What is Long Covid?
Long Covid describes a collection of lingering symptoms devastating the lives of many COVID-19 survivors.
“Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis.”
— The World Health Organization (WHO)
The most frequent prolonged symptoms are persistent fatigue, brain fog, and depleted energy after even a minimal effort — having a profound impact on everyday functioning. Our models reflect that Long Covid affects an estimated 10-30% of people infected with SARS-CoV-2, including those who were asymptomatic. Researchers anticipate that many patients will have this disease for their lifetime.
Experts say the condition is a major public health concern, given the substantial impact it has on society, ranging from increased health care costs to economic and productivity losses.
Long Covid Map: Prevalence & Economic Impact
This interactive map, produced by the Solve Long Covid Initiative, supplements our whitepaper, Long Covid’s Impact on Adult Americans: Early Indicators Estimating Prevalence and Cost.
The figures represented in this map reflects data from two survey models (C-19 LAP, Whitaker) that could be used to calculate state-level data representing healthcare costs and lost earnings experienced by individuals with Disabling Long Covid, providing a glimpse into the economic impact of Long Covid on a state-by-state basis.
These are conservative estimates based on reported cases and do not reflect the potential impact of unreported cases.
Sources: C-19 LAP (2021). Mathematical Breakdown and Formulas for Long COVID Calculations. COVID-19 Long-Hauler Advocacy Project. | CDC Case Task Force (2022). United States COVID-19 Cases and Deaths by State over Time [Dataset]. Centers for Disease Control and Prevention. | Whitaker, M. et al. (2021). Persistent symptoms following SARS-CoV-2 infection in a random community sample of 508,707 people. MedRxiv [Preprint].
Based on more than 30 years of research and advocacy experience advancing the understanding of post-infection diseases, we were one of the first organizations to recognize the emerging threat of the long-term debilitating outcomes of the global COVID-19 pandemic. As early as April 2020, we called on Congress to have immediate response measures, recommending budget appropriation to the National Institutes of Health (NIH) for post-viral research. This was the early, first step in our Long Covid Initiative that now includes new and expanded programs:
Federal Advocacy: We championed H.R. 7057: The Understanding COVID-19 Subsets and ME/CFS Act, introduced by Rep Raskin in June 2020 to authorize research expansion at the NIH and enable public and medical education. Our advocacy and leadership were critical to securing $1.25 billion appropriated by Congress to NIH in December 2020, specifically for Long Covid research, diagnostics, and clinical trials. The investment enabled the NIH’s new RECOVER Initiative, funding 21 newly-announced centers dedicated to the study of Long Covid.
To address other needs in data harmonization and medical education we are supporting H.R.2754: COVID–19 Long Haulers Act, a bipartisan bill introduced by Reps. Beyer and Bergman. We also support the bipartisan COVID-19 and Pandemic Response Centers of Excellence Act (S. 2307 / H.R.4292), which addresses COVID-19 patient care, clinical research, and medical education through 15 Centers of Excellence.
Long COVID Alliance: Compelled by emerging concerns and informed by decades of experience, we co-founded the Long COVID Alliance, bringing together patient-advocates, scientists, and disease experts to inform policymakers and accelerate research. With more than 620 members, the Alliance collaborates with and informs key policymakers, scientific experts, and international thought leaders from the halls of Congress to the pages of TIME and the Washington Post. Every day, the Alliance is ensuring meaningful patient participation; advancing health equity initiatives and confronting systemic bias and racism in the Long Covid response; connecting policymakers with patients and scientists; and providing expert guidance and resources to media and policymakers.
Long Covid Registry and Biobank: In December 2020 we launched an expansion of our You+ME patient-reported database that tracks symptoms over time to include people with Long Covid. The Registry was developed with stakeholders to be an open-source foundational platform, a validated source of global data available to researchers, practitioners, and decision-makers. It currently has over 1,000 Long Covid participants, and 4,000 people with ME/CFS and controls.
Ramsay Research Grants: Our Ramsay Grant program is a seeding mechanism designed to bridge the gap for researchers who initiate new research in this space, and cannot yet apply for larger federal funding. The ROI of this program was 9X in the past 4 years, and 3 grants were awarded for Long Covid research in the 2021 cycle.
The emerging crisis is a call to action. This is a solvable, unmet need that is now impacting millions of patients and growing. Participating in and supporting Solve’s Long Covid Initiative now can lead to improved outcomes. Additional resources will:
- Expand the You+ME Registry to include genetic analysis (whole genome sequencing) to identify subgroups, pathways, and therapeutic targets that can get the pharmaceutical industry involved
- Increase the size and scope of Research Grants to expedite the transition from the bench to the bedside, including studies of repurposed drugs
- Enable a sustainable infrastructure, including support for our work with the Long COVID Alliance, create greater capacity, accelerate research by providing patient-centered insights and engagement, and improve epidemiological data
- Extend our annual Advocacy Week to Advocacy Month in 2022, create substantial opportunities for federal funding of research and medical education, and raise the voices of our growing community in the halls of power
Solve M.E. relies on the generous support of patients, family members, and friends to sustain our important work. When you support us, you stand united with thousands of like-minded people who understand the devastation of these diseases.