On 27 March 2024 in Parliament House Canberra, Emerge Australia supported by Open Medicine Foundation Australia, brought clinical scientific and patient representatives together to discuss the urgent needs of the estimated 250,000 Australians across all ages and regions with ME/CFS. With 75% being women and 25% house or bed bound, they and their families total over a million Australians whose lives are profoundly impacted by ME/CFS. They continue to be unseen, unheard and invisible.
The meeting was conducted in the context of Recommendation 8 of Sick and Tired: Casting a long shadow Long COVID Inquiry 2023 which said: The Committee recommends funding be made available
for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research and patient support and that this funding should be allocated in consultation with peak bodies for ME/CFS and with note of the recommendations of the ME/CFS Advisory Committee’s 2019 report to the National Health and Medical Research Council.
On Thursday 9 May we met with Health Minister Mark Butler and presented him with the report written from the event: Shining a light on Recommendation 8.
Attended by ME/CFS community representatives, Emerge Australia CEO Anne Wilson, Chair Mark Clisby and Chair of Open Medicine Foundation Bill Ranken, as well as members of our Medical and Scientific Advisory Committee, we were encouraged by the Minister’s response to all matters raised.
