A consortium of Boston area hospitals has joined an ambitious national effort to solve the puzzle of “long COVID,” an often-debilitating syndrome in which symptoms such as fatigue and brain fog persist long after COVID-19 infection.
The Researching COVID to Enhance Recovery, or RECOVER study, aims to understand the prevalence, risk factors, biological mechanisms, and possible causes of what doctors refer to as PASC, or Post-Acute Sequelae of SARS-CoV2.
The Boston hospitals, led by Brigham and Women’s, announced their participation Monday. They are involved in the aspects of the study that focus on adults and on performing autopsies. Massachusetts General Hospital is also leading the data management.
The six Boston-area sites are: Beth Israel Deaconess Medical Center, Boston Medical Center, Cambridge Health Alliance, Tufts Medical Center, the Brigham, and Mass. General.
“We don’t really understand where we’re at with this post-pandemic pandemic,” said Dr. Bruce Levy, chief of Brigham and Women’s Pulmonary Division, who will lead the project at his hospital. “The clinical imperative and the absence of knowledge … have really brought the scientific community together in new and exciting ways for broad collaborations we haven’t seen before.”
The study has spurred hospitals to work together, potentially reaping benefits beyond the study itself. “We’ve already started up joint conversations to share clinical decision-making … to bring the best information possible to our patients,” Levy said.
The study of adults, Levy said, will “look forward and backward.” It will recruit people who are in the throes of a new COVID infection and follow them forward over time, and study people who already have long COVID and look backward at the trajectory of their illness. All will be followed for three years.
Long COVID symptoms vary, but often include pain, headaches, fatigue, “brain fog,” shortness of breath, anxiety, depression, fever, chronic cough, and sleep problems.
Nationally, the 15 research groups studying adults aim to recruit 17,680 participants, with about 900 of them in the Boston area.
Levy said the researchers measure how often people get long COVID and how long it lasts; identify the full spectrum of symptoms and what factors might influence why some people get long COVID and not others; and develop a better understanding of the condition’s biological mechanisms — that is, what exactly goes awry in the body when long COVID occurs.
In addition to working with patients the hospitals already have contact with, the study leaders are setting up community partnerships that will engage people in vulnerable communities that were hardest hit by COVID-19.
Those partnerships will build on existing efforts that sprang up to handle testing and vaccination in underprivileged communities. And they could end up establishing lasting structures that would support the communities on a variety of health issues.
“That would be amazing and desperately needed,” Levy said.
Mass General Brigham also is participating in the arm of the study that will perform autopsies on people who died after having COVID, examining tissues that are difficult to obtain from living people such as heart, brain, and nerves.
The autopsy researchers will seek to answer a crucial question: Does the virus persist in the body long term? “Early on there was an assumption that COVID would be more like the flu,” which gets cleared from the body after recovery, said Dr. James R. Stone of Mass. General, one of the study leaders. “Now there’s a concern that SARS-CoV2 may be more like chickenpox. It may be more like a virus that can stay within you for a long period of time and might reactivate.”
Mass. General researchers showed last year that the virus can be detected in the hearts of people who died of COVID-19 up to two months after infection, Stone said. But does the persisting virus lead to long COVID symptoms? Other culprits are possible, including tissue damage, clotting, and immune system dysfunction.
The researchers will seek permission from the relatives of the hospitals’ deceased patients, but they also want to get the word out more widely. Anyone whose relative dies after suffering from long COVID can participate if they act within 24 hours of death.
In late 2020, Congress awarded $1.15 billion over four years to the National Institutes of Health to examine the long-term effects of COVID-19, a project later called RECOVER. While the overall dollar amount has been announced, it’s not clear how much money the Boston group will receive.