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NIH Announces Initiative to Study 'Long COVID' Symptoms

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Key Takeaways

  • The NIH announced a new initiative to study the long-term effects of COVID-19, typically referred to as “long COVID."
  • Congress allocated $1.5 billion over four years for research projects.
  • Experts say allocating funding for this research is proactive and smart.

This week, the National Institutes of Health (NIH) announced the first phase of its four-year initiative to study the long-term effects of COVID-19.

While most people seem to recover from COVID-19 in about two weeks, some may continue experiencing symptoms for weeks or months after the illness. Commonly called “long COVID,” Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases, on Wednesday revealed new terminology for the condition: post-acute sequelae of SARS-CoV-2 infection (PASC).

Sequelae

Sequelae are conditions that develop after someone has had a disease or injury.

In the announcement, NIH Director Francis Collins writes that the new initiative aims to identify how and why COVID-19 long-haulers continue to experience symptoms and to find ways to prevent and treat such effects. To accomplish this, Congress granted the NIH $1.5 billion in funding over four years to support new and ongoing research.

“Our hearts go out to individuals and families who have not only gone through the difficult experience of acute COVID-19, but now find themselves still struggling with lingering and debilitating symptoms,” Collins writes. “Through the PASC Initiative, we now ask the patient, medical, and scientific communities to come together to help us understand the long-term effects of SARS-CoV-2 infection, and how we may be able to prevent and treat these effects moving forward.”

What This Means For You

Scientists have a lot left to learn about the lasting physical and mental effects of COVID-19. By giving the condition a more precise name, PACS, and dedicating funding to studying it, experts hope to gain a clearer understanding of how and why symptoms persist, and how to best treat them.

What We Know About PASC

Approximately 30% of people with COVID-19 experienced symptoms for up to 9 months after illness, a study published last week from the University of Washington found. Of the 177 participants, nearly 85% had mild COVID-19.

"New symptoms sometimes arise well after the time of infection, or they evolve over time and persist for months," Fauci, who is also the White House COVID-19 Response Team’s chief medical advisor, said at a White House press briefing Wednesday to announce the initiative. "They can range from mild or annoying to actually quite incapacitating."

The more than 100 symptoms associated with PASC include:

  • Fatigue
  • Shortness of breath
  • Brain fog
  • Sleep disorders
  • Fevers
  • Gastrointestinal symptoms
  • Anxiety
  • Depression.

Collins writes that this “constellation of symptoms” can persist for weeks to months, and may appear well after infection or evolve over time.

“It's better to start now in gathering high-quality scientific data so that we can, number one, figure out what are the long-term sequela; number two, how common are they; and then number three, is there anything we can do to prevent or to treat them?” Joann Elmore, MD, MPH, professor of medicine at the University of California, Los Angeles, tells Verywell.

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A Proactive Research Plan

Tuesday’s announcement was the first of a series of research opportunity announcements for the new NIH PASC initiative. Scientific researchers are invited to submit proposals for funding through the program.

Elmore says that the NIH decision to dedicate resources to studying PASC now is “proactive and smart."

"This substantial of an investment is wise in that we don't want to be caught off guard,” she adds. 

One new program, the SARS-CoV-2 Recovery Cohort, will combine knowledge from long-term cohort studies started before the pandemic and new studies of people experiencing long-term effects of COVID-19. It will also support data studies using electronic health records and health system databases, coupled with studies on biological specimens to understand effects on the brain and other organs.

Elmore says the initiative encourages complementary research efforts of various scales to create a fuller picture of PASC.

“NIH is hoping to get scientists to collaborate together in a new consortium,” Elmore says. “They don't want the scientists to just propose something at their own site and analyze their own data—they want them to be willing to share and work together.”

The announcement outlines a number of key areas of study, including how many people have long-lasting symptoms, the underlying causes of these symptoms and their manifestations, and what makes some people more vulnerable to PACS than others.

Elmore says that it’s only once scientists identify and better understand the long-term effects of COVID-19 that they can begin to study how to prevent and treat those symptoms.

“I am seeing patients now that have a variety of unusual signs and symptoms, and I cannot say with certainty if these symptoms that many of them are suffering from are related to COVID-19," Elmore says. "I suspect that they are, but I need data."

The information in this article is current as of the date listed, which means newer information may be available when you read this. For the most recent updates on COVID-19, visit our coronavirus news page.

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  1. National Institutes of Health. NIH launches new initiative to study “Long COVID." Updated February 23, 2021.

  2. Logue J, Franko N, McCulloch D, et al. Sequelae in adults at 6 months after COVID-19 infectionJAMA Netw Open. 2021;4(2):e210830. doi:10.1001/jamanetworkopen.2021.0830