Boston hospitals unite to unravel mystery of ‘Long COVID’

BOSTON, Mass. — Two years after the pandemic began, six Boston healthcare facilities are joining forces to study why so many who get infected with COVID-19 continue to suffer symptoms, long after the virus is gone.

The phenomenon has become known as ‘Long COVID’ -- but goes by the official diagnosis of PASC -- post-acute-sequelae of SARS-CoV-2.

The Boston COVID Recovery Cohort was organized under the National Institutes of Health “Researching COVID to Enhance Recovery” (RECOVER) Initiative. Participating institutions include Brigham and Women’s Hospital, Massachusetts General Hospital, Tufts Medical Center, Boston Medical Center, Cambridge Health Alliance and Beth Israel Deaconess Medical Center.

“The current study is more of an observational study,” said Principal Investigator Bruce Levy, MD, chief of Brigham and Women’s Pulmonary Division. “Trying to learn the full clinical spectrum of Long COVID, risk factors for the development of Long COVID and a window into the biology, the underlying mechanism for why people develop Long COVID.”

Down the line, the study will focus on potential treatments for the symptoms of Long COVID-- which seems capable of involving numerous bodily systems.

“The symptoms that we see most commonly include exertional fatigue, shortness of breath, brain fog with memory issues, joint pain and chest pain,” said Levy.

Lingering issues with smell and taste are also common, he said.

Maria Novicki can add one more to that list: headaches. That was her initial symptom when she came down with COVID-19 in March of 2021 -- and she’s had them ever since.

“To this day, I’m almost a year out, I still have a headache every single day of varying intensity,” Novicki said. “It got to the point where I said I can’t handle this and I went to the emergency room and said, I need help.”

Novicki, of Lebanon, ME, eventually sought that help in Boston, at Brigham and Women’s clinic devoted to Long COVID. She was not alone.

“Our patients were coming to clinic in really large numbers for help,” Levy said. “And this was something that was shared across the whole city at all the different academic health centers.”

In fact, Levy said every Long COVID clinic in the six-institution collaborative is experiencing a huge surge in patients needing help.

That’s what gave the various institutions the idea to collaborate on getting to the bottom of Long COVID -- which has the potential to put an enormous strain on the healthcare system, just as acute infections did.

“If we said that one percent of people develop Long COVID -- and that’s certainly an underestimate -- we’ve had more than one and a half million cases in Massachusetts alone,” Levy said. “That’s already 150,000 people that are at risk at one percent.”

Levy said it’s likely the number affected by Long COVID is in the range of five to ten percent -- potentially a huge problem for the U.S. .

“Nationally, there are 80 million cases of COVID-19,” he said. “So there are hundreds of thousands if not millions of people that are experiencing Long COVID.”

And the symptoms, as Maria Novicki knows, can be life-altering.

“I have not worked since the beginning of May, 2021,” she said. “At first it was just the headaches. But then it was all these other symptoms that started to appear out of nowhere.”

Chief among them: profound fatigue -- Novicki said even lifting her leg to walk can sometimes be a challenge.

Another challenge is getting others to understand that what may not be apparent is real. Novicki said she’s been asked many times why she can’t work and why she’s so tired. She’s hoping the Boston study will answer clinical questions, of course -- but also will help everyone understand Long COVID is not imaginary.

“This study is what I think is going to help get awareness out there,” she said.

What Levy is hoping for is broad participation -- including from those communities hit disproportionately by the pandemic.

“Especially those black and brown communities,” Levy said. “We’re very much looking for a broad range of the population -- all that were infected -- to join us if you’re experiencing Long COVID.”

FOR MORE INFORMATION ABOUT PARTICIPATING IN THE LONG COVID STUDY Visit Boston RECOVER

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