Understanding Long-Term COVID-19 Symptoms and Improving Recovery – NIH Director’s Blog

posted on by Walter J. Koroshetz, MD, National Institute of Neurological Disorders and Stroke

We are in the third year of the COVID-19 pandemic, and across the world most restrictions have been lifted and society is trying to get back to “normal”. But for many people – potentially millions around the world – there is no return to normal yet.

They are still living with the long-term effects of a COVID-19 infection, known as post-acute sequelae of SARS-CoV-2 infection (PASC), including COVID long. These individuals continue to experience debilitating fatigue, shortness of breath, pain, trouble sleeping, rapid heartbeat, exercise intolerance, gastrointestinal and other symptoms, and cognitive issues. that make it difficult to perform at work or school.

It is a public health problem that desperately needs answers. Research is essential to addressing the many puzzling aspects of Long COVID and guiding us toward effective responses that protect the nation’s long-term health.

Over the past two years, the NIH’s National Heart, Lung, and Blood Institute (NHLBI), the National Institute of Allergy and Infectious Diseases (NIAID), and my National Institute of Neurological Disorders and Stroke (NINDS) along with several other institutes of the NIH and the Office of the Director of NIH, lead the COVID research to improve recovery (RECOVER), a national research program to understand PASC.

The initiative is investigating fundamental questions such as why COVID-19 infections can have lingering effects, why new symptoms can develop and what is the impact of SARS-CoV-2, the virus that causes COVID-19 , other illnesses and conditions? Answering these basic questions will help determine the underlying biological basis of Long COVID. The answers will also help tell us who is at risk for Long COVID and identify therapies to prevent or treat the disease.

The broad research scope of the RECOVER initiative is also unprecedented. It’s necessary because Long COVID is so complex, and history indicates similar post-infectious conditions have defied definitive explanation or effective treatment. Indeed, people with Long COVID report variable symptoms, making it highly unlikely that a single therapy will work for everyone, underscoring the need to pursue multiple treatment strategies.

To fully understand Long COVID, hundreds of RECOVER investigators recruit more than 17,000 adults (including pregnant women) and more than 18,000 children to participate in cohort studies. Hundreds of registration sites have been set up across the country. An autopsy research cohort will also provide additional insight into how COVID-19 affects organs and tissues in the body.

Additionally, researchers will analyze the electronic health records of millions of people to understand how Long COVID and its symptoms change over time. The RECOVER initiative also uses consistent research protocols across all study sites. The protocols have been carefully developed with input from patients and advocates, and they are designed to enable consistent data collection, improve data sharing, and help accelerate the pace of research.

From the very beginning, people suffering from Long COVID have been our partners in RECOVER. Patients and advocates provided important insights and valuable input into key protocols and research plans.

Now, with RECOVER underway, people with Long COVID, their caregivers, and community members continue to play a vital role in the Initiative. The National Community Engagement Group (NCEG) has been established to ensure that RECOVER meets the needs of all those affected by Long COVID. The RECOVER Patient and Community Engagement Strategy outlines all of the approaches RECOVER is using to engage and gather feedback from those affected by Long COVID.

The NIH recently made more than 40 awards to improve understanding of the underlying biology and pathology of Long COVID. Several important findings have already been published by RECOVER scientists.

For example, in a recent study published in the journal Lancet Digital HealthRECOVER investigators used machine learning to scour electronic health records to look for signals that could predict if someone has long COVID [1]. As new discoveries, tools and technologies continue to emerge that help advance our knowledge of the disease, the RECOVER Research Review Seminar Series (R3) will provide a forum for researchers and our partners with up-to-date information on Long COVID research.

It is important to note that post-viral conditions are not a new concept. Many, but not all, of the symptoms reported in long COVID, including fatigue, post-exertional malaise, chronic musculoskeletal pain, sleep disturbances, postural orthostatic tachycardia (POTS), and cognitive problems, occur. overlap with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

ME/CFS is a serious illness that can occur as a result of an infection and make people seriously ill for decades. Like Long COVID, ME/CFS is a heterogeneous condition that does not affect everyone equally, and knowledge gained from Long COVID research may also have a positive impact on understanding, treatment and prevention of POTS, ME/CFS and other chronic diseases.

Unlike other post-viral conditions, people with Long COVID were all infected with the same virus – albeit different variants – at a similar time. This creates a unique opportunity for RECOVER researchers to study post-viral conditions in real time.

This opportunity allows scientists to study many people simultaneously while they are still infected to monitor their progression and recovery, and to try to understand why some people develop persistent symptoms. A better understanding of the transition from acute to chronic disease may provide an opportunity to intervene, identify who is at risk of transition, and develop therapies for people who experience symptoms long after the disease has resolved. acute infection.

The RECOVER initiative will soon announce clinical trials, leveraging clinician and patient data in which clusters of symptoms have been identified that can be targeted with various interventions. These trials will focus on therapies indicated for other non-COVID conditions and new treatments for long COVID.

Through extensive collaboration among the multiple NIH institutes and offices contributing to the RECOVER effort, we hope that critical answers will soon emerge. These responses will help us recognize the full range of outcomes and needs resulting from PASC and, more importantly, enable many people to fully recover from COVID-19. We are indebted to the over 10,000 subjects who have already signed up for RECOVER. Their contributions and the hard work of RECOVER investigators offer hope for the future to the millions still suffering from the pandemic.


[1] Identifying Who Has Long COVID in the United States: A Machine Learning Approach Using N3C Data. Pfaff ER, Girvin AT, Bennett TD, Bhatia A, Brooks IM, Deer RR, Dekermanjian JP, Jolley SE, Kahn MG, Kostka K, McMurry JA, Moffitt R, Walden A, Chute CG, Handel MA; N3C Consortium. Lancet numbers health. 2022 Jul;4(7):e532-e541.


COVID-19 Research (NIH)

COVID long (NIH)

RECOVER: COVID research to improve recovery (NIH)

NIH is building a large national study population of tens of thousands to support research into the long-term effects of COVID-19», NIH press release, September 15, 2021.

Director’s Messages (National Institute of Neurological Disorders and Stroke/NIH)

To note: Dr. Lawrence Tabak, who serves as NIH Director, has asked heads of NIH Institutes and Centers (ICs) to contribute occasional guest posts to the blog to highlight some of the interesting science that they support and lead. This is the 18th in the series of NIH IC guest posts that will continue until a new permanent NIH director is in place.

About Jimmie P. Ricks

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