National ‘Long Covid’ study recruiting participants

Federally funded effort involves 80+ sites across U.S.

BOSTON, Mass. — Fatigue, shortness of breath, ‘brain fog’ and trouble sleeping — just a few of the many symptoms experienced by those with Post-Acute Coronavirus Syndrome — otherwise known as “Long Covid.”

“There’s a whole cacophony of different symptoms,” said Walter Koroshetz, MD, Director of the National Institute of Neurological Disorders and Stroke at the National Institutes of Health (NIH). “And people generally have a couple of them. It’s not just one thing.”

It’s unclear how many Americans are suffering from “Long Covid” — by some estimates up to 30 percent of infections result in lingering effects.

“Even if it is only five percent, that’s still millions of people,” said Steven Flanagan, MD, President-Elect of the American Academy of Physical Medicine & Rehabilitation. “Between four and five million based on the number of people who’ve survived COVID-19. We’re talking about a huge public health problem affecting millions of people who are having difficulty going back to doing the things that are important to them.”

For more than a year, Flanagan’s organization has been pushing the government to study “Long Covid,” issuing a “call to action” as the pandemic reached the one-year mark in March 2021.

The group’s efforts finally paid off.

This week, the NIH launched a media campaign to enroll more Americans in a massive study of “Long Covid” the agency has dubbed “RECOVER.”

“Our top priority is to try and figure out what went wrong in the recovery process in those people and how can we correct it,” Koroshetz said. “COVID-19 has affected so many millions of people, we have to look and see down the road how has COVID-19 affected our future health. Did it change our risk for dementia or heart attack or diabetes?”

In Boston, six sites are enrolling study subjects: Beth Israel Deaconess, Boston Medical Center, Brigham and Women’s, Cambridge Health Alliance, Mass General and Tufts Medical.

And they are not just looking for those experiencing “Long Covid.”

“We’re looking for people who are acutely infected now because we want to understand what is the process of recovery after COVID-19,” Koroshetz said. “So we can compare people making a good recovery versus those who are making a poor recovery.”

Within the larger framework of “RECOVER,” studies will vary depending on symptoms and severity.

“There are a series of tests that everybody gets,” Koroshetz said. “They’re called ‘Tier One’ tests.”

These would include tests on blood, saliva and stool samples. Additionally, participants will answer a health questionnaire and receive a general physical exam.

“Then we have what’s called ‘Tier Two’ studies, and those are for people who are having trouble in particular areas,” Koroshetz said. “So if you’re having say concentration, memory trouble, there will be more neurological investigations. Trouble with breathlessness and shortness of breath, then those will be more pulmonary type studies.”

“Tier Three” studies will be reserved for “Long Covid” sufferers having major issues affecting particular symptoms.

Those wishing to participate in the studies can begin the sign-up process at recovercovid.org

“This is a real problem that needs to be addressed,” Flanagan said. “We need to develop guidance and treatments. It’s so prevalent and so many people are complaining about it. That we really believe this is a real condition — and why wouldn’t we?”

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