Aug. 3, 2022 – When Joel Fram woke up on the morning of March 12, 2020, he had a pretty good idea why he felt so lousy.
He lives in New York, where the first wave of the coronavirus was tearing through the city. “I instantly knew,” says the 55-year-old Broadway music director. It was COVID-19.
What started with a general sense of having been hit by a truck soon included a sore throat and such severe fatigue that he once fell asleep in the middle of sending a text to his sister. The final symptoms were chest tightness and trouble breathing.
And then he started to feel better. “By mid-April, my body was feeling essentially back to normal,” he says.
So he did what would have been smart after almost any other illness: He began working out. That didn’t last long. “It felt like someone pulled the carpet out from under me,” he remembers. “I couldn’t walk three blocks without getting breathless and fatigued.”
That was the first indication Fram had long COVID.
According to the National Center for Health Statistics, at least 7.5% of American adults – close to 20 million people – have symptoms of long 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 illness will struggle the most with exercise later, according to a review published in June from researchers at the University of California, San Francisco. But even people with mild symptoms can struggle to regain their previous levels of fitness.
“We have participants in our study who had relatively mild acute symptoms and went on to have really profound decreases in their ability to exercise,” says Matt Durstenfeld, MD, a cardiologist at UCSF School of Medicine and principal author of the review.
Most people with long COVID will have lower-than-expected scores on tests of aerobic fitness, as shown by Yale researchers in a study published in August 2021.
“Some amount of that is due to deconditioning,” Durstenfeld says. “You’re not feeling well, so you’re not exercising to the same degree you might have been before you got infected.”
In a study published in April, people with long COVID told researchers at Britain’s University of Leeds they spent 93% less time in physical activity than they did before their infection.
But multiple studies have found deconditioning is not entirely – or even mostly – to blame.
A 2021 study found that 89% of participants with long COVID had post-exertional malaise (PEM), which happens when a patient’s symptoms get worse after they do even minor physical or mental activities. According to the CDC, post-exertional malaise can hit as long as 12 to 48 hours after the activity, and it can take people up to 2 weeks to fully recover.
Unfortunately, the advice patients get from their doctors sometimes makes the problem worse.
How Long COVID Defies Simple Solutions
Long COVID is a “dynamic disability” that requires health professionals to go off script when a patient’s symptoms don’t respond in a predictable way to treatment, says David Putrino, PhD, a neuroscientist, physical therapist, and director of rehabilitation innovation for the Mount Sinai Health System in New York City.
“We’re not so good at dealing with somebody who, for all intents and purposes, can appear healthy and non-disabled on one day and be completely debilitated the next day,” he says.
Putrino says more than half of his clinic’s long COVID patients told his team they had at least one of these persistent problems:
- Fatigue (82%)
- Brain fog (67%)
- Headache (60%)
- Sleep problems (59%)
- Dizziness (54%)
And 86% said exercise worsened their symptoms.
The symptoms are similar to what doctors see with illnesses such as lupus, Lyme disease, and chronic fatigue syndrome – something many experts compare long COVID to. Researchers and medical professionals still don’t know exactly how COVID-19 causes those symptoms. But there are some theories.
Potential Causes Of Long COVID Symptoms
Putrino says it is possible the virus enters a patient’s cells and hijacks the mitochondria – a part of the cell that provides energy. It can linger there for weeks or months – something known as viral persistence.
“All of a sudden, the body’s getting less energy for itself, even though it’s producing the same amount, or even a little more,” he says. And there is a consequence to this extra stress on the cells. “Creating energy isn’t free. You’re producing more waste products, which puts your body in a state of oxidative stress,” Putrino says. Oxidative stress damages cells as molecules interact with oxygen in harmful ways.
“The other big mechanism is autonomic dysfunction,” Putrino says. 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 Mount Sinai’s clinic have some degree of autonomic dysfunction, he 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 an injury or infection.
“Suddenly, you have this on-off switch,” Putrino says. “You go straight to ‘fight or flight,’” with a surge of adrenaline and a spiking heart rate, “then plunge back to ‘rest or digest.’ You go from fired up to so sleepy, you can’t keep your eyes open.”
A patient with viral persistence and one with autonomic dysfunction may have the same negative reaction to exercise, even though the triggers are completely different.
So How Can Doctors Help Long COVID Patients?
The first step, Putrino says, is to understand the difference between 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, yeah, they’re still feeling symptoms, but that’s not long COVID,” he says. “That’s just taking a while to get over a viral infection.”
Fitness advice is simple for those 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 stricter definition of long COVID: “Three to 4 months out from initial infection, they’re experiencing severe fatigue, exertional symptoms, cognitive symptoms, heart palpitations, shortness of breath,” he says.
“Our clinic is extraordinarily cautious with exercise” for those patients, he says.
In Putrino’s experience, about 20% to 30% of patients will make significant progress after 12 weeks. “They’re feeling more or less like they felt pre-COVID,” he says.
The unluckiest 10% to 20% won’t make any progress at all. Any type of therapy, even if it’s as simple as moving their legs from a flat position, worsens their symptoms.
The majority – 50% to 60% – will have some improvements in their symptoms. But then progress will stop, for reasons researchers are still trying to figure out.
“My sense is that gradually increasing your exercise is still good advice for the vast majority of people,” UCSF’s Durstenfeld says.
Ideally, that exercise will be supervised by someone trained in cardiac, pulmonary, and/or autonomic rehabilitation – a specialized type of therapy aimed at re-syncing the autonomic nervous system that governs breathing and other unconscious functions, he says. But those therapies are rarely covered by insurance, which means most long COVID patients are on their own.
Durstenfeld says it’s important that patients keep trying and not give up. “With slow and steady progress, a lot of people can get profoundly better,” he says.
Fram, who’s worked with careful supervision, says he’s getting closer to something like his pre-COVID-19 life.
But he’s not there yet. Long COVID, he says, “affects my life every single day.”