The You + ME Registry and Biobank is a collection of clinical and patient-reported data and biological samples (e.g. blood) from people living with Myalgic Encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), people with long-COVID and control volunteers. The patient registry collates demographic and real-world, longitudinal symptom, patient-reported outcomes, and treatment data from a global cohort into a centralized repository. The Registry will also be linked to a biobank which is a place that stores tissues, blood or other samples from participants. The combination of data and biological samples will be made available to researchers so we can: (1) improve our understanding of the natural history, epidemiology, pathogenesis, resilience/susceptibility factors, disease subsets, and treatment of ME/CFS and long-COVID using a standardized set of demographic and longitudinal data; (2) build an infrastructure and resource to support a range of future research into these diseases; (3) increase opportunities for collaboration between patients, providers, researchers, and industry.~Anyone 18 years of age and older is invited to sign up. After creating a profile and completing an informed consent via an online portal, participants fill out a series of surveys, including medical history, co-occurring conditions, symptoms, quality of life, functional status, and treatments. Participants receive email reminders to complete follow-up surveys to provide researchers with information about their health over time.~The Registry also includes a mobile tracking app co-created with the community that allows participants to monitor at minimum five core symptoms of fatigue, brain fog, unrefreshing sleep, and orthostatic intolerance (on a scale of 0: symptom absent - 4: very severe) as well as any additional symptoms of their choosing, life factors, and activity. Individuals can also capture data in narrative form using a journaling function. Participants are encouraged to capture data every 3 days if possible, but can track as often as daily.~Registry data is stored in a secure, encrypted database. Data is anonymized before being made available on a secure platform for research. Biosamples collected from participants are labeled with a coded number to protect their privacy and confidentiality.~This project is supported by Solve ME/CFS Initiative. You can learn more and sign up at youandmeregistry.com.
The purpose of the You + ME Registry and Biobank is to collect clinical and patient-reported data and biological samples (e.g. blood) from people living with Myalgic Encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), people with long-COVID and control volunteers to improve understanding, diagnosis and treatment of these diseases.