Myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), is a debilitating disease that is underdiagnosed, underfunded, and not well understood. The Solve ME/CFS Initiative (SMCI) was launched to actively engage the entire ME/CFS community with the two-pronged goal of improving knowledge of its causes and aggressively expanding funding to support research that will lead to the discovery of safe and effective treatments.
To gather research data and drive interest within the healthcare community, SMCI created the You + M.E. Registry and Biobank, a collection of patient-reported data from people living with ME/CFS. It became clear to those behind the initiative that in order to better understand the disease and characterize subtypes, a large, rich data set gathered over time from thousands of people with ME/CFS and healthy controls would be needed.