The doctors with long COVID who have been left behind

The first four months after being diagnosed with long COVID, Dr. David Heeger couldn’t walk a lap around the block without his wife holding him up. He couldn’t even sit upright, for that matter, for more than an hour. A year before, he’d been helicopter skiing in Alaska.

“Not that I've ever been poisoned, but I imagine that's what it feels like,” Heeger told Salon in a phone interview. “You can't do anything, everything hurts and it is a helpless feeling.”

Heeger, a neuroscientist and tenured professor at New York University, feels fortunate that he is able to afford the medical care he needs with an income not affected by his disability. Through getting involved in advocacy groups pushing for more research into the causes of and treatments for long COVID for a population that largely feels they have been left behind, he has seen how devastating long COVID can be, leaving people unemployed and unable to afford medical care, sometimes isolated in their homes without anyone there to care for them.

“It’s horrific,” he said. “It is hard to get through a meeting without tearing up.”

Still, for Heeger — along with 18 million Americans — long COVID has turned his life upside down. He shut down his research lab and lives a quieter life, mostly isolated and seeing friends occasionally outside so as to not risk reinfection. 

Long COVID is a condition thought to be caused by the SARS-CoV-2 virus remaining in the body, causing symptoms of COVID that last for anywhere from a few months to years. It is characterized by severe fatigue, brain fog and other neurological issues, palpitations and a range of other symptoms. The U.S. Department of Health and Human Services classifies the condition as a disability because of the physical and mental impairment it causes.

In an analysis of worker's compensation claims in New York published in January, 71% of people with long COVID couldn’t work for at least six months since the pandemic began. Other research conducted out of the Brookings Institution indicates 15% of the nation’s 10.6 million unfilled jobs could be attributable to long COVID, altogether costing the country at least $170 billion in lost wages.

These losses are likely even higher among frontline workers who were more frequently exposed to COVID-19 in the early stages of the pandemic, working long hours with limited personal protective equipment to keep patients from succumbing to the mysterious new virus. Colliding with issues like burnout, unmanageable workloads and mental health conditions stemming from the pandemic that are making clinicians leave the workforce in record numbers, long COVID threatens to undermine the very health system designed to treat people with the condition.

In a July report from the British Medical Association, one in five doctors were unable to work or had to significantly reduce their hours due to long COVID, and nearly half said they had reduced or eliminated their income and were relying on savings to make ends meet. More than half also said their long COVID developed after an initial infection during the first wave of the pandemic in 2020, when they lacked personal protective equipment.

“Healthcare workers who fell ill caring for COVID positive patients unprotected at work, face [the] threat of being abandoned in their hour of need,” wrote Dr. Kelly Fearnley, the chair and co-founder of Long COVID Doctors for Action on X (formerly Twitter). “Those who are not absent with long COVID are burnt out and leaving in droves.”

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Assuming a similar portion of U.S. healthcare workers are impacted by long COVID, as many as 200,000 doctors could be at least partially out of work due to long COVID. In a 2021 study published in Mayo Clinic Proceedings, one in five healthcare providers said they planned to leave the profession within two years. Although COVID-19-related anxiety and depression were factors contributing to these intentions, the study found that burnout and feeling undervalued were actually the main reasons for the changing workforce. That is, healthcare workers were already making plans to leave the healthcare system pre-pandemic — and the effects of long COVID are likely leaving even more out of work.

Meanwhile, the American Hospital Association last year expected half a million nurses to leave the workforce, although Nurses United has said there isn’t a nursing shortage as the association suggests — just a shortage of nurses who are willing to withstand the current workplace conditions. Healthcare worker strikes have also been playing out at Kaiser Permanente and Prime Healthcare, among others.

Yet demand for healthcare is only increasing as made plain by the COVID-19 pandemic. Along with an aging population with increasing rates of chronic conditions like diabetes, obesity and heart disease, Americans have lower rates of practicing physicians and fewer hospital beds than most other countries, according to a 2022 report from the Commonwealth Fund. Some say it’s a matter of when, not if, the next pandemic strikes, while this year saw a record-breaking number of climate disasters and soaring heatwaves that each put additional strains on the healthcare system. And 2023 was probably the coolest summer this generation will ever see.

Dr. David Putrino, a long COVID researcher and professor of rehabilitation medicine at the Icahn School of Medicine at Mount Sinai, said he has many colleagues who are healthcare workers who got sick with COVID in the early stages of the pandemic and have been coping with various levels of debilitation since then.

“We were already in trouble in terms of burnout and the number of people leaving the profession,” Putrino told Salon in a phone interview. “We certainly experienced another big bump with long COVID affecting healthcare workers.”

Researchers are still finding out more about the nature of long COVID and who is most at risk. Recent studies suggest it could be caused by dormant viruses in the body reactivated through COVID-19 or that reservoirs of SARS-CoV-2 linger in the body. Earlier this month, a new study suggested long COVID could also be caused by serotonin depletion caused by the virus. The Centers for Disease Control and Prevention (CDC) says it can present in 7% of the population or one in five people who are infected with SARS-CoV-2.

Heeger and other long COVID advocacy groups have called upon Congress to increase funding for long COVID research. As he wrote in a blog tracking his experience with long COVID, a trial he participated in conducted by Putrino was not funded by the National Institutes of Health (NIH) and instead had to be supported through philanthropy. As someone who has done 30 years of research, Heeger knows that better research outcomes tend to follow the money. 

“If there were to be 10 [times] more funding for long COVID research, biomedical scientists with a broad range of experience and expertise would flock to it,” he wrote. “Some of them would have ideas that would lead to key insights, enabling us to predict which individuals would have bad reactions to the vaccine, and critically how to better treat the underlying causes (rather than just the symptoms) of long COVID.”

Without effective treatments, long COVID joins a long list of stressors already straining the healthcare system. Healthcare workers with long COVID, some of whom have also treated patients with the condition, know all too well how destructive it can be.

“It's a devastating healthcare and humanitarian crisis,” Heeger said. “It's [also] an economic crisis.”