About You + M.E.

The You + M.E. Registry and Biobank is a collection of patient-reported data and biosamples (e.g. blood) from people living with myalgic encephalomyelitis (also known as chronic fatigue syndrome, or ME/CFS) and healthy controls.

After signing up, participants complete a series of surveys on their computer, including medical history, co-occuring conditions, symptoms, medications, and quality of life.
After signing up, participants complete a series of surveys on their computer, including medical history, co-occuring conditions, symptoms, medications, and quality of life.

Once this information has been entered, ME/CFS participants will receive a link to download a mobile app to record symptoms, factors, and activity on an ongoing basis.

Biological samples will be collected from people with a confirmed case of ME/CFS and healthy controls.
Biological samples will be collected from people with a confirmed case of ME/CFS and healthy controls.

The combination of patient-reported data and biological samples can be used by researchers from around the world to help uncover causes and subtypes of ME/CFS, and identify possible treatments.

It was important to us to co-create the Registry with people who will be using it.
It was important to us to co-create the Registry with people who will be using it.

To this end, we conducted surveys to identify participant needs among hundreds of people, held 1:1 in-depth interviews, and integrated people with ME/CFS, caregivers, clinicians, and researchers into our app development and beta testing.

We hope the end result will bring impactful change for the ME/CFS community!

The data that participants enter into You + M.E. is personal. To ensure the information is protected, we follow strict security protocols and processes.

Steps we take to secure your privacy:

  • We protect all information that you provide us. Your data is stored in a secure database, managed by Solve M.E. and our partners.

  • Your data is anonymized and obvious personal identifiers are removed; meaning names, addresses, and other identifying information is separate from the health information. We encrypt all participant data.

  • Your personal information, including your name and 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 their privacy and confidentiality.

  • Anonymized information is made available on a secure platform for research. We track the activity of all researchers who use it.

  • We require researchers seeking access to anonymized data in You + M.E. to submit an application to Solve M.E. and the You + M.E. Data Review Committee. The use of biosamples includes an additional level of approval and vetting.

  • We will never sell any information you provide us.

  • You may remove yourself from the Registry and unsubscribe from our emails at any time.

About the App

Capturing a Moving Picture of ME/CFS

The people who know the most about their illness are the people who are living with it every day. In setting up our registry, we wanted to create an opportunity for people to record their symptoms, factors, and activity on an ongoing basis.

The people who know the most about their illness are the people who are living with it every day. In setting up our registry, we wanted to create an opportunity for people to record their symptoms, factors, and activity on an ongoing basis to capture a moving picture of the disease and how it affects everyday life, as opposed to the single snapshot of the symptoms you might report to your healthcare team during an office visit.

To facilitate this ongoing symptom tracking, we created a mobile symptom tracking app. Participants are asked to consistently report on a core set of symptoms:

Fatigue, brain fog, unrefreshing sleep, lightheadedness, and post-exertional malaise (PEM).

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We collected perspectives from individuals with ME/CFS across the severity spectrum via a survey and informational interviews. These five symptoms emerged as priorities for ongoing tracking. This core list also maps to the Institute of Medicine diagnostic criteria.

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 participants can use to monitor their health and share with loved ones or healthcare team.

Founded in 1987, Solve ME/CFS Initiative (Solve M.E.) is a non-profit organization whose mission is to make ME/CFS understood, diagnosable and treatable.

The organization’s research programs are designed to improve the ME/CFS research infrastructure and support work that will identify and untangle the complex causes and symptoms so that approaches to treatment and prevention can be developed.

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