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What is long COVID and who’s at risk? This NIH project might help you find out

You might have heard about the COVID news in recent weeks: A Scottish study found that approximately Half of the people infected are SARS-CoV-2.Six to 18 months after the infection, they have not fully recovered. This is consistent with what doctors and patients have been saying for many months. Long COVID can be a serious problem, and many people are trying to overcome it. 

But it’s tough to find treatments for a disease that is still so ill-defined (SN: 7/29/22). One major research initiative in the United States is aimed at changing that. And one of my coworkers, Science News’ News Director Macon MorehouseYou can get a glimpse of the process by clicking here

Morehouse has donated 15 vials blood, two urine specimens, a sample saliva and 15 vials. Technicians measured her blood pressure and oxygen level. They also measured her waist circumference, height, and weight. Then they counted how many times she could go from sitting to standing in thirty seconds. Morehouse is not ill, and she’s not collecting data about her health. She’s doing it for science.

Morehouse is participating in a long COVID study at Howard University in Washington D.C. It’s part of a many-armed giant of a project with an eye on one thing: the long-term health effects of COVID-19. The National Institutes of Health started the study in 2013. RECOVER InitiativeThe goal is to enroll approximately 60,000 children and adults. Morehouse at Howard is the volunteer No. 182.

She’s somewhat of a unicorn among study participants: As far as she knows, Morehouse has never had COVID-19. Stuart Katz, a cardiologist at NYU Langone Health and a RECOVER leader, said that around 10 percent of participants would include people who have escaped the virus. Scientists continue to sign up volunteers, but “omicron made it harder to find uninfected people,” he says.

Morehouse is needed by RECOVER scientists so they can compare them to people with long COVID. That might reveal what the disease is — and who it tends to strike. “Our goals are to define long COVID and to understand what’s your risk of getting [it] after COVID infection,” Katz says. These results could be the first step towards developing treatments.

Tight timeline

Within the pandemic’s first year, doctors noticed that some COVID-19 patients developed long-term symptoms such as brain fog, fatigue and chronic cough. Katz joined other doctors and scientists to discuss the facts. It turned out that there was very little. “This is a novel virus,” he says. “Nobody knew what it could do.” Around the same time, Congress OK’d $1.15 billion for the NIH to study COVID-19’s long-term health consequences.

Five months later, the agency had given nearly $470 million NYU Langone Health as a hub for its COVID studies. “The whole thing was on a very, very compressed timeline,” Katz says. NYU quickly crafted a study plan for three main groups, including adults, children/families, and tissue samples taken from patients who died from COVID-19. It wasn’t your typical research project, Katz says. “We were charged with studying a disease that didn’t have a definition.”

Today, RECOVER has enrolled only half of the target 17,680 adults. Katz hopes to see this number reach 50 percent by spring 2023. The child-focused section of the project still has a long way to go. The goal is to enroll nearly 20,000 children; so far, they’ve got around 1,200, says Diana Bianchi, director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development and a member of RECOVER’s executive committee.

Some scientists and some patients RECOVER has been criticizedMoving Too slowly. Katz, who is a long-term COVID patient, says he understands. “We started a year and a half ago, and we don’t yet have definitive answers,” he says. “For people that have been suffering, I can understand how it’s disappointing.”

But for RECOVER — with more than 400 doctors, scientists and other experts involved, roughly 180 sites across the country enrolling participants and a grant timeline that scuttled the usual order of events — the old saying about building the plane while flying it fits, Katz says. “We are working very, very hard to move as quickly as we can.”

You are looking for answers

Recent developments have seen other aspects of this initiative shine. Analysing electronic health records showed that kids under 21 may have a higher chance of being diagnosed with COVID-19. most at risk for long COVIDScientists reported in JAMA PediatricsIn August. A different study of health records suggests that Long COVID protection is possible for adults who are vaccinated.Even if they had a breakthrough illness, it is possible to do this. Scientists reported this month’s finding at medRxiv.org in a study which has not been peer-reviewed.

These studies draw on data already collected. The majority of RECOVER studies will take longer because scientists will continue to follow patients for years and analyze data. “These are observational, longitudinal studies,” Katz says. “There’s no intervention; we’re basically just trying to understand what long COVID is.”

Katz anticipates seeing early results in the fall. Scientists should have a rough definition for long COVID by then. This could be helpful to doctors trying to diagnose the condition. By the end of the year, Katz says RECOVER might also have answers about viral persistence — whether coronavirus relics left behind in the body somehow reboot symptoms.

Kanecia Zimmerman (a pediatric critical-care specialist) is leading the effort at Duke Clinical Research Institute, North Carolina. One of the first trials will examine whether an antiviral treatment that removes SARS-CoV-2 can help patients suffering from persistent symptoms. 

Though RECOVER is a major effort to understand long COVID, progress will require research — and ideas — from a broad group of scientists, says Diane Griffin, a microbiologist at the Johns Hopkins Bloomberg School of Public Health in Baltimore and member of the Long COVID Research InitiativeThe project is being led by a third party, namely. “Just because we’ve invested in this one big study, that’s not going to give us all the answers,” she says.

But information from study participants like Morehouse and the nearly 10,000 other adults who’ve already enrolled in RECOVER will help. Griffin believes that support for long COVID research should continue to be vital in the interim. “That’s the only way we’re going to eventually figure this out.”

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