When Tony Marks, 54, director of public safety for a software company in Southern Pines, NC, came down with COVID-19 last January, he thought he would bounce back after a few days. “I know several people who have had COVID,” he says. “They felt bad for a few days and then they were good.”
But Marks’ mild initial symptoms — sore throat, fever, and cough — turned into severe ones and landed him in the hospital ICU, where he spent six terrifying days, alone and delirious, his oxygen levels and heart rate fluctuating wildly. When he was finally discharged, he was determined to keep his lungs clear and fully recover. “But I struggled to walk to the top of our road, which is just a hundred feet away,” he says.
Marks’ battle has never let up. Over the last seven months, he has fought a bewildering array of symptoms — crushing fatigue, constant leg pain, the sensation of electricity passing through his limbs, even debilitating cognitive effects that eventually forced him to resign from his job.
But the worst of his symptoms may be the psychological ones. In addition to his anxiety and uncharacteristic irritability, “I hear voices in my head encouraging me to give up,” says Marks, who has been married for 31 years and recently watched his eldest son get married. “They say, ‘You’re not going to make it. You can’t win this fight.’”
Help for the walking wounded
Marks has joined the growing ranks of people with long COVID, or post acute sequelae of SARS-CoV-2 infection (PASC) — people who develop long-term symptoms after initially recovering from COVID-19 or who never get better at all. Medicine is starting to respond to the perplexing needs of these so-called long haulers. Over the last year, dozens of long COVID clinics have popped up around the country and doctors are cobbling together treatment plans for their patients.
The help can’t come fast enough. Clinics usually have waiting lists that stretch out two or three months or more. As the pandemic rages on and cases rise, so do the numbers of patients with persistent medical problems that erode their quality of life.
Estimates of the number of long COVID patients vary, but “most of the high-quality studies put the number at around 10% of patients,” says Benjamin Abramoff, MD, head of the Post-COVID Assessment and Recovery Clinic at Penn Medicine in Philadelphia. “Part of that depends on the definition of long COVID, which many people see as still having symptoms at the 12-week mark.”
Lingering COVID-19 symptoms commonly include fatigue, headaches, brain fog, shortness of breath, cough, sleep disturbances, anxiety, and depression. But patients have also reported rashes, hair loss, dizziness, heart palpitations, and a slew of other complaints.
Not surprisingly, many people with long COVID were very sick and spent days or even weeks in ICUs and on ventilators. Any patient in intensive care can suffer long-term physical, mental, and cognitive challenges, collectively termed post-ICU syndrome.
However, “more than 80% of the people we see in our clinic had mild illness and did not have to go into the hospital,” says John Baratta, MD, founder and co-director of the UNC COVID Recovery Clinic at UNC Health in Chapel Hill, NC. “Many of these ‘Tylenol-and-Gatorade cases’ develop lingering health effects that prevent them from doing normal activities at home and being able to work. This is very different than the course of recovery from other viruses.”
After Kellie Ruiz, 27, a geospatial analyst in Chicago, IL, contracted COVID-19 in March 2020, she experienced searing pain when she breathed, pleurisy, night sweats, and overwhelming exhaustion that she battled alone at home. Since then, new symptoms like gastrointestinal pain when she eats and sharp rises in her liver enzymes have emerged.
But it’s the fatigue that gets to her. Even after a good night’s sleep, she needs a morning and an afternoon nap, fitting in work when she can. “I’m sleeping more than I ever have in my life,” says Ruiz, who used to cycle to the gym and swim laps for 30 minutes each day before work.
Unfortunately, “there is no clear understanding of the underlying cause of long COVID,” Baratta says. “And so many different parts of the body are affected. Therefore, there is no magic bullet cure.” Treatment, he says, tends to focus on relieving individual symptoms.
The process starts with examining new patients from head to toe. Post-COVID clinics run multiple tests to rule out underlying conditions that might have been missed, like low vitamin levels and thyroid problems, along with imaging tests of the head, heart, or lungs if symptoms warrant it.
The clinics also typically take a multidisciplinary approach to caring for patients. At the UNC clinic, for instance, a team of specialists, including rehabilitation physicians, internal medicine doctors, neurologists, and physical and occupational therapists, meet individually with new patients and then come together to devise treatment plans drawn from their experience with similar ailments.
Doctors are particularly challenged when patients have symptoms, such as shortness of breath or chest pain, but imaging tests are clear and there seems to be no physical reason for these health woes.
Of course, there are some problems that will never heal. “The science isn’t there yet to help us heal people with scar tissue in the lungs,” says Marc A. Sala, MD, who oversees the care of long-haulers with pulmonary issues at the Northwestern Medicine Comprehensive COVID-19 Center in Chicago. “But other people have varying degrees of inflammation, which can be responsive to steroids in certain cases.”
Other treatments appear to work for common post-COVID-19 ills, helping some people reclaim some control over their lives, says Zijian Chen, MD, medical director of the Center for Post-COVID Care at Mt. Sinai Health System in New York City. At the center, the first of its kind in the country, neurologists and neuropsychologists use training techniques that they might use with a stroke patient to improve cognitive functioning in people with brain fog and other thinking problems, for instance.
“It’s like rehab for the brain,” says Chen. “We work on memory exercises and guide patients through progressive learning to regain function. Hopefully at the end, you’ll be back where you were [before you got sick] — but at least better than where you were” before treatment.
Fatigue is one of the toughest symptoms to resolve. Paradoxically, a structured exercise program or multiple sessions with a physical therapist can be an effective way to build back strength after months on the couch, says Abramoff. “But we’re careful to do that without exacerbating symptoms or risking relapse,” he says. “And we’re also looking at contributing factors like insomnia or obstructive sleep apnea.”
Medication can be helpful for mental health disorders, pain, and sleep, although the side effects and interactions must be taken into account. Stimulant medications like those commonly used to treat ADHD can be used to boost energy and tackle brain fog, says Baratta.
Marks, who was finally able to get into the UNC clinic in July, takes an antidepressant, for both his pain and his anxiety, while he waits to start physical therapy in November.
When Ruiz was able to access care at Northwestern’s clinic, she was given separate prescriptions for her stomach issues and shortness of breath — stopgap measures before she starts pulmonary therapy in September (tests showed her right diaphragm was insufficiently responsive to a breathing challenge). Inhalers can help to open up the airways and reduce the inflammation that may be behind some cases, says Baratta.
Patients who still struggle to breathe after their bout with COVID-19 can also use breathing devices to help strengthen the muscles responsible for breathing. And Baratta recommends breath work, a type of breathing exercise that promotes deeper and slower breathing.
“We’ve learned through the work of other centers that some patients after COVID seem to have short, shallow breaths akin to hyperventilating, even though there’s no underlying medical problem or permanent damage,” he says. “That can contribute to lower oxygen levels because they’re not forcing fresh air deep into the lungs. Breath work has proven to be useful for this group.”
The problem is real
Even if patients learn that little can be done for them, they’re often gratified just to be heard and taken seriously, “I cannot tell you how many times I’ve heard someone say, ‘Thank you for validating this,’” Sala says. “‘People told me it was all in my head.’”
Ruiz had the same experience. “The doctors at Northwestern have given me hope,” she says. “I’m still in the condition that I am in. But I finally have people who are looking after me.”
The good news is that most people do improve, the experts say. “Patients are getting better. It’s just taking a frustratingly long time,” says Sala.
Marks is circumspect about his ongoing health troubles. “If this is my struggle from now on, at least I get to wake up every day,” he says. “I still get to enjoy my family and watch it grow.”