This year the one-year anniversary of the first confirmed case of COVID-19 in the United States. It’s difficult to overstate the impact the COVID-19 pandemic has had on the world and on life in the United States. The past year has presented challenges none of us could have anticipated — a devastating loss of human life, increasing homelessness and joblessness, and continued anxiety about what the future will bring for our families, health, and society.
Another tragic aspect of COVID-19 is the growing number of people who contracted COVID-19 and continue to suffer from symptoms past the anticipated recovery time – even though tests might reveal no virus left in the body. Known as COVID-19 “long haulers,” they continue to struggle with debilitating symptoms, often alone, in the shadows of this devastating disease. Having escaped the worst, they nevertheless continue to struggle with symptoms that in many cases are undisguisable from ME/CFS.
Dr. Anthony Fauci, the Director of the National Institute for Allergy and Infectious Diseases, has said that patients post-COVID-19 can develop “a post viral syndrome that’s very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome.”
A recent survey reported that the most common symptoms seven months after COVID-19 infection are: fatigue, post-exertional malaise and cognitive dysfunction. These findings suggest that many “long haulers” will be diagnosed with ME/CFS. A study by Solve M.E. Research Advisory Council members Dr. Anthony L. Komaroff and Dr. Lucinda Bateman states that 10% of those suffering with long COVID could develop ME/CFS.
As we approach 23 million COVID cases in the United States, that 10% increase would at least double the number of Americans already suffering from ME/CFS by the end of 2021.
The COVID-era has been a critical time for our organization and our growing community. With the expertise Solve M.E. has about post-viral diseases and ME/CFS, we can serve as a resource to this emerging community and its pressing questions. We can also use our organizational resources and knowledge to build coalitions and create opportunities for research and funding for both the long COVID and ME/CFS communities.
In service to our community, Solve M.E. has responded to the COVID crisis with the following initiatives:
Solve M.E. COVID-19 and ME/CFS Information Center
Since the beginning of the COVID-19 pandemic, Solve M.E. has worked to share the best and most useful information. In an effort to streamline that process, we recently launched our COVID-19 and ME/CFS Information Center.
Educating Our Growing Community via Webinars
We’ve already hosted a number of webinars in our effort to shed light on what we know about COVID-19 and the connection between long COVID and ME/CFS, and we have even more in the works. In them, we highlighted our You + ME Biobank & Registry, gave voice to individuals suffering from long COVID and other chronic illnesses, and hosted post-viral disease experts to help our communities learn about the long-term effects of COVID-19.
Some of our webinars included:
- COVID Long Haulers and the ME/CFS Community: Joining Forces for Progress
- You + ME: A Registry for the ME/CFS and Long-COVID Communities
- Will COVID-19 Lead to ME/CFS in Some People?
- Women’s Chronic Illness During a Pandemic
You can watch all of our webinars here.
Authoring Letters to Congress
We have concentrated our efforts over the last several months around advocacy and increased resources for these growing communities of long haulers. We recently authored a joint letter to Congress alongside a dozen other chronic disease organizations warning about the increasing number of COVID-19 patients experiencing post-viral complications.
Securing Funding for Long COVID Research
We believe these efforts had a huge impact on the budget agreement passed over the weekend, in which Congress approved $1.15 billion for COVID and Long COVID research and clinical trials, with $100 million specifically used for the Rapid Acceleration of Diagnostics.
Leveraging the You + ME Biobank & Registry to Study COVID-19
We launched the You + ME Registry and Biobank, an online clinical study of individuals committed to identifying a cure for ME/CFS and other post-viral illnesses, to shed light on ME/CFS and post-infectious fatigue syndromes following infections such as COVID-19.
We also recently created a portal on the You + ME Registry and Biobank for people with long COVID to enter their data and track their symptoms over time using the symptom tracking app. We are also collecting data from those who had COVID-19 but aren’t experiencing long-term effects to act as controls.
We believe this data will help us understand the development of long COVID and shed light on what causes ME/CFS.
The COVID-era has been a critical time for our organization and our growing community. With the expertise Solve M.E. has about post-viral diseases and ME/CFS, we will continue to serve as a resource to this emerging community and its pressing questions. We’ll also use our organizational resources and knowledge to build coalitions and create opportunities for research and funding for both the long COVID and ME/CFS communities.