As part of Emerge Australia’s ongoing webinar series on October 19th at 2pm (AEDT), CEO Anne Wilson was joined by Chair of the Mason Foundation Professor Peter Schofield AO, Medical and Scientific Advisory Committee Chair, Professor Paul Fisher, Research Manager Dr Michelle Tavoletti, AusME Registry and Biobank Manager Dr Jessica Kauhausen, to officially launch the ME/CFS and Long COVID registry and answer some common questions.
Emerge Australia live tweeted the event and the thread can be read here
AusME will provide researchers with important insights into the lived experience of those with post-viral illnesses. Participants have the option of donating blood which will help discover disease causes and treatments.
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.
The AusME Registry and Biobank hopes to lead to reliable disease markers and effective treatments for ME/CFS and Long COVID.
Historically, inconclusive findings from ME/CFS research and clinical trials have been blamed on methodological problems, small sample sizes, and selection bias towards those less affected by ME/CFS.
“We need individuals affected by Long COVID and ME/CFS, as well as healthy volunteers, to sign up for the AusME Registry to support medical research discoveries into these diseases,” Ms Wilson said.
“An online registry collating big data from the very patients affected by these diseases will transform ME/CFS and Long COVID research.”
Join the AusME Registry or visit the website by clicking below.