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Raskin Introduces Legislation to Address America’s Hidden Health Crisis

June 3, 2020
Press Release
CDC labels chronic fatigue syndrome “America’s hidden health crisis” as 90 percent of patients remain undiagnosed

(WASHINGTON, D.C.) – Congressman Jamie Raskin (MD-08) today introduced legislation that would expand and coordinate National Institutes of Health (NIH) funding to address post-viral chronic neuroimmune diseases, including chronic fatigue syndrome (ME/CFS) in the wake of the COVID-19 pandemic. As Congress continues its response to the coronavirus, the Understanding COVID–19 Subsets and ME/CFS Act, H.R. 7057, will address the predicted rise in ME/CFS diagnoses linked to increasing COVID-19 cases across the country.

When a severe infection like the coronavirus sweeps through the population, ME/CFS often follows. This legislation would allow the NIH to support research and data collection on diseases like ME/CFS in order to understand how best to diagnose and treat those who are infected, as well as to assess possible risk factors. It would additionally provide for public awareness and education campaigns to increase our understanding of the disease, with an emphasis on early diagnosis.

“While we are facing a monumentally dangerous public health crisis, we must take all necessary steps not only to stem the spread of COVID-19, but also to prevent and control its lasting repercussions.” said Rep. Raskin. “We cannot let the number of ME/CFS cases rise due to a lack of research and understanding. As we battle the coronavirus, this critical legislation will help us respond to this ME/CFS hidden health crisis.”

Rep. Raskin’s legislation is endorsed by the Solve ME/CFS Initiative.

“With so many unknowns still surrounding the long-term effects of COVID-19, researching any potential patterns that may be surfacing is crucial,” said Oved Amitay, Solve ME/CFS President and CEO. “Thoroughly investigating concerns before a crisis arises is an essential part of scientific leadership and we are proud to work with Representative Raskin and our partners at the NIH to take these first necessary steps. Because of our organization's intimate knowledge of other coronaviruses and post-viral fatiguing diseases, especially ME/CFS, the time to invest in researching potential links is now, before we reach a crisis point.”

“We are excited and humbled by Representative Raskin’s leadership in addressing research for post-viral diseases,” said Emily Taylor, Solve ME/CFS Director of Advocacy and Community Relations. “The NIH has been gradually expanding research for ME/CFS in recent years and making steady progress. While we still do not fully understand why Americans infected with COVID-19 experience post-viral fatigue — or COVID-19 fatigue syndrome, as some have called it — experience suggests that many of these patients may never fully recover. By rapidly mobilizing this research at the NIH, we hope to find answers that will help millions of COVID-19 survivors, including those who are already showing post-viral fatiguing and neuroimmune symptoms. Hopefully, this research will also identify viable treatments for the estimated 2.5 million Americans already suffering with ME/CFS.”

ME/CFS is a chronic, complex, multi-system disease characterized by profound fatigue, cognitive impairment, sleep disorders, autonomic dysfunction, chronic pain, and other symptoms often exacerbated by exertion. A report found between 836,000 and 2.5 million people in the United States suffer from ME/CFS, and up to 80 percent of cases of ME/CFS are initiated by a viral infection such as COVID-19.

Bill text is available here.

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