How our community contributes their experiences to our work
Emerge Australia represents people living with ME/CFS and long COVID and their carers (“our community”). We believe our work should be informed by their experiences. We do this in a variety of ways:
- Half of our Board members live with or care for someone with ME/CFS
- One third of our staff members live with ME/CFS
- We invite people from our community to tell us about their experiences via surveys
- We invite our community members to participate in the Parliamentary Friends Group and other advocacy opportunities such as the Round Table
- People from our community share their personal stories in the Emerge Australia Imagine Podcast Series
- Community members volunteer to assist with writing our Research Digest
- Staff with experience of living with ME/CFS were involved in the development of our clinical education modules
- Emerge Australia helps recruit participants for research projects
- We on our community to provide input into government submissions (either through personal quotes or through experiences that we hear about from community members)
- We seek advice from a First Nations person we collaborate with who lives with ME/CFS.
We are expanding ways that our community contributes to our work
In September 2024, ninety community members participated in our Community Experience Survey.
In response to the survey findings, we are expanding the ways our community inputs into our work by piloting a Community Advisory Panel.
As a small organisation, with the equivalent of only 6 full-time staff, the Community Advisory Panel will initially advise only on Emerge Australia’s advocacy priorities. We chose this format because advocacy is one of the key areas survey participants wanted to be involved in. Providing community input into our advocacy work is invaluable and offers a clear focus for the Panel to commence with. As the Community Advisory Panel evolves, we hope to broaden the type of advice sought for Emerge Australia’s other business units. The Advocacy and Policy Team will support the launch and pilot of the Panel.
We will incorporate our community’s experience into the Community Advisory Panel as described below.
Supporting Community Participation
We understand that people with ME/CFS and long COVID may have specific needs to facilitate their participation. We aim to meet these needs and is one of the reasons why we have chosen to start with a small panel of twelve people.
People in our community are often invisible because they are not supported so their voices can be heard. The initial set-up of the Community Advisory Panel will therefore enable us to learn about the best ways for members to contribute. We will endeavour to provide:
as much time as possible when requesting advice (although sometimes there will unavoidably be short turnarounds)
information in simple language that is easy to read, within the constraints of the work. For example, when seeking input into a government consultation process.
a range of ways of contributing e.g. on-line chats, one-to-one phone calls, emails, written submissions etc.
We recognise, and will cater to, the fluctuating and personal needs of panel members. We understand that a panel member may need to withdraw or wish not to respond to requests for advice, for any reason. Panel members will be empowered to decide which advice requests they respond to, according to their capacity, knowledge or interest. Panel members can decline a request for input for any reason.
Are you interested in nominating for the Community Advisory Panel?
We invite nominations for a position on the Panel. We seek to pilot the Community Advisory Panel with twelve members of our community.
Who we are looking for?
We are looking for people
- With experience of living in Australia with ME/CFS and/or long COVID or caring for someone who does; and
- From diverse backgrounds including different levels of symptom severity, younger people, older people, people from culturally and linguistically diverse backgrounds, LGBTQIA+ and people living in metro, regional and rural locations.
Nominations close 5pm Friday, 27 June 2025
