August 3, 2022 – When Joel Fram woke up on the morning of March 12, 2020, he had a pretty good idea why he was feeling so lousy.

He lives in New York, where the first wave of the coronavirus swept through the city. “I knew right away,” says the 55-year-old Broadway musical director. It was COVID-19.

What started with a general feeling of having been hit by a truck was quickly accompanied by a sore throat and fatigue so intense that he once fell asleep while texting to his sister. The final symptoms were chest tightness and difficulty breathing.

And then he started to feel better. “By mid-April, my body basically felt back to normal,” he says.

So he did what would have been smart after almost any other illness: he started training. It didn’t last long. “I felt like someone was ripping the rug off me,” he recalls. “I couldn’t walk three blocks without being out of breath and tired.”

It was the first indication that Fram had long COVID.

According National Center for Health Statistics, at least 7.5% of American adults – nearly 20 million people – have long COVID symptoms. And for almost all of these people, a growing body of evidence shows that exercise will make their symptoms worse.

COVID-19 patients who had the most severe illness will have the hardest time exercising later, says a exam published in June by researchers at the University of California, San Francisco. But even people with mild symptoms may struggle to return to their previous level of fitness.

“We have participants in our study who had relatively mild acute symptoms and then experienced a very profound decrease in their ability to exercise,” says Matt Durstenfeld, MD, cardiologist at UCSF School of Medicine and lead author of the journal.

Most people with long-lasting COVID will have lower-than-expected scores on aerobic fitness tests, as Yale researchers showed in a study published in August 2021.

“Part of that is due to deconditioning,” says Durstenfeld. “You’re not feeling well, so you’re not training to the same degree that you might have been before you got infected.”

In a study published in April, people with long-term COVID told researchers at Britain’s University of Leeds that they spent 93% less time doing physical activity than before they were infected.

But several studies have shown that deconditioning isn’t entirely — or even primarily — to blame.

A 2021 study found that 89% of participants with long-lasting COVID had post-exercise sickness (PEM), which occurs when a patient’s symptoms worsen after engaging in even minor physical or mental activities. According to the CDC, post-exercise malaise can occur up to 12 to 48 hours after activity, and it can take up to 2 weeks to fully recover.

Unfortunately, the advice patients receive from their doctors sometimes makes the problem worse.

How long COVID defies simple solutions

The long COVID is a “dynamic disability” that forces medical professionals to step out of the script when a patient’s symptoms do not respond to treatment in a predictable way, says David Putrino, PhD, neuroscientist, physical therapist and director of the innovation in rehabilitation for the Mount Sinai Health System in New York.

“We’re not that good at dealing with someone who, for all intents and purposes, can look healthy and not disabled one day and be completely debilitated the next,” he says.

Putrino says more than half of the long COVID patients of his clinic told his team that 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 made their symptoms worse.

Symptoms are similar to what doctors see with diseases such as lupus, Lyme disease and chronic fatigue syndrome – something many specialists compare long COVID to. Researchers and medical professionals still don’t know exactly how COVID-19 causes these symptoms. But there are a few theories.

Potential Causes of Long COVID Symptoms

Putrino says it’s possible the virus could enter a patient’s cells and hijack the mitochondria – a part of the cell that provides energy. It can linger there for weeks or months – this is called viral persistence.

“All of a sudden, the body is getting less energy for itself, even though it’s producing the same amount, or even a bit more,” he says. And there is a consequence to this additional stress on the cells. “Creating energy is not free. You produce more waste, which puts your body in a state of oxidative stress,” says Putrino. Oxidative stress damages cells because the molecules interact with oxygen in harmful ways.

“The other big mechanism is autonomic dysfunction,” says Putrino. It is marked by breathing problems, heart palpitations and other problems in areas that most healthy people never have to think about. About 70% of patients with long-term COVID at the Mount Sinai Clinic have some degree of autonomic dysfunction, he says.

For someone 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.

“Suddenly you have this on-off switch,” Putrino says. “You go straight to ‘fight or flight,’ with a rush of adrenaline and a peak heart rate, “and then dive back in to ‘rest or digest.’ You go from fiery to so drowsy you can’t keep the 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 long-time COVID patients?

The first step, says Putrino, is to understand the difference between a long COVID and a long recovery after a COVID-19 infection.

Many patients in the latter group still have symptoms 4 weeks after their first infection. “At 4 weeks, yes, they’re still having symptoms, but that’s not long COVID,” he says. “It just takes time to overcome a viral infection.”

The fitness tips for these people are simple: go easy at first, then 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 after initial infection, they experience severe fatigue, exertional symptoms, cognitive symptoms, heart palpitations, shortness of breath,” he said. .

“Our clinic is extremely cautious with exercise” for these patients, he says.

In Putrino’s experience, approximately 20-30% of patients will make significant progress after 12 weeks. “They feel more or less like they felt before COVID,” he says.

The unluckiest 10-20% will not progress at all. Any kind of therapy, even if it’s as simple as moving their legs from a flat position, makes their symptoms worse.

The majority – 50% to 60% – will have improvements in their symptoms. But then progress will stop, for reasons researchers are still trying to figure out.

“My feeling is that gradually increasing your exercise is still good advice for the vast majority of people,” says UCSF’s Durstenfeld.

Ideally, this 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 these therapies are rarely covered by insurance, meaning most longtime COVID patients are on their own.

Durstenfeld says it’s important that patients keep trying and don’t give up. “With slow, steady progress, many people can improve profoundly,” he says.

Fram, who worked under 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 day.”