Exploring a New Condition

As with any new disease, there are many unanswered questions about Long COVID, said Michael Saag, M.D., an infectious disease doctor and researcher at the University of Alabama at Birmingham. “This is a frontier. We have no idea what’s around the corner,” Saag said. “As researchers, our goal is to methodically go about defining it, studying it, understanding it, and then developing treatments that we can test and see if they work.”

One of the questions is how exactly to define PASC.

In December 2020, the National Institute of Allergy and Infectious Diseases held a virtual Workshop on Post-Acute Sequelae of COVID-19 to summarize what was known about PASC and identify key gaps in knowledge. Saag chaired a session at that workshop, and Smith was part of a panel of people who shared their experiences with Long COVID.

In addition, a group called Patient-Led Research for COVID-19, which conducts research on long-term symptoms of COVID-19, defined Long COVID in a December publication as “a collection of symptoms that develop during or following a confirmed or suspected case of COVID-19, and which continue for more than 28 days.” They found that some of the most common symptoms were fatigue, symptoms that worsened after physical or mental activity, shortness of breath, trouble sleeping, and “brain fog” — trouble thinking clearly.

The biggest question, according to Saag, is what is happening in the body to cause the long-term problems. He suspects that SARS-CoV-2 somehow disturbs the immune system; instead of ramping down as it normally would after it wins the battle with a virus, it keeps on fighting against nothing.

Saag himself came down with COVID-19 in March 2020, just a few days after the World Health Organization declared COVID-19 a pandemic. He lost his senses of smell and taste and much of his hearing, and he was fatigued for months. Although his senses of smell and taste eventually came back, he still needs hearing aids a year later.

The goal of the NIH-funded research through the PASC Initiative is to find better treatments for PASC. For now, doctors can address the various symptoms — and validate patients’ concerns. “One of the main things we do now that provides a good amount of comfort to people is at least acknowledging that it’s real,” Saag said. “It’s not their imagination.”

Road to Improvement

Smith did not get that level of support. For months, she struggled with her symptoms and sought medical help. “I was turned away, I wasn’t listened to, I wasn’t respected, I wasn’t honored, and I wasn’t heard,” she said.

Smith felt that her race was a major factor in her treatment. “I’d been taught to be nice and to respect all people and, as a Black woman, to keep my head down and work really hard. ‘You’ll have a seat at the table because you won’t cause a ruckus,’” she said. “But that wasn’t saving my life.” Eventually, she realized, she had to try a new approach. “I had to become angry; I had to become very relentless about me and my care,” she said. She connected with local politicians, who looked into her case and got doctors to take her seriously. Cataract surgery brought back her vision, and by carefully managing her energy, she has gotten to a point where she can function again.

With a good job and health insurance, Smith felt she was relatively privileged. Now she wants to help people who have even more trouble navigating the health system, such as the parents of the mostly low-income children in her classes at a Baltimore City middle school. She is writing a grant for her church in northwestern Baltimore — she refers to her neighborhood as “the hood” — to become a center for educating people on Long COVID and how they can help themselves.

Before she got sick, Smith was teaching a unit on Shakespeare’s A Midsummer Night’s Dream. Her last classroom memory is of a heated debate about whether Hermia should go against her father’s will to have a relationship with Lysander. “They wanted her to run away with the person she really wanted to be with,” she said. Observers from the state board of education were in her class that week. “My kids were on fire,” she said.

Now she doesn’t know whether she will ever be healthy enough to go back to work. “I get emotional — that was the last week for me in my career, possibly,” she said. “If it has to end, I’m very happy it ended that way.”