Long COVID Research & Advocacy
RECOVER Initiative
The National Institutes of Health (NIH) created the RECOVER Initiative, a patient-centered, integrated, adaptive research network that brings together clinicians, scientists, caregivers, patients, and community members to understand, treat, and prevent Long COVID. RECOVER is unprecedented in its size and scope and includes one of the largest and most diverse cohorts of Long COVID patients in the world.
How Can I Participate?
Participants in RECOVER observational cohort studies join for several years to help understand:
- Who gets Long COVID and why
- What symptoms people have
- How Long COVID affects people’s health over time
RECOVER cohort study participants are adults aged 26 or older, pregnant people, and children and young adults aged 25 or younger. These studies do not give treatments or medicine to participants.
RECOVER clinical trials test the safety and effectiveness of treatments for symptoms of Long COVID. These studies are informed by patient Representatives and the findings from other RECOVER studies.
The clinical trials will test multiple possible treatments for Long COVID symptoms. Treatments include drugs, biologics (medicines that come from blood or plasma), medical devices, and other therapies.
Clinical Trials Center of Middle Tennessee
Recover-VITAL stands for Viral persistence and reactivation, and immune dysregulation.
Researchers are studying a possible treatment for adults who have Long COVID, which is when a person is sick months after getting COVID. We want to learn if a study drug can reduce ongoing symptoms from the virus that causes COVID.
Johns Hopkins COVID Long Study
This study is open to individuals who have been diagnosed with COVID-19 or have experienced symptoms of COVID-19 and includes a 10-15-minute survey. The survey aims to get a sense of the range of lived experiences of COVID-19 patients. It includes questions about demographics, health history, and COVID-19 symptoms, if any—both initial symptoms as well as persistent Long COVID symptoms.
University College London (UCL): Online Survey on Recovery from COVID-19
The aim of this research study is to better describe and understand the patient experience and recovery of those with confirmed or suspected COVID-19, with a specific emphasis on the Long COVID experience. The focus of this study includes participants’ backgrounds, testing, symptoms, and psychological wellbeing. A secondary aim of this study is to publish patient-driven data in order to advocate for the Long COVID population within the medical community.
Body Politic
Through a global network of COVID-19 patients, chronic illness allies, and health and disability advocates, Body Politic breaks down barriers to patient-driven whole-person care and well-being, particularly for historically marginalized communities by facilitating peer-support, cultivating patient-led research and public education, and leading community-based advocacy.
Long COVID Alliance
The Long COVID Alliance is a network of patient-advocates, scientists, disease experts, and drug developers who have joined together to leverage their collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of post-viral illness.
Solve M.E.
The Solve ME/CFS Initiative (Solve M.E.) is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid and other post-infection diseases. Their work with the scientific, medical, and pharmaceutical communities, advocacy with government agencies, and alliances with patient groups around the world is laying the foundation for breakthroughs that can improve the lives of millions who suffer from various “long haul” diseases.
Long COVID Physio
Long COVID Physio is an international peer support, education and advocacy, patient-led association of Physiotherapists living with Long COVID and allies. We work internationally across advocacy, policy, guideline development and research. Our education outputs are for anybody living with Long COVID and people wanting to learn more.
Patient-Led Research Collaborative
The Patient-Led Research Collaborative is a group of Long COVID patients and patients with associated illnesses such as ME/CFS and POTS, who are also researchers. Our mission is to facilitate patient-led and patient-involved research into Long COVID and associated conditions while following rigorous research methodology, and to advocate for policies that enable patients, particularly the most marginalized, to access care and live with dignity. We ground our work in the principles of disability justice and participatory research methods, and in the knowledge that those who experience an illness are best able to identify research questions and solutions.
COVID-19 Longhauler Advocacy Project
C19LAP is an all volunteer organization which is patient and/ or caretaker led. Our mission is to advance the understanding of Long COVID and its associated conditions (LCAC) and expedite solutions and assistance to Longhaulers and their families through advocacy, education, research and support. C19LAP hosts a total of 60 chapters and advocacy teams for each U.S. state and several focused populations groups. To join the Tennessee Long-Haulers chapter, click here.