Doctors in Chicago, elsewhere aim to unravel long COVID’s mysteries, but ‘science takes years’

Angela Samuel almost died after being infected with COVID-19 in March 2020.

She was in a coma for more than a month and hospitalized almost three months.

Twice, her mother, siblings and other relatives were told: You should make funeral arrangements.

“I’m eternally grateful to be here,” says Samuel, 55, of Hyde Park. “When you get a second chance at life, you have to embrace it.”

Despite her comeback, she remained too sick and too weak to go back to her job with the Cook County Department of Revenue until the following year. And she still has shortness of breath and fatigue.

Most people infected with the virus fully recover within four weeks. But some suffer with lingering effects, a phenomenon called long COVID. These are the people Dr. Robert Weinstein is looking for answers to help.

“People who have it can tell you it’s pretty miserable,” says Weinstein, an infectious disease expert at Rush University Medical Center.

So little is still known that the government doesn’t even have a definition of long COVID, calling the symptoms — which include fatigue, shortness of breath, memory problems, muscle aches and a loss of taste or smell — “consequences” of the virus.

Since the earliest days of the pandemic, doctors at Rush — working with researchers at seven other top teaching hospitals across the country — have been trying to uncover the cause and trends of long COVID through multiple government-funded studies, work that holds out a promise of answers, at least, for Samuel and others with long COVID.

They expect that it will take years to find many of the answers. A big complication, Weinstein says, is that “long COVID is not a single condition.”

But the work so far has resulted in some insights.

A key one the researchers have reached is that they strongly believe that vaccines not only help ward off death and the other worst outcomes with COVID but also likely help prevent the long-term symptoms associated with long COVID.

“It’s one of the benefits of vaccination that doesn’t always get its due,” says Dr. Michael Gottlieb, an emergency physician at Rush who was the lead researcher on a study published in January.

Tyler Pasciak LaRiviere / Sun-Times

Gottlieb and Weinstein are helping lead long COVID studies involving 6,000 patients in Chicago and across the country, work collectively known as INSPIRE — an acronym of sorts for Innovative Support for Patients with SARS-CoV-2 Infections.

The much-watched research started with Rush, Yale and the University of Washington and was expanded to include five other teaching hospitals across the country. Patient enrollment in the studies recently closed.

The Rush team wants to know more about COVID’s long-term effects and also is trying to identify any racial and socioeconomic factors that might contribute to the symptoms.

Why some people recover faster from widespread viruses than others has been a vexing question for medical researchers for more than a century, dating to the Spanish flu pandemic of 1918, Weinstein says.

With COVID, lingering effects might affect 10% to 25% of all patients. That’s still a large number of people who are suffering, given that more than 100 million people just in the United States have been infected with the virus by now.

“I routinely see patients impacted by the longer-term effects, including persistent fatigue, cognitive changes and difficulty breathing,” Gottlieb says. “We must strive to better understand and address these longer-term symptoms.”

He also wants to figure out whether some people have symptoms that stem from the stress of living through a pandemic. Some other research has suggested that depression, alcoholism and drug abuse were brought about after the isolation and worries contributed by the coronavirus.

“A lot of people are hurting after this pandemic,” Weinstein says.

Provided

Another recent study, separate from INSPIRE and led by University of Arizona researchers, suggests that people with chronic health conditions such as autoimmune diseases might have a hard time overcoming the lingering effects of COVID. Autoimmune diseases are a blanket term for a category of illnesses that confuse the body’s immune system, telling it to attack healthy cells, which leads to debilitating conditions such as rheumatoid arthritis.

All of this research aims to benefit people like Carlos Olvera. Before 2020, the Chicago resident says he was staying active even though he has rheumatoid arthritis, going to the gym six times a week. Then, in September 2020, he got COVID. He was hospitalized three times, needing oxygen the first two trips.

Two and a half years later, he says he still gets winded easily and has put on 50 pounds since he first got sick. He can climb one flight of stairs, but two is a challenge.

“I’m just now starting to normalize my breathing with new medication,” says Olvera, 49.

Pat Nabong / Sun-Times

He no longer suffers from the memory loss he experienced for two months. “I would forget something right after someone got done talking,” he says.

Olvera, a trained biologist, works for Rush, overseeing a program that provides translation services for non-English speaking patients.

He continues to consult with specialists and holds out hope for himself and others that the ongoing research will unravel long COVID’s mysteries.

“In my mind, this is temporary,” Olvera says. “It helps me that I’m in health care. For long-haulers, it’s case by case. Science takes years.”

Samuel says she, too, had a medical condition prior to being infected with COVID but still was able to stay physically active, line-dancing two to three times a week and walking several miles a day in a park.

That was until COVID, which “was like a truck ran over me.”

Now, she is back to taking line-dancing classes and is doing physical therapy. She’s thankful for her progress.

“When I was sick in the rehab, I didn’t think I would dance again,” Samuel says.

She still experiences back pains, which she didn’t have before COVID. But, after suffering from “brain fog,” she says her memory is better now.

“I still have some fatigue but not a lot,” she says. “I’m not 100% but probably 90%.

“Things happen so fast. I reflect on how important life is and family. We have to live every day like it’s our last.”

Brett Chase’s reporting on the environment and public health is made possible by a grant from The Chicago Community Trust.