Discovery is driven by researchers examining patient data and correlating patient reported symptom data with biological and genetic aberrations. The larger the data set available, the higher the probability that meaningful discoveries can be made. We created the You + ME Registry and Biobank for researchers like you to uncover possible causes and treatments of ME/CFS.
Researchers who want to use the data, the biospecimens, or both will submit an application to Solve M.E. The application will be reviewed by the Registry Community Advisory Committee. Researchers who use the data will be required to share their methods and findings back with the community to allow others to build on their discoveries.
“Until very recently, doctors studying people with a particular disease had no practical way of regularly checking in with those people. Smart mobile devices solve that problem: people can report their symptoms, and life events that might have affected their symptoms (like exercise and diet)—and do it as often as they want. The information then can be transmitted electronically to the research team. In my opinion, the You + ME app will provide a deeper level of understanding of this terrible disease.”
“I am an early career-stage researcher anxious to work on the complex questions underlying the biology of ME/CFS. A major barrier to research in this field is an accessible source of biological samples and associated health information. The You + ME Registry and Biobank is an impactful solution that will initiate, accelerate and transform ME/CFS research.”
“As a researcher in the field of genomics and bioinformatics, I work to identify genomic patterns in disease and translate these findings to the clinic. These studies require a wealth of clinical and patient-reported data that can be fed to powerful algorithms. A registry and biobank like You + ME provides data needed to support this type of work and a range of other studies in ME/CFS. Even more importantly, the data sharing and collaborative spirit of You + ME hold great promise for bringing all stakeholders in ME/CFS research together to work on the questions that will transform our understanding of this disease.”
Discover the latest research news and hear from
other researchers using data from You + ME
Want to know more about recent research in ME/CFS? Need to learn more about best practices in ME/CFS research? Use the buttons to navigate to information in the Solve M.E. Researcher Toolkit.
Click here to download our researcher toolkit
Have Questions? Get in touch with us.
Ready to dive into the data? Sign up to join the You + ME community
People with ME/CFS in registry
People without ME (healthy controls) in registry
Researchers who are part of the network
Publications this data set has supported