Myalgic Encephalomeyelitis, a disease commonly known as “Chronic Fatigue Syndrome” or “ME/CFS”, is a severely debilitating physiological illness. Of those suffering, 75% are unable to attend school or work, and 25% are completely homebound or bedbound with a quality of life comparable to that of congestive heart failure and cancer. Yet, there are no FDA approved treatments, biomarkers, or diagnostic tests. And in fact, as many as 45% of the Long Covid community fit the case definition for ME/CFS.
The purpose of this website is to help us understand—the shameful history of neglect, the crippling reality of the condition, and what we can and must do to help.
CDC
The Center for Disease Control protects the United States’ health from threats using science and data
NIH
The National Institute of Health aims to discover new information that will result in better health for everyone
National Academies of Medicine
Previously called the Institute of Medicine, this nonprofit, private organization was created to advise the country on relevant issues
WHO
The World Health Organization works worldwide to promote health, promote safety, and serve the vulnerable
PACE
Short for “Pacing, graded Activity, and Cognitive behavioral therapy; a randomized Evaluation”
The Lancet
One of the world’s highest impact, most prestigious academic journals
FDA
The Food and Drug Administration protects American health by overseeing food, drugs, cosmetics, animal food, dietary supplements, medical devices, biological goods, and blood products