Hello to all our supporters and readers of the Emerge Australia newsletter!
We are delighted to bring you this action-packed September newsletter, filled with the latest Emerge Australia news and updates. Somehow, we’ve already reached the final quarter of 2025—and as always at this time of year, there is so much to share.
Welcoming a New Ambassador
We are thrilled to introduce Lily Schubert as Emerge Australia’s newest Ambassador. Lily’s story is deeply inspiring, and we look forward to working alongside her to raise awareness of ME/CFS and highlight its impact on individuals and families. You can read more about Lily’s journey in this issue.
Advocacy in Canberra
With Australia’s 48th Parliament now two sessions in, the healthcare and charitable sectors have been active in Canberra. As CEO, I spent four days meeting with MPs, Ministers, and advisors, as well as attending Medicines Australia’s Horizon Scanning Workshop and PharmAus at which the Health Minister Mark Butler and Shadow Health Minister Anne Ruston spoke and the Neurological Alliance of Australia (NAA) had a booth.
In my role as Deputy Chair of the NAA I also had the privilege of chairing a powerful lived-experience panel at the launch of the NAA’s Blueprint: A National Action Plan for Neurological Conditions (including ME/CFS). The event was well attended and offered valuable opportunities for collaboration and advocacy.
Driving Policy, Research, and Support
While this national advocacy continues, our dedicated Emerge Australia team has been hard at work:
- Developing health policy and clinical education initiatives
- Delivering telehealth services, online learning, and support groups
- Advancing research through the AusME Biobank and AusME Registry
This work remains at the heart of our mission to support, educate, and create change for the ME/CFS community.
Coming Soon: Merchandise & Mascot
We’re excited to announce the upcoming launch of a small Merchandise Shop. Thank you to the 200 people who shared feedback on slogans – your input shaped our first range, which will feature items for both the wider community and people with ME/CFS.
Alongside the shop, we’ll also be introducing our very own mascot: Betty the Battery. Some of you may have already had a sneak peek, but Betty will officially launch with the shop. She’s a soft, squishy, cuddly toy (that also doubles as a neck pillow!)—and we have big plans for her in the future.
Global Research Momentum
Finally, we were encouraged by the recent outcomes of DecodeME, the world’s largest genetic study of ME/CFS, led out of the University of Edinburgh. This landmark research must now be built upon, and we are hopeful Australia will play a leading role in the next phase. I’ll be recording a podcast with Professor Chris Ponting in the coming weeks – stay tuned for details.
As always, I’d love to hear your thoughts on our work. Please enjoy the rest of this newsletter, and I’ll talk to you again next month – if not before!
