Across the world, people and governments are settling into a life that none of us were prepared for. For the first time, the global community is learning what life within four walls feels like—a reality that those living with ME/CFS know all too well.

Since its earliest recorded diagnosis in the 19th century as ‘neurasthenia’, ME/CFS has known many names. Once mistaken for other conditions, it is thanks to the resilience and perseverance of the ME/CFS community that the first formal case definition for ME was proposed in 1988 by Dr. Melvin Ramsay, who correctly understood the condition to be physical—not psychological—in nature.

Since that time, researchers studying the condition have gathered increasingly clear evidence that ME/CFS develops and is sustained by underlying biological mechanisms. Medical professionals around the world have described disease presentations, clinical features, and abnormalities across body systems in patients. Their work demonstrates that ME/ CFS strikes people from every age, racial, ethnic, and socio-economic background.

However, despite decades of research, the root cause of this condition is still not fully understood. There is no diagnostic test, no FDA-approved treatment, and no cure.
Key questions remain: Why is there such a broad range of symptoms? Is this a single disease or a cluster of conditions? Why is it that some people respond to treatments and others do not?

You + M.E.—an ME/CFS registry and biobank—aims to capture insights from tens of thousands of community members like YOU, paving the way for a global big data movement in ME/CFS.


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