When we last checked in with you in the spring, the You + ME Registry and Biobank had just opened for enrollment. In this second Registry takeover edition of Research 1st, we’re excited to bring you an update on the enthusiastic community response so far to You + ME.

Over 1,800 of you have registered! The success of this registry is dependent on the generous support of our community members—individuals with ME/CFS, as well as healthy “controls” to create a large, rich data set from thousands of volunteers. This information will create insights into the disease, inform and influence further research, and help us identify causes and treatments. You + ME is a way to connect patients to researchers; giving patients a platform to share what they know about their disease and inform and influence research.


Someone who participates in research but does not have the health condition being studied is called a “control.” Control volunteers in You + ME play a key role by providing researchers with health information that can be compared with health information from people with ME/CFS. And we need your help to recruit more of them!

Friends and family are much more likely to join the You + ME community than those who have no association with ME/CFS, so don’t delay! Reach out today and ask your loved ones to join us. If every person currently enrolled in the registry brought just 3 others along, we would have data on more than 5,000 individuals!

Joining is easy, and takes less than an hour. Pass along the link in your next text message or email.


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