Published: October 12 2023
AusME Registry and Biobank expands research into ME/CFS to include long COVID
Call for participants to help unlock the mystery of invisible illness
A registry of people living with debilitating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) will be expanded to include people with long COVID.
AusME Registry and Biobank, a collaboration between national patient advocacy organisation Emerge Australia and universities, is recruiting people with post-infection diseases to join research efforts to find a cure for complex illnesses.
Although long COVID has only emerged in recent years, researchers have uncovered clear overlaps between it and ME/CFS. There are up to 250,000 people living with ME/CFS with forecasts that 320,000 people will develop long COVID.
AusME will replace the existing You+ME Registry (Aust.) launched in 2021.
People living with ME/CFS and carers and supporters, who will function as healthy controls, will transfer to the new AusME Registry.
Existing You+ME participants will be notified and transferred across to AusME which is short for Australian ME/CFS and long COVID (AusME) Registry and Biobank.
Teens aged 12 to 17 will be able to participate in the registry with the consent of parents or guardians.
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.
Emerge Australia’s main collaborators are affiliated with LaTrobe University, Australian National University (ANU), University of Melbourne, Macquarie University and Murdoch Children’s Research Institute.
LaTrobe University’s Professor Paul Fisher is Biobank chair and chief investigator on the Mason Foundation grant which currently funds the Biobank and Registry.
Emerge Australia Chief Executive Officer Anne Wilson said: “The AusME registry will build on the work of the You+ME Registry.”
The new registry will be officially launched during a webinar to the Emerge Australia community on Thursday, October 19.
More than ten approved Australian research groups use the current registry data and biosamples in their research.
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.”
Emerge Australia is also hopeful that clinicians will refer patients to the AusME registry and Australian medical researchers and clinical trial coordinators, will tap into the resource to research and perform clinical trials for those with ME/CFS and long COVID. The registry will provide a thoroughly characterised patient cohort to support their studies.
“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,” she said.
She said the target audience should be broad to make a serious contribution to the evidence base required for prevalence rate estimates.
Research could inform policy for better healthcare and financial support for the Australian Government to draw upon.
