Danielle Thor (left), the Zamansky family (center), and Erick Estrada (right) each recovered from COVID-19 and joined the Covid Recovery Corps to help researchers learn more about the virus. (Photo courtesy of Covid Recovery Corps)
We all have a story to tell about the impact of the coronavirus pandemic on our daily lives. The stories of people who have recovered from COVID-19, in particular, can help researchers better understand how this virus will impact our communities over time.
That’s the motivation behind the Covid Recovery Corps, a research study led by Columbia University and Sage Bionetworks, with support from the Chan Zuckerberg Initiative.
Described as a community-powered movement to better understand COVID-19, the study pairs people with scientists to answer key questions about how the body fights the coronavirus, whether and how often infection affords immunity, and why infection is more severe in some communities than others.
The vast majority of participants in the study were not hospitalized (98%), but are experiencing the long-haul symptoms that have become synonymous with COVID-like fatigue, brain fog and shortness of breath. Some subjects are also reporting new diagnoses since infection, including diabetes, new heart conditions, pulmonary hypertension, general hypertension — this study will also look at whether these new conditions may be at least in part, complications from COVID-19.
Dr. Wendy Chung, who is leading the study, hopes between the work of COVID Recovery Corps and other COVID studies, researchers will one day have the data needed to understand more about the recovery process and improvements in treatment.
“All of us [researchers] are trying to figure out if a year out — or even in some cases, 14 months out — what does this actually look like?” she explains.
Starting in the New York metropolitan area and now expanded nationally, study participants are helping build a powerful dataset that may significantly advance science and help save lives.
One of the promising early findings of the study relates to data researchers are collecting on the impact of the vaccine on overall recovery. While physiologic measurements are still needed to validate the data, study participants who are COVID long-haulers are reporting feeling better for some of their symptoms after receiving the Moderna, Pfizer or Johnson and Johnson vaccine — with zero reports of flare-ups.
Looking ahead, Dr. Wendy says she wants to recruit more study participants while keeping close track of the next round of quarterly findings: “I am interested to see what the summer data looks like in terms of, do people feel like they’ve turned the corner?”
To learn more about what it’s like to be a part of this impactful study, we recently spoke with a few COVID Recovery Corps participants.
A Medical Student Battles Long-Haul Symptoms
Danielle Thor, a second-year medical student in New York City, first began experiencing COVID-like symptoms in March 2020. She felt feverish and started to lose her taste and smell.
At the time, Danielle was not able to get tested, but felt certain she had experienced COVID-19. After she recovered, an antibody blood test revealed that she had been positive for the virus.
“I can pinpoint when and how I got it,” Danielle says. “I had a great immune system, but I was riding the crowded New York subway, going to class, with no mask on.” Because it was so early in the pandemic, mask guidelines had not yet been established.
Danielle’s taste and smell slowly returned to normal. But in July 2020, everything changed.
“One day I was fine, then I had this crazy sensation and almost passed out,” Danielle says.
She began experiencing a host of concerning symptoms, including heart palpitations, headaches, brain fogs, and finally joint pain.
This prompted her to consult with a physician, who initially diagnosed her with Lyme disease. Yet, while the medication she was prescribed helped relieve her joint pain, all of Danielle’s other symptoms stubbornly remained.
“It was so frightening and acute, and there was nothing I could do about it,” Danielle says. “I was frustrated because it has taken so long to get back to normal.”
After Danielle tested PCR-positive for COVID-19 again in July 2020, her doctor realized that she was likely a “COVID long-hauler” — one of the many individuals who continue to feel symptoms long after the days or weeks that represent a typical course of the disease.
Getting back to her pre-pandemic health has been a slow process. But, Danielle says she’s getting better over time. Her taste and smell have almost completely returned since receiving the vaccine and the intensity of her headaches and other severe symptoms have lessened.
“I started to feel my energy come back with the first dose,” she says.
When reflecting on her motivations for participating in COVID Recovery Corps, Danielle says it’s because she wanted to contribute to a better understanding of how to treat the disease.
“The more data we pull, the better we will all be able to get back to normal,” Danielle says.
She’s also ready to use the learnings from her own COVID experience to help others, she says, “As frustrating as COVID has been for me, it has completely changed my understanding of chronic illness and has made a lasting impact on how I will listen to and care for patients as a future doctor.”
A Family Manages Their COVID Recovery Together
The Zamansky family of New York City — Michael, his wife Devora. and their adult daughter Batya—were all diagnosed with COVID-19 in April of 2020. While they recovered without the need for major treatment, they later experienced long-haul symptoms.
Batya came down with the virus first. She was working as a systems engineer when she started to feel unwell. Batya went to her parents’ home to quarantine, but had a mild fever and lost her sense of taste and smell. Unfortunately, she was unable to get tested until many of her symptoms had subsided.
After Batya began to feel better, Devora, her mom, developed the same fever and flu-like symptoms along with an intense headache. She also lost her sense of taste and smell, which fortunately returned to normal after time. But, Devora and her daughter were both well on their way to recovery when they were finally able to get tested for COVID-19.
Then, Mike started feeling unwell and developed a high fever. But he didn’t get tested because, at the time, he said his insurance wouldn’t cover it. Later on, Mike did get tested for antibodies.
After completing their antibody tests, the Zamanskys wanted to help in the fight against COVID-19. Batya heard about the Covid Recovery Corps study from a friend and was instantly intrigued.
“Getting involved in the study was a good way for all three of us to make a difference,” Batya says.
Devora is also happy that she and her family were able to participate.
“We live in Manhattan, so all we had to do was to go uptown and give a little saliva and blood,” she says. “It wasn’t a big ask or a hardship for us to participate.”
As hospitalization rates decrease around the country, Mike hopes the study will help the world get back to normal.
After the Worst of the Pandemic, He Wants New York To Thrive Again
Erick Estrada’s experiences with COVID-19 came to a head after traveling to Boston for a conference in early March 2020. At the time, he was working for a sports analytics and entertainment company.
“Of course I had some doubts as this started to get a little bit more serious. But, unfortunately, about five of us went on the trip to Boston,” he says.
The work conference coincided with a basketball game — the Utah Jazz was playing the Boston Celtics. A few of Erick’s colleagues not only attended the game but interviewed some of the players. One of the players that night was Rudy Gobert, the first reported NBA player to test positive for COVID-19.
The basketball game is how Erick and some of his colleagues believe they contracted the virus.
When Erick returned to New York, he started to feel the gravity of the situation. He and his girlfriend stocked up on groceries and he went to the office to bring his work equipment home.
“I had a feeling this was going to be a long-term part of our lives.” Erick says.
About a week after the work trip, Erick began experiencing symptoms.
“My body wasn’t feeling right, from high fevers to not being able to move or eat. There was just that eerie feeling that something was wrong.”
After several days of worsening conditions, Erick went to the emergency room for treatment.
“When I got there I saw firsthand how bad it was,” he says. “There’s a lot more people out there that have battled through it and a lot of people that we’ve lost.”
Fortunately for Erick, his condition was not as severe as many of the people he saw that day in the hospital. He was sent home with medicine and the worst of his symptoms subsided within a few days. Soon enough, he started to feel like he had more energy.
Remembering the support he received from friends and family during his recovery, Erick felt compelled to give back. He says he’s on a mission to help the Covid Recovery Corps understand the impacts of this disease now and in the future.
Erick also hopes telling his story will give others the confidence to share their own.
“I think we can’t be afraid of what we went through,” he says. “We have to let people know that there’s people out there that care about them and want to help.”