Hello to all our supporters and readers of the Emerge Australia newsletter!
Easter has come and gone, and the first quarter of this year is behind us. It is truly hard to believe. In this newsletter you will read about our latest news and views and receive information and updates on the Clinical Guidelines Project run by NHMRC as well as learn of our ME/CFS Awareness Week plans, how to participate in our various surveys, clinical education news, research and lots more.
Importantly for me in this newsletter I need to highlight the critical need for your financial support of our work. As CEO of Emerge Australia the most difficult thing for me to do is reach out to those in our community, many of whom are already contributing to our work financially, to dig deep at this time of year. We thank each and every one of you.
Fundraising
Traditionally most of our major revenues at Emerge Australia are delivered in the last quarter of the financial year. This year is no different. Through our initiatives like Pedal for Power and our end of financial year Appeal we are reaching out seeking your support. These are very uncertain times, and we like other not-for-profits have no idea if future funding under the new Chronic Conditions Framework will be forthcoming.
So, I am appealing to you through this newsletter to please support our Pedal for Power fundraiser which runs to the end of ME/CFS Awareness Week. Pedal for Power was designed with the unique needs of our community in mind. We use the word ‘pedal’ as signifying any type of participation you feel you can undertake while raising funds for Emerge Australia’s work. Whether you are resting, stitching, reading, walking, or doing anything at all – do it for Emerge Australia and have your friends join in the fun. It is simple all you need to do is click on the link and GET STARTED TODAY. We need your help.
Following on from ME/CFS Awareness Week we will be launching our End of Financial Year Appeal where we shine a light on 17-year-old Henry who bravely shared his struggles with ME/CFS and long COVID at our Parliamentary Friends Group Meeting. Henry shares his story in our Appeal Letter which is a must read for everyone.
Department of Health and Aged Care
Just prior to our Parliamentary Friends Group meeting on 10 March the Minister announced the launch of the new Chronic Conditions Framework. The announcement was a welcome relief to all CEOs in the sector in the hope it would lead to greater clarity regarding new funding opportunities. Unfortunately, the new Framework did not come with the Implementation Strategy which we are all still waiting on leaving us all in limbo. It is expected any day given the budget will be brought down on 12 May. More information will be available in our next newsletter. Emerge Australia’s funding is secure up 30 November 2026, so we eagerly await news of new funding opportunities.
NDIS
We know many of you will be anxious about the proposed NDIS changes announced by the Minister recently.
The proposed changes are significant. They cover eligibility, functional capacity assessments, reasonable and necessary supports, plan reassessments, provider regulation, support coordination, and community participation. The full implications are still becoming clear.
What we can say at this stage is: Emerge Australia has serious concerns about what these changes could mean for people with ME/CFS, long COVID and other fluctuating, energy-limiting conditions. Many in our community have already been denied NDIS access because disability systems fail to recognise, understand or cater to conditions that fluctuate and are invisible.
We are advocating back to the Minister, and the NDIS through various committees on which we participate on your behalf.
We will not accept reform that simply removes people from one system without ensuring appropriate alternatives are in place first.
We will be advocating for reform that recognises fluctuating disability, assesses energy limiting and fluctuating functional capacity fairly, protects essential supports, and is developed in genuine partnership with the disability community.
You are not navigating this alone. Watch this space for more information.
I could go on but for now please read the rest of our newsletter packed with many feature articles of interest.
Our small but mighty team is advocating on your behalf continuously while delivering critical services designed to support you. Whether we are educating GPs, developing new CPD approved training materials, supporting you through our support groups, our digital information services, our Telehealth service or working to create more funds for research into ME/CFS – we see you, we hear you and are committed to working for you.
