Welcome everyone to the August edition of the Emerge Australia newsletter.
It has been another busy month at Emerge Australia, with our Count ME campaign helping us continue conversations with Members of Parliament and their offices about the need for better recognition, data, research and support for people with ME/CFS. These meetings are an important part of keeping the issues affecting our community in front of decision-makers, including the essential role Emerge Australia plays in serving and supporting our community.
Despite strong concerns raised by the disability community, including through a submission from Emerge Australia developed in consultation with our Community Advisory Panel, the NDIS Amendment (Securing the NDIS for Future Generations) Bill has now passed Parliament. We remain concerned about what some of these changes could mean for people with ME/CFS and long COVID, particularly changes to access, treatment requirements and the way functional capacity is assessed.
I recently had the opportunity to meet with Senator Jordon Steele-John, who has been a strong supporter of the ME/CFS community and a vocal opponent of these NDIS changes. It was good to discuss our concerns directly with him and to thank him for his advocacy.
We will continue advocating on behalf of our community through submissions, our work with other organisations and alliances, and our representation on the NDIA Neurodegenerative, Palliative Care and Rare Diseases Advisory Group (NPRAG). This gives us an important opportunity to continue raising the issues facing people with ME/CFS and long COVID directly with the NDIA.
I also recently attended the Neurological Alliance Australia Summit at Parliament House in Canberra. One of the key issues discussed was the need for a properly funded National Action Plan for Neurological Conditions.
A national plan could make a real difference for people living with neurological conditions, including ME/CFS, by improving recognition, data, research, access to healthcare and support. Emerge Australia will continue to work through the Neurological Alliance to make sure the needs of our community are included as this work progresses.
Our advocacy also extends beyond Australia. Emerge Australia continues its work as part of the World ME Alliance, alongside ME organisations from around the world, to strengthen the international response to ME and encourage greater engagement and action from the World Health Organization.
Currently, I am representing Emerge Australia and the Australian patient voice in Amsterdam at the International Society for Long COVID and Post-Acute Infection Syndromes (ISLC–PAIS) Conference. The conference brings together researchers, clinicians, policymakers and patient representatives from around the world, including Emerge Australia Ambassador Prof David Putrino. It is an important opportunity to ensure that the experiences and priorities of people living with ME/CFS are represented in international discussions about research, clinical care and policy.
There is a lot happening at the moment, both nationally and internationally, and we will continue to keep you updated on this work.
As always, thank you for your ongoing support.
Enjoy reading this August edition!
