By C.N. Williams, January 2022
When Daria Oller recovered from COVID-19, she did exactly what any athlete might do after getting sick: She started working out again.
And when working out made her feel worse, Oller did what any goal-oriented physical therapist would do: She pushed herself harder.
“I was in denial, and not realizing the poor response I was having to exercise,” Oller said. “I would have picked up on this with a patient, but I didn’t realize it with me.”
Before getting COVID-19 in March of 2020, Oller was a distance runner. But after the infection, she found herself badly winded by walking a few miles. It was unfathomable to her that something as simple as a walk could be so taxing. A small outing made her feel like she needed to recover all over again.
“It was just a mess of shortness of breath, chest pain – lung pain, like really deep that I’d never felt prior to that,” Oller said. “And I was starting to get some of the fatigue, but I didn’t recognize it.”
Oller, 37, lives in New Jersey and commutes to New York City for her work as a physical therapist.
When she got sick, the pandemic situation was dire in New York: Doctors’ offices were closed for in-person visits, hospitals were overflowing with patients, PPE was scarce, and a shortage of tests gripped the nation.
By the end of March 2020, the city was the epicenter for the pandemic in the United States.
Taking the physical out of therapy
Oller had not been hospitalized while she was sick with COVID-19. She hadn’t even seen a doctor for her symptoms. But as her recovery stagnated, she discovered online that she was not alone. Oller was part of the growing population of post-COVID patients who came to call themselves Long Haulers.
“Looking back,” Oller said, “I think July through December 2020 was one giant crash.”
By “crash,” Oller referred to what Long Haulers call bouts of fatigue – a clinical term, Oller indicated, that fails to capture the full experience of the crash itself. This fatigue critically impacts daily life at best, and debilitates all function at worst.
Oller described one day, deep in a crash, where the most she could manage was moving herself from her bed to the couch. Her husband had asked if perhaps eating would help her symptoms. She replied that she had been wanting to eat for hours, but she couldn’t get up.
Some crash days, Oller said, she couldn't even speak. Talking was too much for her body to manage.
A rose by any other name: An old condition with a new trigger?
According to Todd Davenport, 46, a particular chronic illness community warned early in the pandemic that clinicians should watch out for patients presenting with lasting fatigue symptoms. This was the ME/CFS, or ME, community – a mouthful of an acronym which stands for myalgic encephalomyelitis and chronic fatigue syndrome.
Davenport, a physical therapist who has spent 15 years researching ME and chronic fatigue, recalled the waves of fatigue-inducing disorders following SARS infections in the early 2000s. Just like ME, he said some studies found that around 30% of recovered SARS patients developed long-term illness.
SARS stands for severe acute respiratory syndrome. The SARS virus, which is called SARS-CoV, is in the same family as the virus that causes COVID-19. The virus that causes COVID is called SARS-CoV-2.
“I would say, from a layperson’s perspective,” Davenport said, “Long COVID is really ME with another name.”
Oller and Davenport are the co-directors of education for a patient-led association called Long Covid Physio. Oller said the organization started in 2020 as a Twitter group-chat between physical therapists who had become Long Haulers after contracting COVID-19. Now, the group organizes to spread awareness about the condition, but also to help educate practitioners about treating chronic fatigue conditions like Long COVID and ME, empowering them to better help their patients.
Many members of Long Covid Physio are themselves, like Oller, Long Hauler patients with a first-hand understanding of living with and treating the condition. Davenport is not a Long Hauler, but considers himself an ally to the community through his work and his research.
A research paper from October 2021 surveyed around 2,000 studies conducted on Long COVID patients. After reducing the pool to about 60 comparable studies, researchers concluded that of the more than 250,000 post-COVID patients, over half had lingering symptoms six months after recovering from the infection.
The paper, published in JAMA Network Open, found that some of the most frequent long-term symptoms reported in these studies were mental health disorders and fatigue or muscle weakness. The most common finding among the studies was a lung abnormality, where the organs showed signs of damage or change in x-rays, MRIs, or CT scans.
“These long-term PASC effects occur on a scale that could overwhelm existing health care capacity, particularly in low- and middle-income countries,” the study said.
PASC stands for Post-Acute Sequelae of COVID-19, which is the World Health Organization’s official term for Long Hauler syndrome.
According to the study, other common symptoms included difficulty concentrating, chest pain, persistent cough, hair loss, and joint pain. Others experienced digestive disorders, heart problems, skin problems, and even ear and throat disorders.
Fatigue and muscle weakness occurred in around 40% of patients in 30 of the reviewed studies.
Living beyond 'tired'
The ME community and many Long Haulers have something big in common, Todd Davenport said. Post-exertional malaise, or PEM, is a fancy way of saying that daily tasks, exercise, and stress can cause some patients to experience a symptom relapse. This is the condition that many in chronic fatigue communities call a “crash.”
As Daria Oller found, what amounts to healthy exercise for most can actually be dangerous for people with PEM.
Oller talked about how she had to learn to balance activity with rest: Too little activity can cause deconditioning, in which the body's stamina level decreases and fatigue crashes happen with even smaller amounts of exertion. But push activity too far, Oller said, and the crash can be debilitating.
A 2019 review of ME/CFS for an MDPI Diagnostics journal briefly discussed the history of the illness’ definition.
