A registry for the whole ME/CFS community
Together we can uncover causes and identify treatments for ME/CFS
ME/CFS is one of the few remaining, highly prevalent, debilitating diseases about which very little is known. To better understand the disease and characterize subtypes, we need a large, rich data set gathered over time from thousands of people with ME/CFS and healthy controls. This will drive discovery towards a potential cure for this disease.
How it works
6. research
Researchers vetted by a review panel can access de-identified data and apply for biosamples
1. people
Anyone with ME/CFS and healthy controls can sign up
5. bio bank
People with confirmed ME/CFS and healthy controls provide blood samples
2. registry
Everyone enters self-report baseline information into a secure web portal
4. tracking
Symptoms, life events, activity levels, and overall wellness are tracked over time in the app
3. app
Participants with ME/CFS get a link to download the You + M.E. mobile app
1. people
Anyone with ME/CFS and healthy controls can sign up
2. registry
Everyone enters self-report baseline information into a secure web portal
3. app
Participants with ME/CFS get a link to download the You + ME mobile app
4. tracking
Symptoms, life events, activity levels, and overall wellness are tracked over time in the app
5. bio bank
People with confirmed ME/CFS and healthy controls provide blood samples
6. research
Researchers vetted by a review panel can access de-identified data and apply for biosamples
Why Join?
Your data and the story behind it matter. People with ME/CFS know this disease best and have invaluable information to share based on their 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 with ME/CFS.
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 this disease on people’s lives.
Help us grow these numbers with your participation!
1562
People with ME/CFS in registry
197
People without ME/CFS (healthy controls) in registry
2
Researchers who are part of the network
0
Publications this data set has supported