Published: 18 October 2023
Emerge Australia, a national advocacy group for myalgic encephalomyelitis/chronic fatigue syndrome, is partnering with universities across the country to expand its research to long COVID as well as ME/CFS by inviting people over 12 years old with post-infection diseases to enrol on the AusME registry
“People can join the AusME registry by signing up online and completing a series of surveys including medical history, co-occurring conditions, symptoms, medications, and quality of life,” said Emerge Australia in a press release.
Patients can also provide blood which “will help discover disease causes and treatments”.
The new registry will build on the existing You+ME registry which launched in 2021 and holds data and biosamples that are used in ME/CFS research for more than 10 approved Australian research groups.
All those registered on You+ME will be transferred to AusME.
This includes people living with ME/CFS and healthy controls.
Emerge Australia hopes that “AusME will provide researchers with important insights into the lived experience of those with post-viral illnesses”.
“The recent pandemic affected many Australians, and no one really knows how many have been impacted by long covid or whether certain groups have been affected more than others,” said Emerge’s CEO Anne Wilson.
“An online registry collating big data from the very patients affected by these diseases will transform ME/CFS and Long COVID research.”