By: Lizzie Geerling, PhD, Project Manager, Inflammation and Immunity, FNIH; Emma Roy, MSc, FNIH Project Manager, Translational Science, FNIH; and Jennifer Newsome, MS, FNIH Senior Project Manager, Translational Science, FNIH – with special input from Jon Douglas, a RECOVER-TLC contributor. 

For millions of people, an episode of COVID-19 is not a short-lived experience, but the start of an extended illness. This condition, known as Long COVID, has more than 200 reported symptoms. Although the illness can look very different person to person, common symptoms include fatigue, post-exertional malaise, and brain fog.  

Jon Douglas has experienced trouble breathing, severe pain with exercise, chronic migraines, and more  since acquiring Long COVID in 2021. At some points, he found himself struggling to get out of bed. “You lose your identity,” he said. “You feel like a shell of human, like you’re trapped in a body that’s not working anymore.” 

Douglas is not alone. An estimate from the Government Accountability Office suggests that Long COVID has potentially affected up to 23 million Americans — creating an urgent need for effective therapies. 

RECOVER-TLC is working to answer that call with an unparalleled effort to unite the scientific community and people with lived experience, including patients, caregivers, and advocates. As a result of that collaborative effort, four therapeutic agents are now advancing in the clinical trial process, getting us closer to the goal of finding safe, effective therapies. 

RECOVER-TLC is a joint initiative of the National Institutes of Health (NIH) National Institute of Allergy and Infectious Diseases (NIAID) and the Foundation for the National Institutes of Health (FNIH). The full name of the program is Researching COVID to Enhance Recovery – Treating Long COVID. 

A Collaborative Approach to Research 
As the official nonprofit partner of the NIH, FNIH builds and leads trusted public-private partnerships that bring together government, patients, life sciences companies, academia, and philanthropies. Together, we accelerate medical breakthroughs that no single sector could achieve alone. 

One example of FNIH’s collaborative partnerships is the Accelerating COVID-19 Therapeutic Interventions and Vaccines (ACTIV), launched in 2020 to help speed the development of treatments and vaccines. As the public health emergency began to ease, people living with lingering symptoms made it clear that research needed to continue. In 2021, NIH launched the Researching COVID to Enhance Recovery (RECOVER) Initiative, supported by a $1.15 billion investment, to study the long-term effects of COVID-19.  

Applying Lessons Learned from RECOVER 
RECOVER-TLC launched in 2024 as the next iteration of RECOVER. The new program immediately opened an online portal and invited anyone — researchers, organizations, and people with lived experience — to share ideas for Long COVID treatments. So far, 620-plus submissions have been received. Approximately 72% of the ideas have come from people living with the condition. 

A series of working groups review and score the submissions. Each group includes at least two people with lived experience, in addition to scientific experts. These efforts have resulted in the RECOVER-TLC Scientific Oversight Committee — which also includes representatives from the community — advancing an initial batch of promising agents for clinical trials. A Community Advisory Board has been activated to ensure the studies address real-world concerns and patient-centered outcomes. 

Jon first got involved with RECOVER-TLC when he saw the call for ideas for therapeutic agents that might help Long COVID symptoms. Later, he contributed to one of the working groups and also helped with protocol design for one of the RECOVER-TLC clinical trials. “Every single committee that I sit on hears me,” he said. “Everyone is so friendly, open, and honest. It just feels like you’re working with peers.” 

The public has also been invited to comment on clinical trial protocol synopses as they are developed. This feedback is then incorporated and shared back with the community through an online portal. Public input has influenced everything from the inclusion of adolescents and young adults in two of the studies (addressing a gap that many have identified), to encouraging flexible scheduling at clinical trial sites.  

In addition to seeking input from the community, RECOVER-TLC also provides information through webinars, workshops, and regular updates. The next annual workshop, set for November 4–5, 2026, in Bethesda, MD, will offer keynote speakers, interactive panels, thought-provoking discussions, and networking opportunities. 

Long COVID remains a serious condition for millions of people. Continued collaboration among researchers, healthcare providers, life sciences companies, and people with lived experience remains essential to developing effective treatments for the patients who are waiting.