We’re so excited for the Registry to be available soon! In the meantime, be sure to “pre-register” if you haven’t already. Simply enter your contact info in the form below so you’re the first to know when it’s ready to accept participants.
Join the You + M.E movement!
The You + M.E. Registry and Biobank is a resource of detailed health information and biological samples from people living with myalgic encephalomyelitis (also known as chronic fatigue syndrome, or ME/CFS) and healthy controls. You + M.E. is designed to facilitate data sharing and increased collaboration between all those who contribute to ME/CFS research: patients, healthy controls, clinicians, and scientific researchers.
What does it mean to participate?
After signing up, people with ME/CFS and healthy controls complete a series of surveys on their computer, including medical history, medications, and quality of life. Participants might also be asked to provide a blood or saliva sample. The combination of data and biosamples can be used by researchers from around the world to help uncover causes and subtypes of ME/CFS, and identify possible treatments.
I don’t have ME/CFS. Why should I participate?
To understand what causes a disease, it is often helpful to compare health and genetic information between those who have a particular disease, and those who do not. Any differences that can be seen between healthy individuals and those who are suffering with ME/CFS may be the causes of what’s gone wrong. By contributing your health information and biosample (e.g. blood or saliva) you can help researchers understand causes of ME/CFS and potentially identify treatments.
How is data protected?
The privacy and security of participant data is of paramount importance. Health information is anonymized and data is stored in a secure, encrypted database. Participants can drop out of the Registry at any time.