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), people with Long Covid + healthy volunteers. Our large, rich dataset is used by researchers searching for treatments + a cure.
You can help.
How Does It Work?
6. RESEARCH
Researchers vetted by a review panel access de-identified data + apply for biosamples. Data from their research is contributed back to You + ME.
1. PEOPLE
The community is made up of people with ME/CFS, people with Long Covid + healthy volunteers.
5. BIOBANK
You can also provide biological samples (e.g. blood) that are banked to support a range of research projects.
2. REGISTRY
Use a secure web portal to enter self-reported information at baseline + at follow-up timepoints.
4. DATASET
Information contributed by you + thousands of others is aggregated into a longitudinal dataset for research.
3. MOBILE APP
Download the You + ME mobile app to track symptoms, life events, activity levels + overall wellness.
How it works 
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?
You matter. Your story matters.
You know your disease best + have invaluable information to share based on your experience. You + ME connects patients to researchers, provides a platform to share what you know about your disease + 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
Support the Registry to help us find treatments + a cure.
You + ME turns one + we're celebrating all month!
Dr. Bhupesh Prusty joins us on September 20 and we'll share results of our Covid Vaccination Study later this week.