyelitis Group Australia
Together, we’ve taking another step towards ensuring that the ME/CFS community receives the care, recognition, and support it deserves.
A full recording of the meeting will be available on our website in the coming days.
