According to the Center for Disease Control and Prevention, Long COVID is a chronic condition associated with a prior COVID-19 infection, typically persisting for at least three months. It affects every major organ system, leaving patients with persistent exhaustion, cognitive dysfunction, shortness of breath, and autonomic instability. Today, more than 400 million people worldwide are believed to be suffering from its effects.
For Jennifer and Lauren Barchi, living with Long COVID has been an especially challenging journey.
In late December 2019, the couple was celebrating their son's first birthday when Jennifer began to feel unwell. Believing it was just a cold, she pushed through-juggling life as a mother, wife, and pastor at her church. But soon, she began experiencing unusual symptoms: difficulty climbing stairs, frequent sinus infections, and noticeable cognitive changes. Tasks that once came easily-problem-solving, word-finding, and processing information-became increasingly difficult.
"I couldn't find words. I couldn't follow conversations. I couldn't trust my own brain," Jennifer recalls.
At first, Jennifer chalked it up to stress from wearing too many hats. But even after stepping away from her ministry responsibilities, her symptoms persisted. In 2021, she began seeking medical help. Most providers told her the same thing: she needed to manage her stress, change her lifestyle, and be more active. As a trapeze artist, Jennifer knew that diagnosis didn't make sense. Despite using a continuous positive airway pressure (CPAP) machine for newly developed sleep apnea, her condition didn't improve. Eventually, she turned to Johns Hopkins for answers.
After seeing several specialists over the course of a year, Jennifer was referred to Alba Azola, M.D., Co-Director of the Long COVID/Chronic Fatigue Syndrome Clinic at Johns Hopkins Medicine in 2023. She had her first appointment in 2024-and it was a turning point. "That was the first time I left a doctor's office with a real sense of hope and understanding," Jennifer says.
With Dr. Azola's help, Jennifer was finally diagnosed with Long COVID, autonomic dysfunction, and post-exertional malaise, the core symptom of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Lauren, her wife, describes the impact plainly: "Our life now looks like that of a couple in their 80s. We used to hike, perform, explore. Now I care for Jennifer and our child most days-because Long COVID has taken so much from her."
On days when post-exertional malaise hits, Jennifer is often bed-bound. Lauren steps in to care for both her and their young child. "Our activity level has dropped to what feels like we're in our 80s," Lauren says.
"Long COVID is a mass disabling event. Sadly, Jennifer is one of millions of Americans affected," Lauren adds. "Historically, infection-associated chronic conditions have been underfunded and misunderstood, often leading to the dismissal of patients. But the COVID pandemic has pushed this issue into the spotlight, leading to a long-overdue influx of federal funding aimed at advancing research in this area."
Jennifer recently participated in an NIH-funded study at Johns Hopkins that focuses on how Long COVID affects the brain, incorporating MRI imaging, immune profiling, and cognitive testing.
As public health systems strain and families like Jennifer's wait for solutions, scientists at Johns Hopkins are working urgently to decode Long COVID's mysteries-from the immune system to the nervous system to the mitochondria that power our bodies. The work is difficult. But it is essential.
"I want my wife to have her life back," Lauren says, "And we believe that research is the only path that for that to happen."
Research saves lives and behind every patient is a family, a future, and a life worth restoring.
