In this episode, Soph is joined by Anne Wilson, CEO of Emerge Australia, the leading patient organisation for people living with ME/CFS in Australia.
Drawing on her extensive experience in health advocacy, policy, and systems leadership, Anne discusses the realities of living with ME/CFS, including the profound impact the condition can have on quality of life, the challenges many people face in obtaining a diagnosis, and the stigma and invalidation that continue to shape patient experiences.
Together, Soph and Anne explore the recent joint communiqué from Australian clinicians, researchers, and advocacy organisations, unpacking what post-exertional malaise (PEM) actually is, why it is a defining feature of ME/CFS, and why outdated approaches such as graded exercise therapy have remained so influential despite longstanding concerns from the patient community. The conversation also examines broader issues of medical bias, whose symptoms are believed, and the importance of ensuring that people living with ME/CFS are meaningfully involved in shaping research, policy, and healthcare services. Anne shares her thoughts on what needs to change at a systems level to improve outcomes for the hundreds of thousands of Australians living with ME/CFS.
Content warning: this episode includes discussion of poor healthcare experiences, medical gaslighting, stigma, and disability.
If you need support, Beyond Blue and Lifeline (13 11 14) are available for 24/7 mental health support in Australia.
You can learn more about Emerge Australia and access resources for people living with ME/CFS, Long COVID, carers, and health professionals via: https://www.emerge.org.au/
You can find Emerge Australia here:
- Read the recent joint communique
- Website: https://www.emerge.org.au/
- Facebook: https://www.facebook.com/emergeaustraliainc
- Instagram: @emergeaustraliainc