Harnessing the Power of Research for Patients Challenged by Long COVID

Before contracting COVID-19, Kathy was known for her energy and drive. She rarely missed a day of work and never skipped her morning routine. As a mandatory worker in property management, she continued to go into the office during the nationwide shutdown in March 2020.

But by late March, everything changed. She felt exhausted. At first, she attributed it to an increased workload, but then it escalated into something far more serious as she developed intense, labored breathing.

In a recent interview, Kathy shared her transformative journey through hospitalization, inpatient rehabilitation, and developing Long COVID. She describes the pain and shame of Long COVID, and how the National Institutes of Health-funded RECOVER-ENERGIZE study, in which Yale is a collaborator, helped her recovery.

In partnership with Duke, Yale researcher Basmah Safdar, MD, the Norma Weinberg Spungen and Joan Lebson Bildner Professor of Women’s Health Research at Yale and professor of emergency medicine, leads the RECOVER-ENERGIZE study in New Haven. The study focuses on understanding and addressing exercise intolerance and post-exertional malaise (PEM) in Long COVID patients.

Kathy’s experience highlights both the challenges faced by individuals with Long COVID and the promise of ongoing research efforts to improve their quality of life.

In April 2020, Kathy’s health deteriorated rapidly, and she tested positive for COVID-19, leading to intubation and a prolonged hospital stay. Despite the severity of her illness, Kathy was determined to regain her strength. "After being intubated for three weeks and hospitalized for five, my lungs collapsed, and I needed intensive physical and occupational therapy just to get back on my feet," Kathy says. “I spent five more weeks in an inpatient rehab where I learned to walk again and strengthen my muscles.”

But, while some of her symptoms improved, others continued, and new symptoms appeared. She experienced prolonged fatigue and was diagnosed with “COVID toes," a peculiar condition where her toes developed a rash resembling chickenpox. "My hair started falling out, and I felt like I couldn’t function normally," she recalls.

Research has shown that patients with severe COVID requiring hospitalization or intensive care, like Kathy, are more likely to suffer from Long COVID symptoms. Yale-led research shows sex differences in inflammatory response to the virus, which may explain why women are more likely to suffer from Long COVID than men.

Kathy learned about the RECOVER-ENERGIZE study through a Long COVID meeting at Yale led by Lisa Sanders, MD, who directs Yale's Long COVID Multidisciplinary Care Center. In 2023, Kathy received a letter inviting her to participate in RECOVER-ENERGIZE. The study focused on facilitating PEM recovery through a pacing intervention in a randomized study design.

"I was assigned to the pacing arm," Kathy explains. "I got a Fitbit to monitor my heart rate and a workbook to record my progress. It was all about learning to pace myself and recognizing when my body needed rest."

The rigorous monitoring regimen and personalized coaching motivated Kathy to become more attuned to her body's signals, significantly reducing the frequency and severity of her PEM episodes. "Logging my daily activity and learning to take breaks when my heart rate spiked was crucial. I gained knowledge to manage my symptoms and developed a more positive outlook for my Long COVID recovery.” Kathy especially raved about study coordinator Anirudh Goyal, MPH, in the role he and the Yale study team played in her path to recovery.

Kathy hopes that by sharing her story, she can increase awareness about Long COVID and encourage more people to participate in studies like RECOVER-ENERGIZE. "I want people to understand that Long COVID is real. There are good days and bad days, and just because someone looks fine on the outside doesn’t mean they feel well inside," she emphasizes.

Her message to health care providers is clear: Listening to patients and not dismissing their symptoms as anxiety or other conditions is vital. "The Yale study was great because they genuinely wanted to understand what patients are going through," Kathy says. "I feel fortunate to be part of it and hope the findings will help more people feel better."

As for the future, Kathy continues to take each day as it comes, with hope that ongoing research will lead to better treatments and improved quality of life for Long COVID sufferers. "I’m learning to balance activities and prepare for them in advance,” she adds. "The support from the Yale team has made a huge difference in my life."

Kathy’s experience highlights both the challenges faced by individuals with Long COVID and the promise of ongoing research efforts to improve their quality of life.

Safdar is dedicated to continuing RECOVER-ENERGIZE, where dozens of local residents have been enrolled to date to enhance recovery. As a clinical trialist, she believes in the transformative power of research in partnership with clinicians and patients to find solutions that can change lives. “Trials, including RECOVER-ENERGIZE, empower patients by offering them a choice, and importantly, hope, when all else seems uncertain.” The Yale team is grateful to participants, including Kathy, who are making choices to pave the way not only for their own healing but also to contribute to a broader quest for meaningful discovery for others.

For more information about ongoing Long COVID clinical trials and how you can participate, email safdar.lab@yale.edu.