When Michelle Puent tested positive for COVID-19 in January, she recovered quickly from her initial flu-like symptoms. After about a week, new symptoms flared and she felt like her head was on fire. She was soon so weak that she couldn’t make it out of bed and to the bathroom without fainting.
A retired family practice doctor, Puent found herself needing to stop and take deep breaths on her way back to her bed from the bathroom, so she quickly returned to reading medical journals. It wasn’t long before she had a tentative diagnosis for herself: long COVID.
After not being able to make an appointment with a designated post-COVID care clinic, she called up the physical therapist who had seen her previously for a tendon injury. Her physical therapist also had to crack open the medical journals in order to familiarize herself with how to care for this new kind of patient in need of proper rehabilitation.
The COVID-19 pandemic has triggered a mass disabling event leaving behind a new generation of patients with post-viral fatigue. While the health system was immediately overwhelmed with hospitalizations, a growing movement of survivors experiencing debilitating, long-term symptoms worked to coin the term “long COVID.” Now, physical therapists are the next group within the healthcare system that is poised to have a lasting effect on people’s quality of life.
Although nearly all long COVID patients experience bouts of fatigue, especially after physical activity, some suffer from exhaustion so severe after even the lowest level of exertion that it is called post-exertional malaise. Experts say that some level of fatigue following a viral illness is to be expected due to a loss of muscle tone during physical inactivity. However, a recent study finds that nearly half of long COVID patients experience this more serious malaise.
The symptom of post-exertional malaise is the most common symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a complex chronic disease that is usually triggered by an infection and affects an estimated 15-30 million people worldwide. While experts are still unclear about the differences between long COVID and ME/CFS, it is clear that many patients who survived acute COVID infection are developing this misunderstood malaise. Therefore, understanding the physiology of this previously under-researched condition is important for the rehabilitation of a large number of long COVID patients.
Todd Davenport, vice-chair of the physical therapy doctorate program at the University of the Pacific, has studied ME/CFS rehabilitation for more than 12 years. He says that the idea behind physical therapy for these patients is to advocate that people exercise in ways that don’t trigger the parts of their energy system damaged by disease.
He explains that our bodies run on multiple energy sources: a short-term energy system localized to the muscles and a powerful long-term system that requires oxygen. The short-term system provides short bursts of energy that the body can metabolize quickly. The long-term aerobic energy system sustains more intense activity levels and recharges the short-term energy reserves.
A person with ME/CFS has a dysfunctional aerobic energy system. Their body cannot process enough oxygen to sustain the energy needed to support higher intensity and longer-lasting activities. Their body enters oxygen debt faster after lower exercise intensities than it does for other people, including people who are simply out of shape.
A study that asked long COVID patients to pedal on a stationary bike found that their muscles were consuming more oxygen than they could take in. This oxygen debt leads to symptoms including profound physical and mental fatigue.
Physical therapy practices thus need to be incredibly individualized depending on how much activity someone can handle. Physical therapists need to understand malaise in order to help people learn how to pace themselves so that they don’t crash their unreliable energy systems, according to Davenport.
Dr. Jonathan Whiteson, a physiatrist and vice-chair of NYU Langone’s Rusk Rehabilitation, says that many physical therapists don’t know enough about the difference between fatigue and malaise. He has observed this disconnect while treating scores of long COVID patients alongside a team of specialists, including physical therapists. “A lot of people have been thrust into this without adequate training, it’s not their fault or the system’s fault, just we’ve been caught by surprise by a literal tsunami of patients,” he says.
“If somebody has post-exertional malaise, we have to be very cautious in prescribing progressive activity because that activity can exacerbate symptoms,” says Whiteson. Both he and Davenport say that the first step is to determine a baseline of how much a person can move and still feel okay the next day.
“Most people when they think of exercise, they think ‘run a mile’ or ‘hit the gym,’” says Davenport. For long COVID patients experiencing post-exertional malaise, he considers activities such as sitting up in a chair and preparing a meal to be exercise.
John Martinez, a private practice physical therapist in New York City, says he sees patients with long COVID who try to cook and then suddenly get too exhausted to finish the meal they are preparing.
“We’re having to pull back and reassess on every single visit,” he says. “I know that if [my patient] gets too involved she can knock herself out for a couple days.”
Timothy Caputo, a physical therapist at SPEAR Physical Therapy in New York City, says that he primarily sees patients experiencing dizziness, lightheadedness, fatigue and shortness of breath. The first exercises he assigns are completed while the patient is lying down. He also prescribes breathing exercises. Stretches are then added to the routine, either done by the patient or facilitated by the therapist.
He says that the work can also provide a supportive, social environment for people. Not only are physical therapists like Caputo helping patients complete their exercises every session, but they also form relationships with their clients. He adds that he is sure long COVID will be around for a while and that he sees physical therapy actively improving people’s quality of life.
One of Davenport’s current projects is focused on creating a new quality of life questionnaire that is specific to people experiencing post-exertional malaise. He says that current measurements do not capture the difficulty patients have with the unpredictability of their energy levels and the ability to keep up with daily life.
“When we talk about quality of life, it’s really hard to measure because I just don’t think we have the language yet to sort of conceptualize how bad this is,” he says.
Patients with ME/CFS have been found to score lower on quality of life surveys than patients with other conditions including multiple sclerosis, diabetes, lung disease, heart failure and cancer, according to one study. Davenport hopes that a post-exertional malaise-specific questionnaire will provide physical therapists with more information in order to empower patients to predict their own return to basic activities of daily living.
Some patients who were previously active can get very frustrated with the slow recovery process. “Some of them feel guilty,” says Martinez. “Some will say, ‘oh well, I’m not doing enough,’ and I say, ‘no, for long COVID, you’re doing just the right amount.’”
A physical therapist, therefore, has two important roles: helping a long COVID patient learn exercises that will be helpful without making them crash and empowering patients to have a better understanding of what is happening to their bodies.
Puent, meanwhile, is working to keep up with her exercises from home. Her physical therapist recommended that she break her exercises down into smaller sets with a smaller number of repetitions per set.
“She said what would really help is incorporating in some of my usual, you know, household duties, almost like it’s part of my therapy,” she says. So, if she does the dishes then she doesn’t need to do as many seated exercises that day.
“I’m lucky that I’m a stay-at-home mom with a husband who’s willing to do everything,” she adds. “If I had to work like this, then I think I would be screaming.”