A Long Road to Recovery after COVID Illness

GW’s COVID-19 Recovery Clinic works to put patients on the path toward normal.

By Thomas Kohout

Life before COVID-19 was busy for Rebecca,* very busy. She’s the quintessential Washington professional: a D.C. lawyer who regularly logged 60-hour work weeks, spent nights out at the Kennedy Center or at dinner parties with friends and always made time for the gym.

“My life was very active,” she said. “I tend to keep myself pretty busy, and I’m reasonably fit for a middle-aged person.”

So, in late February 2020, when she awoke feeling “off,” Rebecca attributed it to overdoing it. She had been at a dinner party the night before and thought, “I’m just a little tired, or maybe it’s the flu.” She opted to skip church that Sunday morning, thinking that with a little rest, she’d be back to herself by Monday.

The next day she decided to work from home, but by the afternoon, she was seriously ill. “The difference between the 48 hours before I got sick and after was like a light switch,” she recalled.

That was the start of a 10-day stretch Rebecca remembers as “the worst case of flu” she’d ever had. There wasn’t much reason to think otherwise. In early January 2020, the World Health Organization (WHO) had released a statement about a mysterious coronavirus-related pneumonia that the WHO was calling SARS-CoV-2 or COVID-19.

About three weeks later, on Feb. 3, the United States declared a public health emergency. However, as late as Feb. 23, 2020, according to the Centers for Disease Control and Prevention, public health agencies had detected just 14 cases in the United States, and all of those were related to international travel. 

There weren’t any reports of community spread, and Rebecca hadn’t been overseas. Besides that, she never had the extreme breathing difficulties that were already starting to fill headlines. She didn’t have to go to the hospital or go on a ventilator. She didn’t even consider going to the doctor until after her fever had broken.

Still, moving past that initial illness proved surprisingly difficult. 

“It still blows me away how hard everything got, any sort of physical exertion,” she said.

Getting to the Root of the Problem 

Though she didn’t know it at the time, what Rebecca was experiencing was Post-Acute Sequelae of COVID (PASC), otherwise known as “Long COVID.” Those suffering from PASC have reported a range of symptoms, from respiratory problems to exhaustion after even the slightest exertion, as well as nerve pain, persistent headaches, trouble concentrating or memory trouble sometimes referred to as “brain fog.” Typically, the symptoms persist for weeks or months after someone has recovered from COVID-19.

In fall 2020, Hana Akselrod, assistant professor of medicine at the George Washington University School of Medicine and Health Sciences (SMHS), along with SMHS colleagues Aileen Chang, assistant professor of medicine, and Monica Lypson, clinical professor of medicine, formed the GW Medical Faculty Associates (MFA) COVID-19 Recovery Clinic. The trio of physicians had seen a growing number of patients complaining of lingering issues following bouts with COVID-19, and the GW MFA waiting rooms were starting to fill. Since then, the clinic has seen more than 100 patients from the Washington, D.C., area and beyond.

“We’ve noticed a remarkable number of people in their 20s, 30s and 40s, who were quite healthy, fit and active,” suffering from persistent symptoms more than four weeks after getting sick, said Akselrod. “Probably three out of four are women, and they’re coming in with those long, drawn-out symptoms such as trouble breathing, nerve pain, headache, brain function issues and sometimes difficulties with physical endurance. And these are people who have essentially never been chronically ill.”

The multi-disciplinary clinic serves both those who were severely ill in the hospital and have had a difficult time recovering, as well as those whose initial symptoms were not severe, but who developed prolonged symptoms afterward.

The clinic links specialists across disciplines at the GW MFA, including pulmonology, cardiology, psychiatry and rehabilitation science to offer care for patients suffering from this previously unseen disorder. Through a comprehensive assessment, a team of physicians tries to pinpoint specific types of organ damage or an ongoing disease process, and then crafts an individualized plan for each patient.

“We know that people do better with guided and staged recovery plans,” Akselrod said. “Physical therapy and occupational therapy, in particular, play a huge role with exercises that are safe and can be built up to restore physical endurance over time.”

Forming a Network

According to a March 2021 article in the journal Nature Medicine, persistent symptoms are not uncommon among severe coronavirus infections. “We do not know yet if there are certain genetic or environmental factors that may predispose [a patient] to these phenomena,” Akselrod said. “We do know that Long COVID is not limited to a single demographic group in the U.S. and [it] is also reported in other countries.”

