A Long Road to Recovery after COVID Illness
Editor’s note: The name of the patient in this story was withheld at her request to protect her privacy.
Life before COVID-19 was busy for Rebecca [not her real name], 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 says. “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 recalls.
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.
Roughly 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 says.
Getting to the Root of the Problem
Though she didn’t know it at the time, what Rebecca was experiencing was Post-Acute Sequalae of COVID (PASC), otherwise known as Long COVID. Those suffering from PASC have reported a range of symptoms, from respiratory problems to exhaustion from 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, MD, MPH, assistant professor of medicine at the George Washington University (GW) School of Medicine and Health Sciences, (SMHS), along with GW SMHS colleagues Aileen Chang, MD, MPH, assistant professor of medicine, and Monica Lypson, MD, MHPE, clinical professor of medicine, formed the GW Medical Faculty Associates (GW MFA) COVID-19 Recovery Clinic. The trio 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, says 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 explains. “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 Nature Medicine, persistent symptoms are not uncommon among severe coronavirus infections. Those who experienced severe acute respiratory syndrome in 2003 or Middle East respiratory syndrome in 2012 also demonstrated a similar assortment of problems. Some patients who have had an acute viral infection such as Lyme disease, Akselrod explains, may also develop inflammatory or painful changes that persist for a long time after the initial illness.
“The pathogen that triggered this is gone, but the inflammation or the symptoms persist,” she says. “We do not know yet if there are certain genetic or environmental factors that may predispose [a patient] to these phenomena. 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.”
However, 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’re trying to be very thoughtful about how we can develop scientific research protocols to help shed light on the mechanisms of disease and identify strategies for diagnosis and treatment,” says 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 Reparixin, a drug that has been used in trials studying the treatment and prevention of breast cancer, metastatic breast cancer, and pancreatectomy for chronic pancreatitis, for hospitalized adult patients with severe COVID-19 pneumonia.
When COVID-19 cases first began to spike nationwide in spring 2020, Chang and Adrienne Poon, MD, MPH, assistant professor of medicine at GW 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 for 10 weeks, 6 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 GW 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.
By October, more than a dozen project proposals had been submitted to the specimen bank by GW research faculty investigating topics including immune responses for antibodies and T-cells, the impact of the renin-angiotensin system, the impact on those with diabetes, and hypercoagulability.
A Glimmer of Hope
Rebecca, after several trips to the doctor, was becoming discouraged. By that point Rebecca had been coping with the fatigue, foggy brain and all the other symptoms for nearly a year, and she was describing her problem as Long COVID based on descriptions she’s read in news reports. Her frustration stemmed from what she felt was a lack of curiosity about what she was experiencing. After a visit to a neurologist in December 2020 turned up nothing, her primary care physician referred 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, says Akselrod, who has been treating Rebecca at the clinic since February 2021. 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. 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 says. “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, be 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 says, 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.”