A recent article about COVID-19 “long haulers” in the peer-reviewed medical journal The Journal of the American Medical Association (JAMA) referenced Solve M.E. and our You + ME Registry and Biobank.
In “As Their Numbers Grow, COVID-19 ‘Long Haulers’ Stump Experts,” writer Rita Rubin details the persistent symptoms of those long haulers who have yet to fully recover from COVID-19. A number of leading medical professionals and researchers have observed that the long hauler experience echoes that of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
According to Mady Hornig (MD), a physician-scientist at Columbia University, about 3 out of 4 people diagnosed with ME/CFS report that it began with what appeared to be an infection (often infectious mononucleosis caused by Epstein-Barr virus (EBV)). She speculates that SARS-CoV-2 infection might reactivate latent EBV, triggering debilitating fatigue.
Dr. Hornig has a long history of studying the role of immune disturbances in brain conditions like ME/CFS and she points out the importance of this moment in JAMA:
“Because of the large number of COVID-19 cases occurring simultaneously, we have a unique scientific window and a huge responsibility to investigate any long-term consequences and disabilities that COVID-19 survivors may face. Doing so will provide clues and potential treatment candidates for the millions of Americans already diagnosed with ME/CFS.”
In partnership with Dr. Hornig, Solve M.E. has designed prospective studies to gather data and biological samples from people with longhaul COVID using the You + ME Registry that will help researchers study long-term effects from the disease. People with ME/CFS are already contributing their data to You + ME, so we can also explore similarities and differences of long-COVID and ME/CFS.
Read the article in its entirety here.
Help Pass Historic
We’ve compiled all the advocacy items to help you get involved with Rep. Jamie Raskin’s landmark legislation, H.R. 7057, The Understanding COVID-19 and ME/CFS Subsets Act. This will be the first piece of legislation to authorize funding from the National Institutes of Health (NIH) for ME/CFS research and education, and we hope that you demonstrate the same enthusiasm for this bill that you have with our previous advocacy efforts!
Visit this link to find a series of action items—organized by time and energy level so that you can choose the action that works for you. You can take action via emails or calls to your representatives, social media posts, or a combination! We packed this action kit with pre-written language and talking points to help make your advocacy efforts as easy and productive as possible.
Solve M.E. Offers Public Comments on
ME/CFS Data Collection
Solve M.E. recently submitted public comments on Proposed Data Collection for the Multi-site Clinical Assessment of ME/CFS (MCAM) Study. The Centers for Disease Control and Prevention (CDC) published Document Number 85 FR 46633 in the Federal Register to solicit public comments regarding standardized tests and instruments to collect data on ME/CFS patients from multiple clinical practices.
A public comment is a recommendation or concern submitted to a federal agency providing relevant feedback to a proposed rule or regulation under consideration by the U.S. government.
Public comments are an important part of the law-making process. They offer the opportunity for all people, not just lawmakers, to participate in the drafting and refining of laws.
Check out Solve M.E.’s submitted comments and policy recommendations here.