January 18, 2023 – On March 18, 2020, Megan Fitzgerald lay on the ground of her Philadelphia home after being hit like a ton of bricks with COVID-19. She had a fever, severe digestive problems and was unable to face on her own. And yet there she lay, sprawled in the toilet, attempting to each reply to work emails and entertain her three-year-old son, who tried to lure her by passing her his toys through the door.
She and her husband, each medical researchers, were working from home in the beginning of the pandemic and had no child take care of their toddler. Her husband needed to submit a grant application, so the couple had their hands full, including when she got sick.
“My husband helped me climb the stairs because I couldn’t stand,” says Fitzgerald.
So she placed on a mask and tried to deal with her son, telling him, “Mommy is sleeping on the floor again.” She regrets applying a lot pressure because she has since learned that it could have consequences. She often asks herself: If she had gotten more rest during that point, could she have prevented the years of decline and disability that followed?
There is increasing evidence that overexertion and lack of rest in the course of the acute phase of COVID-19 infection can worsen longer-term symptoms.
“The idea that I might be too sick to work was completely foreign to me,” says Fitzgerald. “It didn't occur to me that an illness and an acute virus could be debilitating in the long term.”
Her story is common amongst patients with long COVID-19, not only those that grow to be severely sick but additionally those that have only moderate symptoms. For this reason, many health workers and researchers specializing in long COVID rehabilitation recommend what's often called radical rest – a term popularized by journalists and long COVID patients. Attorney Fiona Lowenstein – immediately after infection and in addition as a method of coping with the debilitating fatigue and energy slumps that many individuals experience within the weeks, months and years following the illness.
These prolonged rest periods and “steps” – a Strategy for moderation and balance of activity– have long been advocated by individuals with post-viral illnesses similar to myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), which share many symptoms with Long COVID.
That's why researchers and healthcare providers who've been trying for years to assist patients with ME/CFS and, more recently, Long COVID recommend that they rest as much as possible for at the very least two weeks after a viral infection to spice up their immune system. They also advise spreading out activities to avoid post-exertional malaise (PEM), a phenomenon by which even minor physical or mental exertion can trigger a flare-up of symptoms, including severe fatigue, headaches and difficulty concentrating.
A International studyconducted with the assistance of the US Patient-Led Research Collaborative and published in The Lancet in 2021 found that of nearly 1,800 long-COVID patients who tried pacing, greater than 40% said it helped them manage their symptoms.
Burden for girls and moms
In one other Survey published last yearBritish researchers surveyed 2,550 Long-COVID patients about their symptoms and located that insufficient rest in the primary two weeks of illness, in addition to other aspects similar to lower income, younger age and feminine gender, were related to more severe Long-COVID symptoms.
Many researchers and patients are also aware that the prolonged symptoms of COVID disproportionately Impact on women – lots of them are usually not entitled to a disability pension and haven't any alternative as as to whether they will afford day off after an illness.
“I don't think it's a coincidence that, particularly in America, women of childbearing age are the ones hardest hit by Long Covid,” says Fitzgerald. “We work outside the home and do an enormous amount of unpaid work at home as well.”
How does lack of sleep affect individuals with COVID?
Experts are still trying to grasp the various symptoms and mechanisms behind long COVID. But until the science agrees, rest and pacing are two of essentially the most solid pieces of recommendation they will offer, says Dr. David Putrino, a neuroscientist and physical therapist who has worked with 1000's 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 advisable guidelines on rest and pacing for individuals with long COVID, but ultimately patients have to fastidiously develop their very own personal strategies that work for them, Putrino says. He calls for research to higher understand what goes mistaken for every patient and why they might respond otherwise to similar strategies.
There are several theories about How long a COVID infection causes fatigueOne of them is that pro-inflammatory molecules called cytokines, whose levels are increased in long-COVID patients, can damage the mitochondria that offer the body's cells with energy, making them less capable of use oxygen.
“When a virus infects your body, it starts hijacking your mitochondria and stealing energy from your own cells,” says Putrino. Attempts to exercise while doing this could significantly increase the body's energy needs, which damages the mitochondria and in addition creates waste products from the combustion of that fuel, just like exhaust fumes, he explains. It results in oxidative stress, which might damage the body.
“The more objectively we look, the more physiological changes we see that are associated with Long COVID,” he says. “There is a clear organic pathobiology that causes the fatigue and malaise after exercise.”
To higher understand what happens in infections related to complex chronic diseases similar to Long COVID and ME/CFS, Putrino’s lab is studying things like mitochondrial dysfunction And Blood biomarkers like for instance 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 conducted invasive exercise testing experiments that show that individuals with long COVID have a unique physiology than individuals who have had COVID and recovered. His studies suggest that the issue is just not with the function of the center or lungs, but with blood vessels not carrying enough blood and oxygen to the center, brain and muscles.
Why these blood vessel problems is just not yet known, but a study Led by Systrom's colleague, neurologist Peter Novak, MD, PhD, the study suggests that the small nerve fibers are missing or damaged in individuals with long COVID. As a result, the fibers can't properly compress the big veins (within the legs and abdomen, for instance) that result in the center and brain, causing symptoms like fatigue, PEM, and brain fog. Systrom has seen similar evidence of dysfunctional or missing nerves in individuals with other chronic illnesses, similar to ME/CFS, fibromyalgia, and postural orthostatic tachycardia syndrome (POTS).
“It's been incredibly rewarding to help patients understand what's wrong with them and that it's not just in their heads and can't be explained simply by training or de-conditioning,” says Systrom, referring to the misguided advice of some doctors who tell their patients to easily exercise to do away with constant fatigue.
These findings are also helping to develop special rehabilitation programs for long-COVID patients at places like Mount Sinai and Brigham and Women's Hospitals, whose programs also include things like increasing fluid and electrolyte intake, wearing compression garments, and dietary changes. And while various kinds of exercise therapies have long been shown While exercise is unlikely to cause serious harm to individuals with ME/CFS symptoms, each Putrino and Systrom say that expert rehabilitation can still include small amounts of exercise whether it is fastidiously prescribed and combined with rest in order to not drive patients to the purpose of collapse. In some cases, exercise will be combined with medication.
In a small clinical study In a study published in November, Systrom and his research team found that patients with ME/CFS and Long COVID were capable of increase their exercise threshold with the assistance of a POTS drug, Mestinon (generically often called pyridostigmine), which was taken off-label.
Like many individuals with long COVID, Fitzgerald's recovery has had its ups and downs. She now gets more help with child care and a research job with the disability-friendly Patient-Led Research Collaborative. Although she hasn't been accepted into an extended COVID rehab group, she has taught herself pacing and respiration exercises. In fact, the one therapeutic referral she got from her doctor was cognitive behavioral therapy, which has helped with the emotional toll of the illness. “But it doesn't help with the physical symptoms,” Fitzgerald says.
She is just not the just one who finds this problematic.
“We need to continue to challenge people who try to psychologize the disease instead of understanding the physiology that leads to these symptoms,” says Putrino. “We need to make sure that patients are actually being cared for and not manipulated.”