World’s largest ME/CFS data repository expands to
Australia in initiative to open worldwide.
April 2021 — We are pleased to share that the You + ME Registry and Biobank, a Solve M.E. project, has partnered with Emerge Australia on a landmark effort to establish the first Australian ME/CFS patient registry and biobank. This significant undertaking will help create the largest possible dataset and harness the power of big data to understand ME/CFS.
The You + ME Registry, the largest repository of ME/CFS data in the world, was developed in partnership with ME/CFS community members to capture data and share critical insight into the lived experience and genetics of ME/CFS with researchers.
To participate in the Registry, ME/CFS patients and healthy control volunteers complete an online survey on medical history, co-occurring conditions, medications and symptoms. Once complete, users receive a link to the You + ME app. Using the app, patients can record ongoing symptoms and activity and how they affect everyday life in contrast to the snapshot that might be reported to a healthcare team during an office visit.
More than 3,000 participants have joined the Registry to date, generating over one million data points. As the Registry grows it becomes a more and more robust resource for researchers and unleashes the ability of big data to identify otherwise elusive insights for ME/CFS as it has for other complex illnesses. Including people from various geographical locations around the world will increase the scientific power of the data.
“We are delighted to collaborate with Emerge Australia on their efforts to expand ME/CFS research and create the first Australian ME/CFS patient registry and biobank,” said Sadie Whittaker, chief scientific officer at Solve M.E. “Our vision is to create the world’s largest ME/CFS data repository to help researchers find a cure, and this partnership is another critical step.”
“Our whole team is just so pleased to be able to offer the symptom tracking app for people with ME/CFS here in Australia,” Emerge Australia CEO Dr. Heidi Nicholl said. “We’re also using it as the primary way to recruit people into the new ME/CFS Biobank. This means that everyone who signs up is not only helping with the big data project but they will also have the opportunity to help Aussie scientists doing biomedical research.”
The project is an international effort that includes the UK ME Biobank as well as a collaborative research project using data and samples from You + ME co-led by Heidi Nicholl, CEO of Emerge Australia, and Paul Fisher, professor at La Trobe University. The Australian National University, British Columbia Women’s Hospital, CureME, London School of Hygiene and Tropical Medicine, Macquarie University, Murdoch Children’s Research Institute Victorian Paediatric Rehabilitation Service, Open Medicine Foundation and University of Melbourne are also involved in the research project.
About the You + ME Registry and Biobank
The You + ME Registry and Biobank, a Solve M.E. project, is an online clinical study committed to identifying a cure for myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), Long COVID and other post-viral illnesses.
Designed for and by patients, the Registry community is made up of people with ME/CFS, people with long-term symptoms of COVID-19 (“longhaulers”) and control volunteers collectively providing the research community with critical insight into the lived experience and genetics of these and other other post-viral illnesses. The Registry aims to create the largest possible data set and use the power of big data to identify otherwise elusive insights about ME/CFS and Long COVID as it has for other complex illnesses.
About Solve M.E.
Solve M.E. is a non-profit disease organization that works to accelerate the discovery of safe and effective treatments for ME/CFS, strives for an aggressive expansion of funding for research that will lead to a cure and seeks to engage the entire ME/CFS community in research, advocacy and patient support. Solve M.E. is the foundational ME/CFS organization, steadily broadening strategic, collaborative relationships with patients, researchers, government officials and other ME organizations across the globe.
About Emerge Australia
Emerge Australia is a national organization providing information, support and advocacy for people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Our work gives hope and help to more than 250,000 Australians living with ME/CFS.
The impacts of ME/CFS can be devastating, leaving 25% of patients housebound or bedbound, with many people unable to work or participate in community life. People living with ME/CFS often feel invisible due to the unknown cause of the condition, lack of effective treatment options and limited community awareness, leading many to ‘go missing’ from their own lives.
In order to continue our essential work, Emerge Australia relies on generous support from the community as we continue to lobby for increased public awareness and funding for biomedical research.