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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. The WHO estimates that 10% to 20% of COVID-19 patients experience lingering symptoms for months following infection. Researchers anticipate that many patients will have this disease for their lifetime.

Sources: (Left) A clinical case definition of post covid-19 condition by a Delphi Consensus. World Health Organization., Oct. 2021 (Right) Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. Davis et al, Lancet Jul. 2021

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.

Click here to view a repository of Long Covid research.
Click here for information on our Long Covid events and presentations.
Click here to browse our pre-print analysis of the range of potential Long Covid cases in the U.S.

Our Work

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 AdvocacyWe 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.  


Join Us

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

Please note that, due to transaction costs, the minimum cash donation amount accepted is $5.00.

 

To give via check, please mail it to:

Solve ME/CFS Initiative
350 N Glendale Avenue
Suite B #368
Glendale, CA 91206

Tax ID Number: 56-1683450

For donor information, contact:
Solve M.E. Development Department
giving@solvecfs.org
(704) 364-0016 Ext 207

For more information on the Solve Long Covid Initiative, contact us here.