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) and other post-viral illnesses. The community is made up of people with ME/CFS, people with long-term symptoms of COVID-19 (“longhaulers”), and control volunteers collectively providing the research community with critical insight into the lived experience and genetics of ME/CFS and post-viral illnesses.

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

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

Participants will have the opportunity to contribute biological samples (e.g. blood).
Participants will have the opportunity to contribute biological samples (e.g. blood).

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

It was important to us to co-create the Registry with people who will be using it - and we are continually engaging participants in co-creation.
It was important to us to co-create the Registry with people who will be using it – and we are continually engaging participants in co-creation.

We conduct surveys to identify participant needs, hold 1:1 in-depth interviews, and integrate patients, caregivers, clinicians, and researchers into the registry development process.

The data that participants enter into You + ME 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 + ME to submit an application to Solve M.E. and the You + ME 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 Symptoms

In setting up the 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.

No one knows your illness quite like you do.

In setting up the 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 ongoing symptom tracking, we created the You + ME Symptom Tracking App. Here, participants are able to track their experience of a set of symptoms core to You + ME, including level of fatigue. Beyond these core symptoms, participants can also add other symptoms to customize their list for tracking.

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 allows participants to visualize data trends so they can monitor their health and share information 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.

Find out more

Join the You + ME movement! Let’s create impactful change for the ME/CFS and COVID longhauler communities, together.