About You + ME
The You + ME Registry and Biobank is an online clinical study of individuals committed to identifying a cure for myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), Long Covid + other post-viral illnesses.
Our community is made up of people with ME/CFS, people with Long Covid (“longhaulers”) + control volunteers collectively providing the research community with critical insight into the lived experience + genetics of ME/CFS, Long Covid + other post-viral illnesses.
Our goal is to create the largest ME/CFS + Long Covid database in the world + provide researchers with the data that will make a difference + end the suffering of millions.
After signing up, you'll complete a series of surveys on your computer, including medical history, co-occurring conditions, symptoms, medications + quality of life.
After you enter this information, you’ll receive a link to download a mobile app to record symptoms, factors + activity on an ongoing basis. You can track how your symptoms change over time, what might be affecting your symptoms + share the information with your healthcare team.
You'll have the opportunity to contribute biological samples (e.g. blood).
The combination of patient-reported data + biological samples will be used by researchers from around the world to help uncover disease causes + identify treatments.
You can join the Registry without contributing biosamples. It’s optional.
It was important to us to co-create the Registry with the people who use it + we continually collaborate with participants.
We conduct surveys to identify needs, hold 1:1 in-depth interviews + integrate patients, caregivers, clinicians + researchers into our development process.
Our Health Tracking App
Capture a Moving Picture of Your Symptoms
No one knows your illness like you do.
We built a tool to record your symptoms, factors + activity on an ongoing basis to capture a moving picture of the disease + how it affects your everyday life. This creates a more robust + detailed picture than the snapshot you report to your healthcare team during an office visit.
We created the You + ME Symptom Tracking App so you can track your symptoms as well as life events (e.g. socializing with family/friends), activity levels + overall wellness. Graphing functionality allows you to visualize data trends, monitor your health + share information with your loved ones or healthcare team.
The data you share with You + ME is personal. To ensure the information is protected, we follow strict security protocols + processes.
Here's how we secure your privacy:
- We protect all the information you share with us. Your data is stored in a secure database, managed by Solve M.E. + our partners.
- Your data is anonymized + obvious personal identifiers are removed--names, addresses + other identifying information are stored separately from health information. We encrypt all participant data.
- Your personal information, including your name + anything else that can be used to easily identify you, is only seen by Solve M.E. research staff who are certified in Human Subjects Research.
- Biosamples collected from participants are labeled with a coded number to protect privacy + confidentiality.
- Researchers can access anonymized information on a secure platform. We track the activity of all researchers who use it.
- We require researchers seeking access to anonymized data in You + ME to submit an application to Solve M.E. + the You + ME Data Review Committee. The use of biosamples includes an additional level of approval + vetting.
- We will never sell any information you share with us.
- You can remove yourself from the Registry + unsubscribe from our emails at any time.
READ OUR FULL PRIVACY + SECURITY POLICY. 
Founded in 1987, Solve ME/CFS Initiative (Solve M.E.) is a non-profit organization whose mission is to make ME/CFS understood, diagnosable + treatable.
The organization’s research programs are designed to improve the ME/CFS research infrastructure + support work that will identify + untangle complex causes + symptoms so that approaches to treatment + prevention can be developed.
ABOUT US 