Systemic studies into the root of the problem are rare at best, and there isn’t much in the way of evidence-based approaches to treatment. To help bridge that knowledge gap, physician scientists at academic medical centers across the country are meeting virtually to share impressions and experiences of a clinical syndrome that they don’t fully understand.

“We walk through different treatment protocols,” said Akselrod, who joined the informal network of researchers early on. “We’re in the process of building research to try and understand the biological versus contextual aspects of this condition.”

The GW MFA COVID-19 Recovery Clinic team is also using the clinic to study PASC and share their knowledge with academic researchers and physician scientists from 55 sites across the country through the National Institutes of Health’s National COVID Cohort Collaborative.

The nationwide effort represents one of the largest collections of clinical data related to COVID-19 symptoms and patient outcomes for accelerating research on the disease. It also includes a powerful analytics platform and tool set for online discovery, visualization and collaboration. Having access to a centralized enclave of this magnitude allows research teams to study, probe and answer clinically important questions about COVID-19 that they could not have answered previously.

The clinic also is involved in a multicenter, Phase III clinical trial designed to evaluate the efficacy and safety of using the drug Reparixin to treat hospitalized adult patients with severe COVID-19 pneumonia. The drug has been used in trials studying the treatment and prevention of breast cancer, metastatic breast cancer and pancreatectomy for chronic pancreatitis.

When COVID-19 cases first began to spike nationwide in spring 2020, Chang and Adrienne Poon, assistant professor of medicine at SMHS, teamed up to establish a specimen bank housing samples from COVID-positive patients at four different times during the infection period. The patients provide additional samples at 10 weeks, six months and a year after recovery.

The specimen bank was one of several COVID-19 research initiatives across GW to receive seed funding through the Office of the Vice President for Research as well as SMHS and the Milken Institute School of Public Health at GW. The project also found financial support through a fund established to advance scientific research by Virginia Keller Gray, MS ’70, who passed away in 2018.

A Glimmer of Hope

Rebecca, after several trips to the doctor, was becoming discouraged. By that point she had been coping with the fatigue, brain fog and all the other symptoms for nearly a year. Rebecca was describing her problem as Long COVID based on descriptions she’d read in news reports. After a visit to a neurologist in December 2020 turned up nothing, her primary care physician referred her to GW’s COVID-19 Recovery Clinic.

“It was such a sense of relief,” Rebecca said, describing the first visit as a “glimmer of hope.”

“I knew that [going to a clinic affiliated with the teaching hospital] there were going to be people who are really actively engaged in what’s going on,” she said. “They weren’t just going to say, ‘Well, your lungs are clear. Go home.’ They’re going to dive into my problem.”

Akselrod repeatedly has seen a similar reaction among new patients at the clinic. “I’m just completely overwhelmed with how many people have been looking for something like this,” she said. “We have people who come in struggling to find someone who can listen to them, acknowledge that this is happening, and then try to make some kind of sense of it clinically and scientifically.”

There are reasons for hope, said Akselrod, who has been treating Rebecca at the clinic. Health care systems have become expert at developing multidisciplinary approaches toward managing patients with chronic illnesses. 

“I believe there are strategies we can adapt from other conditions to help patients with long-term symptoms after COVID-19,” she said.

After the initial comprehensive medical evaluation, Akselrod created a tailored approach for Rebecca, referring her to both physical and speech therapists to get the help and the tools necessary for her recovery. Stamina and brain fog had been her most troubling roadblocks. Although she is still not 100 percent, Rebecca says she has covered more ground in five months at the recovery clinic than she made in a year struggling on her own.

“The PT and OT provided information about how to move forward and support my recovery,” Rebecca said. “And the confirmation that there really was a problem, that this is not unusual, was so important.”

Speech therapy offered tools for cognitive rehabilitation, providing “good guidance tools,” for when she’s a little foggy, and tips for tracking how she is feeling, including what to do to feel better or conserve energy. The big lesson, Rebecca said, is to listen to her body—being more aware of how she’s feeling, how her mind is working and when she needs a break.

“One thing that always strikes me about my story,” Rebecca said, is that “if my primary care doctor had not been affiliated with GW and familiar with the [COVID-19 Recovery Clinic], I might still be trying to ‘push through’ my symptoms and, in so doing, stalling my recovery.”  

*The name of the patient in this story was withheld at her request to protect her privacy.