Pilot Project
As Australia’s national patient representative organisation for ME/CFS and long COVID, the voice of those with lived experience is pivotal for Emerge Australia’s work. During 2025, we will pilot a Lived Experience Advisory Group (LEAG). It will be in a format that caters to the needs of our community. The LEAG will be codesigned by our community and LEAG members, in a two-step process.
This web page represents Emerge Australia’s hope for the LEAG. This page will be updated to reflect LEAG members’ ideas and input as the group evolves.
The LEAG’s membership will include people living with ME/CFS and/or long COVID, and carer representatives. We are also seeking members with broad and diverse professional or personal lived experiences.
Our plan for the development of the LEAG is:
Step one:
- In September, we will invite our community to tell us what they want from the LEAG and their ideas for how it should operate. We will collate and refine these into draft Terms of Reference for the LEAG.
Step two:
- Call for LEAG membership nominations.
- When launched, the LEAG will be piloted, refined and evaluated over eighteen months.
- Throughout this period, LEAG will reflect on its membership, purpose and refine what works and what doesn’t.
Aim of LEAG
While the ultimate purpose of the LEAG will be refined by members when the LEAG convenes, Emerge Australia hopes that the LEAG will provide strategic advice, influence Emerge Australia’s advocacy, policy and research priorities and recommendations to improve health and wellbeing outcomes for people living with ME/CFS and long COVID and those who care for them. By leveraging diverse experiences and insights, LEAG will enhance Emerge Australia’s impact, ensuring outcomes meet Emerge Australia’s needs and those of our community.
For further details please email: [email protected]
