The Open Medicine Foundation has engaged in a collaborative study that is investigating Long COVID’s potential conversion to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or ME/CFS, a chronic disease with no known causes, FDA-approved treatments or diagnostic tests.
The foundation in Agoura Hills has raised more than $28 million from private donors to find treatments for ME/CFS and related diseases. The most common symptoms of ME/CFS are post-exertional malaise even with minimal exertion, unrefreshing sleep, profound fatigue, cognitive impairment and pain.
The study of Long COVID was jumpstarted by a $1 million contribution from private donors and is being conducted through five research centers at Harvard University, Stanford University, University of Montreal, University of Melbourne and Uppsala University in Sweden.
ME/CFS affects up to 2.5 million people in the U.S. and more than 20 million worldwide. The foundation thinks the COVID-19 pandemic could at least double the domestic number of those with the condition. The research stems from Long COVID’s eerily similar symptoms to ME/CFS. Long COVID, also called Post-COVID Syndrome, is a set of symptoms that can result in illness for weeks or months following an infection from the virus, regardless of the initial infection’s severity. Long COVID has impacted 3.2 million people in the U.S. and counting, according to the Long COVID Alliance, a partner of the founation. The pandemic presented an opportunity to study how COVID-19 may develop into ME/CFS in some patients. “It opened our eyes to looking at this because with ME/CFS itself, about 70 to 75 percent of people remember having an infection that sparked and triggered ME/CFS,” said Linda Tannenbaum, founder and chief executive of the foundation.
The study’s focus is to find biological differences between patients who returned to good health after COVID-19 and patients who remained ill more than six months after infection and developed ME/CFS. A successful investigation of the link between the two illnesses could yield groundbreaking discoveries such as new drug targets, biomarkers and prevention and treatment strategies.