Jan. 18, 2023 – On March 18, 2020, Megan Fitzgerald was lying on the floor of her Philadelphia home after COVID-19 hit her like a ton of bricks. She had a fever, severe digestive issues, and she couldn’t stand on her own. Yet there she was, splayed out in the bathroom, trying both to respond to work emails and entertain her 3-year-old son, who was attempting to entice her by passing his toys through the door.
She and her husband, both medical researchers, were working from home early in the pandemic with no child care for their toddler. Her husband had a grant application due, so it was all-hands-on-deck for the couple, even when she got sick.
“My husband would help me up and down stairs because I couldn’t stand,” Fitzgerald says.
So, she put a mask on and tried to take care of her son, telling him, “Mommy's sleeping on the floor again.” She regrets pushing so hard, having since discovered there may have been consequences. She often wonders: If she'd rested more during that time, would she have prevented the years of decline and disability that followed?
There’s growing evidence that overexertion and not getting enough rest in that acute phase of COVID-19 infection can make longer-term symptoms worse.
“The concept that I would be too sick to work was very alien to me,” Fitzgerald says. “It didn't occur to me that an illness and acute virus could be long-term debilitating.”
Her story is common among long COVID-19 patients, not just for those who get severely ill but also those who only have moderate symptoms. It’s why many medical experts and researchers who specialize in long COVID rehabilitation recommend what’s known as radical rest – a term popularized by journalist and long COVID advocate Fiona Lowenstein – right after infection as well as a way of coping with the debilitating fatigue and crashes of energy that many have in the weeks, months, and years after getting sick.
These sustained periods of rest and “pacing” – a strategy for moderating and balancing activity– have long been promoted by people with post-viral illnesses such as myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS), which share many symptoms with long COVID.
That’s why researchers and health care providers who have spent years trying to help patients with ME/CFS and, more recently, long COVID, recommend they rest as much as possible for at least 2 weeks after viral infection to help their immune systems. They also advise spreading out activities to avoid post-exertional malaise (PEM), a phenomenon where even minor physical or mental effort can trigger a flare-up of symptoms, including severe fatigue, headaches, and brain fog.
An international study, done with the help of the U.S. Patient-Led Research Collaborative and published in The Lancet in 2021, found that out of nearly 1,800 long COVID patients who tried pacing, more than 40% said it helped them manage symptoms.
Burden on Women and Mothers
In another survey published last year, British researchers asked 2,550 long COVID patients about their symptoms and found that not getting enough rest in the first 2 weeks of illness, along with other things like lower income, younger age, and being female, were associated with more severe long COVID symptoms.
It’s also not lost on many investigators and patients that COVID’s prolonged symptoms disproportionately affect women – many of whom don’t have disability benefits or a choice about whether they can afford to rest after getting sick.
“I don't think it's a coincidence, particularly in America, that women of reproductive age have been hit the hardest with long COVID,” says Fitzgerald. “We work outside the home, and we do a tremendous amount of unpaid labor in the home as well.”
How Does Lack of Rest Affect People With COVID?
Experts are still trying to understand the many symptoms and mechanisms behind long COVID. But until the science is settled, both rest and pacing are two of the most solid pieces of advice they can offer, says David Putrino, PhD, a neuroscientist and physical therapist who has worked with thousands of long COVID patients at Mount Sinai Hospital in New York. “These things are currently the best defense we have against uncontrolled disease progression,” he says.
There are many recommended guides for rest and pacing for those living with long COVID, but ultimately, patients need to carefully develop their own personal strategies that work for them, says Putrino. He calls for research to better understand what's going wrong with each patient and why they may respond differently to similar strategies.
There are several theories on how long COVID infection triggers fatigue. One is that inflammatory molecules called cytokines, which are higher in long COVID patients, may injure the mitochondria that fuel the body’s cells, making them less able to use oxygen.
“When a virus infects your body, it starts to hijack your mitochondria and steal energy from your own cells,” says Putrino. Attempts to exercise through that can significantly increase the energy demands on the body, which damages the mitochondria, and also creates waste products from burning that fuel, kind of like exhaust fumes, he explains. It drives oxidative stress, which can damage the body.
“The more we look objectively, the more we see physiological changes that are associated with long COVID,” he says. “There is a clear organic pathobiology that is causing the fatigue and post-exertional malaise.”
To better understand what's going on with infection associated with complex chronic illnesses such as long COVID and ME/CFS, Putrino’s lab is looking at things like mitochondrial dysfunction and blood biomarkers such as microclots.
He also points to research by pulmonologist David Systrom, MD, director of the Advanced Cardiopulmonary Exercise Testing Program at Brigham and Women's Hospital and Harvard Medical School. Systrom has done invasive exercise testing experiments that show that people with long COVID have a different physiology than people who have had COVID and recovered. His studies suggest that the problem doesn’t lie with the functioning of the heart or lungs, but with blood vessels that aren’t getting enough blood and oxygen to the heart, brain, and muscles.
Why these blood vessel problems occur is not yet known, but one study led by Systrom’s colleague, neurologist Peter Novak, MD, PhD, suggests that the small nerve fibers in people with long COVID are missing or damaged. As a result, the fibers fail to properly squeeze the big veins (in the legs and belly, for instance) that lead to the heart and brain, causing symptoms such as fatigue, PEM, and brain fog. Systrom has seen similar evidence of dysfunctional or missing nerves in people with other chronic illnesses such as ME/CFS, fibromyalgia, and postural orthostatic tachycardia syndrome (POTS).
“It's been incredibly rewarding to help patients understand what ails them and it’s not in their head and it's not simple detraining or deconditioning,” says Systrom, referring to misguided advice from some doctors who tell patients to simply exercise their way out of persistent fatigue.
These findings are also helping to shape specialized rehab for long COVID at places like Mount Sinai and Brigham and Women’s hospitals, whose programs also include things like increasing fluids and electrolytes, wearing compression clothing, and making diet changes. And while different types of exercise therapies have long been shown to do serious damage to people with ME/CFS symptoms, both Putrino and Systrom say that skilled rehabilitation can still involve small amounts of exercise when cautiously prescribed and paired with rest to avoid pushing patients to the point of crashing. In some cases, the exercise can be paired with medication.
In a small clinical trial published in November, Systrom and his research team found that patients with ME/CFS and long COVID were able to increase their exercise threshold with the help of a POTS drug, Mestinon, known generically as pyridostigmine, taken off label.
As is the case of many people with long COVID, Fitzgerald’s recovery has had ups and downs. She now has more help with child care and a research job with the disability-friendly Patient-Led Research Collaborative. While she hasn’t gotten into a long COVID rehab group, she’s been teaching herself pacing and breathwork. In fact, the only therapeutic referral she got from her doctor was for cognitive behavioral therapy, which has been helpful for the toll the condition has taken emotionally. “But it doesn't help any of the physical symptoms,” Fitzgerald says.
She’s not the only one who finds that a problem.
“We need to continue to call out people who are trying to psychologize the illness as opposed to understanding the physiology that is leading to these symptoms,” says Putrino. “We need to make sure that patients actually get care as opposed to gaslighting.”