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.

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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.

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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.

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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.

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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:

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

Join us! Together, we will create impactful change for the ME/CFS + Long Covid communities.