A Registry for the ME/CFS + Long Covid Communities
Help us uncover causes + identify treatments for ME/CFS, Long Covid + other post-viral illnesses.
We promise to protect your privacy. We will not share your contact information with any outside parties.
Read full privacy statement.
The You + ME Registry + Biobank is a collection of patient-reported data + biological samples (e.g. blood) from people living with myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS) + Long Covid, plus healthy volunteers. Our large, rich dataset is used by researchers searching for treatments + a cure.
You can help.
How Does It Work?
Researchers seeking diagnostics + treatments are vetted by a review panel to access de-identified data + biosamples. Data demonstrating their findings are shared with us to benefit other researchers.
Our community is made up of people with ME/CFS, people with Long Covid + healthy volunteers.
You’ll have the option of providing biological samples (e.g. blood) that are banked to support research.
You use a secure web portal to enter self-reported information at baseline + at follow-up timepoints.
Information contributed by you + thousands of others is aggregated into a longitudinal dataset for research.
3. MOBILE APP
You can download the You + ME mobile app, an optional way to track your symptoms, life events, activity levels + overall wellness.
How it works
The community is made up of people with ME/CFS, people with long-COVID-19, and control volunteers
Everyone uses a secure web portal to enter self-reported information at baseline and at follow-up timepoints
3. MOBILE APP
Participants can download the You + ME mobile app, which allows for tracking of symptoms, life events, activity levels and overall wellness as often as daily
Information contributed by people over time through the Registry web portal and mobile app is aggregated into a longitudinal dataset for research
Participants provide biological samples (e.g. blood) that are banked to support a range of research projects
Researchers vetted by a review panel can access de-identified data and apply for biosamples for studies; data is contributed back to You + ME
You matter. Your story matters.
You know your disease best + have invaluable information to share. You + ME connects you with researchers + provides a platform to share what you know about your disease + to influence research. Working together, we can answer questions most important to people who live with ME/CFS, Long Covid + other post-viral illnesses
Help us grow!
You + ME Community
You + ME | ME/CFS
You + ME | COVID
You + ME | Australia
You + ME | Control