August 3, 2022: When Joel Fram woke up on the morning of March 12, 2020, he had a pretty good idea why he felt so bad.
He lives in New York, where the first wave of the coronavirus hit the city. “I knew instantly,” says the 55-year-old Broadway musical director. It was COVID-19.
What started with a general feeling of being hit by a truck soon included a sore throat and fatigue so severe that he once fell asleep in the middle of texting his sister. Final symptoms were chest tightness and shortness of breath.
And then he began to feel better. “By mid-April, my body felt essentially back to normal,” she says.
So he did what would have been smart after almost any other illness: he started exercising. That didn’t last long. “It felt like someone had pulled the rug out from under me,” she recalls. “I couldn’t walk three blocks without feeling breathless and fatigued.”
That was the first indication that Fram had COVID for a long time.
According to the National Center for Health Statistics, at least 7.5% of American adults – about 20 million people – have symptoms of prolonged COVID. And for almost all of those people, a growing body of evidence shows that exercise will make their symptoms worse.
COVID-19 patients who had the most severe disease will have more problems with exercise later in life, according to a review published in June by researchers at the University of California, San Francisco. But even people with mild symptoms may have a hard time regaining their previous levels of fitness.
“We have participants in our study who had relatively mild acute symptoms and then had really profound declines in their ability to exercise,” says Matt Durstenfeld, MD, a cardiologist at the UCSF School of Medicine and lead author of the review.
Most people with prolonged COVID will have lower-than-expected scores on aerobic fitness tests, as Yale researchers show in a study published in August 2021.
“Some of that is due to deconditioning,” says Durstenfeld. “You’re not feeling well, so you’re not doing the same exercise you were before you got infected.”
In a study published in April, people with prolonged COVID told researchers at Britain’s University of Leeds that they spent 93% less time in physical activity than before infection.
But multiple studies have found that deconditioning is not entirely, or even mostly, the culprit.
A 2021 study found that 89% of participants with prolonged COVID had post-exertional malaise (PEM), which occurs when a patient’s symptoms worsen after engaging in even minor physical or mental activity. According to the CDC, post-exertional discomfort can appear 12 to 48 hours after activity, and it can take up to 2 weeks for people to fully recover.
Unfortunately, the advice patients receive from their doctors sometimes makes the problem worse.
How long COVID defies simple solutions
Long-term COVID is a “dynamic disability” that requires healthcare professionals to go off script when a patient’s symptoms don’t respond predictably to treatment, says David Putrino, PhD, a neuroscientist, physical therapist, and director of rehabilitation innovation. of the Mount Sinai Health System in New York City.
“We’re not that good at dealing with someone who, for all intents and purposes, can appear healthy and not disabled one day and be completely debilitated the next,” he says.
Putrino says more than half of his clinic’s long-term COVID patients told his team they had at least one of these ongoing issues:
- Fatigue (82%)
- Brain fog (67%)
- Headache (60%)
- Sleep problems (59%)
- Dizziness (54%)
And 86% said exercise made their symptoms worse.
The symptoms are similar to what doctors see with conditions like lupus, Lyme disease and chronic fatigue syndrome, something many experts compare prolonged COVID to. Researchers and medical professionals still don’t know exactly how COVID-19 causes these symptoms. But there are some theories.
Possible causes of prolonged COVID symptoms
Putrino says it’s possible for the virus to enter a patient’s cells and hijack mitochondria, a part of the cell that provides energy. It can stay there for weeks or months, something known as viral persistence.
“Suddenly the body gets less energy for itself, even though it produces the same amount or even a little more,” he says. And there is a consequence of this additional stress on the cells. “Creating energy is not free. You are producing more waste products, which puts your body in a state of oxidative stress,” says Putrino. Oxidative stress damages cells as molecules interact with oxygen in damaging ways.
“The other big mechanism is autonomic dysfunction,” says Putrino. It’s marked by breathing problems, heart palpitations, and other glitches in areas most healthy people never have to think about. About 70% of long-COVID patients at the Mount Sinai clinic have some degree of autonomic dysfunction, she says.
For a person with autonomic dysfunction, something as basic as changing posture can trigger a storm of cytokines, a chemical messenger that tells the immune system where and how to respond to challenges like injury or infection.
“All of a sudden you have this on/off switch,” says Putrino. “You go right into ‘fight or flight,’” with a rush of adrenaline and a racing heart, “then back to ‘rest or digest.’ You go from being excited to being so sleepy you can’t keep your eyes open.”
A patient with viral persistence and another with autonomic dysfunction may have the same negative reaction to exercise, even though the triggers are completely different.
So how can doctors help patients with prolonged COVID?
The first step, Putrino says, is understanding the difference between a long COVID and a long recovery from COVID-19 infection.
Many of the patients in the latter group still have symptoms 4 weeks after their first infection. “At 4 weeks, yes, they still feel symptoms, but that’s not COVID for long,” she says. “That just takes a while to get over a viral infection.”
The fitness advice is simple for such people: take it easy at first and gradually increase the amount and intensity of aerobic exercise and strength training.
But that advice would be disastrous for someone who meets Putrino’s strictest definition of prolonged COVID: “Three to four months after initial infection, they experience severe fatigue, exertional symptoms, cognitive symptoms, heart palpitations, shortness of breath,” He says. .
“Our clinic is extraordinarily cautious about exercise” for those patients, he says.
In Putrino’s experience, about 20% to 30% of patients will make significant progress after 12 weeks. “They feel more or less like they did before COVID,” she says.
The unluckiest 10% or 20% will not progress at all. Any type of therapy, even if it is as simple as moving your legs from a flat position, makes symptoms worse.
The majority, 50% to 60%, will experience some improvement in their symptoms. But then progress will stop, for reasons researchers are still trying to figure out.
“I think gradually increasing exercise is still good advice for the vast majority of people,” says UCSF’s Durstenfeld.
Ideally, that exercise will be supervised by someone trained in cardiac, pulmonary, and/or autonomic rehabilitation, a specialized type of therapy aimed at resynchronizing the autonomic nervous system that governs breathing and other unconscious functions, he says. But those therapies are rarely covered by insurance, meaning most long-term COVID patients are on their own.
Durstenfeld says it’s important for patients to keep trying and not give up. “With slow and steady progress, many people can improve profoundly,” he says.
Fram, who has worked under careful supervision, says she is getting closer to something like her pre-COVID-19 life.
But he is not there yet. Long COVID, he says, “affects my life every day.”