Welcome to the You + ME Registry mobile app!
The You + ME Registry is a collection of patient-reported data from people living with myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), people with long-term symptoms following a viral infection, and control volunteers. People living with these illnesses have invaluable information to share based on their lived experience. You + ME gives patients a platform to share what they know about their disease for research. The resulting large dataset can be used by researchers around the world to better understand disease causes and develop treatments.
After signing up for the Registry in a secure web portal, participants provide health information through a series of surveys. They also use the You + ME mobile app to record symptoms, activity, and other factors related to their disease over time.
You + ME mobile app users are asked to consistently report on a core set of symptoms: fatigue, brain fog, unrefreshing sleep, orthostatic intolerance (lightheadedness), and post-exertional malaise (PEM). Beyond the 5 core symptoms, people can self-select symptoms relevant to them for tracking in the app. There are additional screens for logging life events (e.g. socializing with family/friends), activity levels, and an overall rating of wellness. Graphing functionality within the app provides trends in easy to read, comprehensive charts that users can use to monitor their health and share with loved ones or healthcare team.
How to use:
- Sign up for the You + ME Registry, create a profile, and complete the Informed Consent: https://youandmeregistry.com
- Complete the baseline surveys in the secure web portal
- Download the mobile App
- Login using the You + ME username (email) and password you created when you signed up
- Get tracking!
Working together, we can answer the questions that are most important to people living with ME/CFS and other long-term illnesses.