After the Centers for Disease Control and Prevention adopted the combination term “ME/CFS” in 1987, it was proposed that having four of more of the following symptoms for more than six months would qualify a patient for the diagnosis:
- brain fog
- sore throat
- tender nodes
- muscle pain or pain without swelling
- headaches
- sleep disorders
- PEM lasting longer than 24 hours
According to the MDPI review, the primary symptom of the condition is PEM, “accompanied by various neurological, cardiovascular, respiratory, and gastrointestinal manifestations.”
Depending on the severity of PEM in a patient, that relapse can happen after tasks as small as getting out of bed, showering, or eating. Some people with PEM are near-permanently bedridden due to their persistent fatigue.
Daria Oller said that some patients lose weight simply because it is too energetically taxing for their bodies to digest food.
For herself, Oller has to strategize around showering and going to work, planning breaks and pauses in her schedule to allow herself to recover from the exertion of daily life.
Emotional and psychological strain can also trigger PEM. Oller experienced a crash after presenting in a virtual panel from the comfort of her home.
Accessing the inaccessible, perceiving the invisible
Davenport said that the process of acquiring a chronic illness diagnosis like ME is “plagued by clinicians not believing patients, because of the lack of an objective test.”
This has been the case for many Long Haulers.
Historically, Davenport said, a patient gets an ME or Long COVID diagnosis after a physician decides they meet case-definition criteria. In other words, the patient’s symptoms must align with an often-changing definition of the illness, and different physicians can interpret those definitions inconsistently.
This can be tiresome and time-consuming for patients, as doctors may order many kinds of testing to rule out other ailments. A patient may see several specialists before finally getting a diagnosis.
You can x-ray broken bones and find cancer with a biopsy. But chronic illnesses like ME and Long COVID are often not something doctors can see. These are invisible illnesses, and the burden often falls to patients to prove what they are experiencing is real.
“So then the journey really becomes one of trying to undo all that clinicians have done to create mistrust with their patients,” Davenport said. “There’s a lot of validation that needs to take place, and trust-building.”
Oller, herself, was hesitant to seek support from a physician after discovering she was a Long Hauler. The idea of advocating for her own care while already struggling with fatigue sounded like more effort than it was worth. She was concerned that doctors would dismiss her lived experiences, despite her education as a clinician.
Healing the future of health care
Davenport acknowledged how difficult it can be for chronically ill patients to access care, even after finally achieving a diagnosis.
“How do you get to this expertise?” he asked. “And how do you get to these treatments?”
Davenport proposed one possible solution to ease the burden: Telehealth. Rather than requiring chronic fatigue patients to tire themselves by appearing in person, telehealth can empower clinicians to reach their patients without doing more damage. A single in-person appointment, he said, could push a PEM patient into a fatigue crash for a few days to a week.
Patients without insurance, Davenport added, face even more obstacles when seeking to access care.
“We have a lot we can learn from,” Davenport said, “if we choose to learn. Learning’s a choice.”
More trouble comes from being an early-pandemic Long Hauler, like Oller. For several months, tests were in limited supply, often given only to those who were sick enough to be hospitalized. Mild possible cases were sent home to isolate and hope for the best.
Oller pointed out that now, some Long COVID clinics only accept patients with a positive test on record. Without that test as proof, many Long Haulers can't qualify for research studies or admittance to the special clinics.
These clinics are the fledgling iterations of what the Long COVID JAMA study called a “whole patient” approach to health care. Instead of sending patients from office to office, a specialized clinic offers an environment where physicians can work together in one place to address individual patient needs.
“I’ve gotten to have those conversations,” Oller said of the collaborative clinic environment. “It’s fantastic.”
Davenport emphasized the need to rethink the structure of disability benefits and care. Reconsidering the system, he said, means looking at the huge amount of paperwork involved and the requirements for proving an illness, especially when that illness is invisible.
“Being healthy is more than just not being sick,” he said. “How do we help someone with chronic illness be healthy?”
Davenport offered a solution. Empathy, he said, is key.
“Hear their stories,” Davenport said, “and find them credible, until you find a reason to not find them credible, instead of the other way around.”
From the author:
Due to my fatigue and asthma, which are both triggered by exertion, I now have a disabled parking placard to use on bad days. Because my ailments are invisible, I worry sometimes about using it. I've heard plenty of anecdotes about people with invisible illnesses being harassed for 'frauding' their way into acquiring a placard.
In 2019, I took a kickboxing class at my community college and got hooked on the sport. I had intended to join a boxing gym when I saved up the money. I haven't touched these gloves in over two years, but I can't bring myself to get rid of them. It feels like giving up on getting better, to consider selling or donating them.
In 2019, I took a mixed martial arts class at the same time I was in kickboxing. My Gi hangs in my closet with my boxing gloves, collecting dust. The short staff is for Filipino stick fighting. The stick material is chosen in part for its lightweight sturdiness, but now it feels heavy in my hand.
I can't bear to part with any of it.
I used to be a commuter cyclist, sprinting up and down hills through University Town Center on an ancient mountain bike. I would ride two miles to get to work, sweat through an eight-hour manual labor shift, and then ride two miles home.
Now, the bike is little more than a patio ornament. Cleaning and doing maintenance on it is more exhausting, now, than riding it ever was.
I separated my personal medical records into two files: pre- and post-COVID. One contains about 25 years worth of documents, and it's less than half an inch thick. The other is after COVID, and is twice the size after only two years.
One of the most frustrating aspects of chronic illness, for me, is constantly organizing, digitizing, and storing new records. You have to be able to prove as much as you can about your conditions to doctors - and to the government, if you're applying for aid. That means holding on to just about everything: Bills, forms, prescriptions, and especially medical letters.
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