A Registry for the ME/CFS and long-COVID Communities
Together we can uncover causes and identify treatments for ME/CFS and post-viral illnesses
The You + ME Registry and Biobank is a collection of patient-reported data and biological samples (e.g. blood) from people living with myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), people with long COVID, and control volunteers. A large, rich dataset gathered over time from thousands of people will drive discovery towards potential treatments and cures.
How it works
6. research
Researchers vetted by a review panel can access de-identified data and apply for biosamples for studies; data is contributed back to You + ME
1. people
The community is made up of people with ME/CFS, people with long-COVID-19, and control volunteers
5. biobank
Participants provide biological samples (e.g. blood) that are banked to support a range of research projects
2. registry
Everyone uses a secure web portal to enter self-reported information at baseline and at follow-up timepoints
4. dataset
Information contributed by people over time through the Registry web portal and mobile app is aggregated into a longitudinal dataset for research
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
1. people
The community is made up of people with ME/CFS, people with long-COVID-19, and control volunteers
2. registry
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
4. dataset
Information contributed by people over time through the Registry web portal and mobile app is aggregated into a longitudinal dataset for research
5. biobank
Participants provide biological samples (e.g. blood) that are banked to support a range of research projects
6. research
Researchers vetted by a review panel can access de-identified data and apply for biosamples for studies; data is contributed back to You + ME
Why Join?
Your data and the story behind it matter. People with chronic illness know their disease best and have invaluable information to share based on lived experience. You + ME is a way to connect patients to researchers; giving you a platform to share what you know about your disease, and inform and influence research. Working together, we can answer the questions that are most important to people who live with chronic illness.
Your data and the story behind it matter. You + ME is a way to connect patients to researchers; giving you a platform to share what you know about your disease, and inform and influence research.
Use our interactive tool to visualize the impact of ME/CFS on people’s lives.
Help us grow these numbers with your participation!
1648
People with ME/CFS in registry
11
People with COVID in registry
232
Control volunteers in registry