What is Long COVID?
Studies suggest that conservatively, one in three individuals who contract COVID-19 are likely to experience lingering symptoms or to develop new symptoms 28 days or longer after the initial onset of disease. This lingering condition is often referred to as Long COVID, PASC (Post Acute Sequelae of SARS-CoV-2) or Post COVID Syndrome. Long COVID symptoms can vary in intensity, type and duration depending on the individual.
What symptoms are experienced by someone with Long COVID?
Long COVID symptoms can involve various organ systems and the severity of symptoms can vary widely. Some common symptoms include fatigue, post-exertional malaise, hair loss, chronic pain, brain fog, neurological tremors, depression, anxiety, cardiac impairment, pulmonary impairment, and altered sense of taste or smell.
A symptom checklist is available on the Survivor Corps website.
In summer 2020, Survivor Corps published the first study on patient-reported experiences with COVID-19 recovery and post-COVID complications, documenting a multitude of physical and mental health symptoms. These findings have been confirmed by other long COVID studies and documented by physicians.
In December 2020, the NIH held their first conference on Long COVID, followed by discussions at the World Health Organization and other medical societies.
The CDC has created a Post-COVID Conditions webpage [last updated September 16th, 2021].
Mayo Clinic maintains an informational page on the long-term effects of COVID-19 [last updated October 22nd, 2021].
Johns Hopkins provides updated long COVID information on on their website [last updated December 8th, 2021].
Can anyone get Long COVID?
Yes. Both children and adults can experience long COVID symptoms. Long COVID symptoms can develop after severe, mild or asymptomatic cases of COVID.
How do children and adolescents experience Long COVID?
See our FAQs on Long COVID in Kids.
How long do symptoms last?
Symptoms may resolve on their own over time, or remain a constant struggle for survivors for many months or longer. See our publications page for more information on the timing, duration and health impacts of Long COVID.
How are Long COVID symptoms treated?
Successful medical intervention strategies are in development. A number of specialized, multidisciplinary, or multi-subspecialty care centers (referred to on our page as ‘Post-COVID Care Centers’) are opening in the US and around the world, but concrete care pathways are still very much a work in progress. Long COVID complications vary greatly, and the disease’s full long-term impact is still unknown.
An array of specialists work with patients including: Primary Care Physicians, Behavioral Health Specialists, Pulmonologists, Neurologists, Cardiologists, Gastroenterologists, ENTs, Pain Specialists and other physicians. Rehab and recovery therapies are being offered, as well as mental health support. Survivor Corps has resources for patients about where to find care and tracking symptoms and providers about how to structure a multidisciplinary center. The CDC has released initial treatment guidelines for Long COVID patients.
What causes Long COVID?
What causes some people to fully recover from COVID and others to develop Long COVID symptoms is unclear and a number of theories are being explored including organ damage from acute infection, ongoing inflammation, a persistent viral reservoir, an inadequate antibody or T cell response, and other possibilities.
What research is being done to help increase our understanding of Long COVID?
COVID’s impact on multi-organ systems, the autonomic nervous system, mental health and ability to function are all being explored. Public health considerations, such as Long COVID’s impact on communities that experience disparities in health care, job, food and housing security as well as the immunocompromised, are of particular concern. Some studies on Long COVID have already begun, and additional studies are expected in the future that focus on Long COVID symptoms, care and recovery in both children and adults. To find out about ongoing research, visit our Research pages.
What is the NIH doing about Long COVID?
In February, 2021, the NIH issued a call for research proposals funded by a $1.15 billion investment to identify the causes of Long COVID, to develop ways of treating individuals who don’t fully recover, and, ultimately, to prevent the disorder. Many proposals were received.
In June of 2021, the NIH invited certain research institutions that submitted proposals to join a consortium that will design the measures and platforms under which future research will take place. Actual grant awards are expected to take place after this initial work is completed. In the meanwhile, a number of research studies on Long COVID are taking place. The NIH is spearheading an effort to track the recovery paths of those with COVID through an app, known as the COVID Symptom Study, and their RECOVER Initiative seeks to understand, prevent and treat Long COVID symptoms.
You can find out about research opportunities and how to get involved on our Research pages.
What do we still need to learn about Long COVID?
Long COVID has not been fully characterized and the trajectory of symptoms and long-term outcomes are unknown. Treatments and care strategies for Long COVID are being designed, monitored and tested. Longitudinal studies tracking ongoing symptoms are in their most nascent stages.
What is Survivor Corps doing to help further research?
Survivor Corps is committed to patient centered outcomes research and has led the way in developing and publishing patient-led research. Patient narratives and self reported experiences are integral to long COVID research and to developing an understanding of the condition. Open-ended inquiry is a critical first step in accurately and comprehensively characterizing long COVID and ensuring that medical treatments and management strategies best meet the needs of individual patients and help to mitigate health impacts of this condition. Survivor Corps is partnering with researchers working on Long COVID, helping to design studies that represent the patient voice, patient priorities and patient needs. We are working to connect as many COVID Survivors with research opportunities as possible. The advancement of science depends on COVID Survivors. If you would like to participate in research, please let us know by emailing Research@survivorcorps.com.
Is COVID the only virus that causes long-term symptoms?
COVID is not the only virus that causes long term symptoms in patients. Long COVID has been likened to other post-viral conditions such as myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), dysautonomia or postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), Multisystem Inflammatory Syndrome in Children (MIS-C) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS).
Can someone with Long COVID get long term disability?
Some Long COVID patients have been successful pursuing disability, but it can be quite a battle. See the report put out by Kantor & Kantor for guidance on What to do When Your Long Term Disability Insurance Claim is Denied.
