Hello to all our supporters and readers of the Emerge Australia newsletter!
A warm welcome to everyone reading the Emerge Australia newsletter in 2025. Whether you have just heard of us and joined or whether you are longstanding members of the ME/CFS and long COVID communities, we are delighted to provide you with this regular update on who we are and what we do.
As news of the first interest rate cut in four years sinks in, we are all breathing a sigh of relief – it’s about time! Whilst that wait is over (for now), it pales into insignificance against the endless wait and patience that people with ME/CFS, long COVID and other energy limiting diseases have to endure to be believe, treated and heard.
At Emerge Australia, we see you, we hear you and we work tirelessly to advocate and lobby with you and for you. One of the really exciting developments I would like to let you know about is our Election Commitments Document and broader election strategy, which are a result of a collaboration between ME/CFS Australia; Bridges & Pathways; MEANA; Myalgic Encephalomyelitis Group Australia and Emerge Australia. You can find the document here, where we outline four key priorities, on which we seek election commitments from the major parties and independents.
We, the people living with or otherwise impacted by ME/CFS and long COVID, urgently need government to:
- Invest in ME/CFS research to identify research priorities, improve understanding of the cause, development of a diagnostic test and identify effective treatments
- Invest in clinical education to ensure GPs and health providers are managing these conditions safely, underpinned by the latest evidence on diagnosis, management and treatment.
- Invest in ME/CFS and long COVID patient support and healthcare including greater access to Telehealth, allied health services and in-home care
- Deliver equitable access to and within the NDIS and Disability Support Pension for people with ME/CFS and long COVID.
Now is the time for our entire community to be counted and heard. We will be rolling out our joint election campaign strategy over the coming weeks and will be seeking your support in making our voices heard. Stay tuned for more.
It is an extremely busy time for our small, dedicated team at Emerge Australia. We have many exciting new initiatives we are working on that will be part of our next newsletter as they are a work in progress. These include among others:
- Information on our soon to be formed Community Advisory Pilot Project
- Our new Emerge Australia mascot
- Outcomes of our accessibility survey and implementation of those outcomes
- Announcement of new Ambassador
In closing this first CEO update, I know how many of you are working on obtaining NDIS support and how time consuming and utterly distressing and costly this process can be.
Well, for one person in our ME/CFS community, I can report good news. Just hours prior to me going to the Administrative Appeals Tribunal with her to argue her case for inclusion onto the NDIS, she received the call she had been waiting for – she has been accepted. Such good news and hope for all.
For every one person granted access to the NDIS, there are hundreds others being gaslit, having to go through enormous hoops for evidence and supporting documentation only to be rejected at the final hurdle. Unfortunately, Emerge Australia has insufficient staff to work through every case that comes to us, which is one of the reasons why we need funding to expand our Patient Services area.
I write this to give those of you still struggling and feeling left out by a system that is meant to support you hope – please don’t give up. Good results do occur and we will do whatever we can to support you in your quest to receive all the assistance you need.
I hope you enjoy the rest of this newsletter and please remember to keep an eye out for how you can help our joint election strategy reach as many people as possible during the upcoming election campaign. Every vote counts!
Very best wishes to you all and don’t hesitate to write to me at any time with suggestions and your thoughts.
