You + M.E. will be launched to people living in the United States who are 18 years of age or older soon! It will be open to international participants and people between the ages of 13 – 17 in the months following the U.S. launch.
To sign-up for updates:
If you live in Australia, sign up for the Australian ME/CFS Biobank & Registry mailing list from our partners at Emerge Australia: http://eepurl.com/gzzB4n
If you live in the United Kingdom, visit this page on the UK ME Biobank website to get updates from our partners at CureME: https://cureme.lshtm.ac.uk/participants/
For residents of the United States who are age 13-17, or residents of other countries, use the form below to sign-up for updates.
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. To learn more, visit the You + M.E. website youandmeregistry.com
What does it mean to participate?
After signing up, people with ME/CFS and people without ME/CFS (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.