When COVID Doesn’t Go Away

About one-third of people have serious health problems weeks or months after a bout of COVID-19. Many had only mild symptoms and no known health problems before they got sick, though the odds of health complications remain higher for people who contract severe COVID. Stanford University researchers found that nearly three-quarters of COVID patients who were in the hospital or ICU reported lingering symptoms.

The symptoms, called long COVID, long-haul COVID, or post-acute sequelae of SARS-CoV-2 (PASC), can be debilitating. Long haulers often experience crushing fatigue, headaches, and brain fog that makes it hard to think. There’s also shortness of breath, a racing heart rate, short-term memory lapses, and loss of taste or smell. 

Some struggle to complete the most basic tasks, like take a shower or brush their teeth. And many are on disability or have taken medical leave from work or school. “These people went from having complete mastery over their bodies to no control whatsoever,” says David Putrino, director of Rehabilitation Innovation at Mt. Sinai Health System in New York City.

Long Haulers and Mental Health

In one of the first studies to be released on long haulers, researchers found that nearly a third of participants received a diagnosis of a neurological or psychiatric condition within six months of their initial COVID infection. Anxiety and depression were among two of the most common conditions; however, new research also shows a greater risk of psychosis, or a loss of contact with reality, once considered rare in COVID patients. 

Changes in mental health conditions primarily strike people who were seriously ill with the virus. Yet untangling the mental health aspects of long COVID can be challenging. Researchers at the University of Oxford, who completed one of the largest studies of neuropsychological symptoms in long haulers to date, think these changes may result from an overwhelming inflammatory response to the virus. 

Others, like Putrino, say it’s possible long-haulers are stuck in the emotional experience of COVID — the trauma of being sick, losing loved ones, and suddenly developing a strange chronic illness “that no one is telling you is going to go away.” 

What Causes Long COVID?

Long COVID research is in the early stages, but there’s no shortage of theories as to why some people, especially those who are young and previously healthy, turn into long haulers. There are likely several causes:

• Depression, anxiety, or an autoimmune disease like rheumatoid arthritis may make some people more susceptible. In one study, long haulers were twice as likely to have a mood or autoimmune disorder as the general population. 
• Large bone marrow cells may migrate to the brain during COVID, blocking or reducing blood flow to the cerebral cortex, which controls thinking and memory. 
• The coronavirus may permanently change certain genes, even in people who never had symptoms. 
• Long COVID might be a post-viral syndrome, similar to those that follow other viral infections, including the flu.
• Long haulers may still have a small amount of coronavirus RNA in their bodies. 
• People with lingering COVID symptoms may have dysautonomia – a system disorder with the autonomic nervous system, which regulates breathing, heart rate, and digestion.

Treating Long COVID

Unfortunately, about 90% of people with long-haul symptoms, including brain fog and exhaustion, have no detectable medical reason for their symptoms. Experts remain unsure about the right treatment for them, though it usually involves a team of mental healthcare professionals, physicians, physical therapists, and respiratory specialists.

“Breathwork encourages people to retain more carbon dioxide and can cause an immediate improvement in symptoms,” Putrino says. “With physical therapy, you have to start at the lowest possible level because patients are so weak. They’re out for two days if you push too hard. But over time, we see significant improvements in many areas, especially fatigue.”

Patients are also urged to avoid anything that triggers symptoms, like hot showers, overexertion, and overeating.

Putrino says these methods help some, but not all patients, and progress is slow. “It’s a year-long rehabilitation for many people,” he explains. And he adds, “There’s no magic bullet, no miracle cure. We have to manage expectations.”

Treatment Hard to Find

About 60 COVID recovery clinics have opened across the country, but there are already long waitlists. COVID recovery centers at Cleveland Clinic and Penn Medicine are booked months out. And the racial and ethnic health disparities that were so glaring during the pandemic apply to post-COVID care, too. 

“There are whole groups of people who don’t know anything about post-COVID care,” Putrino says. “Most people who are presenting at clinics are white and middle-class. They’re people with a lot of determination, resources, and private insurance.”

Yet patients of all races can have a hard time being taken seriously, especially before long COVID was recognized as a legitimate disorder with a real name and a $1.15 billion research budget granted to the National Institutes of Health by Congress. 

“Pre-COVID, there were a lot of people showing up [at doctors’ offices] with nonspecific symptoms, and they were being treated with formula medicine as opposed to being very patient-centric and symptom-centric,” Putrino says. “This is a giant rolling health care crisis that will intersect with every aspect of American life. One of the things that physicians have to do now is listen to what patients are telling them.”

If you are experiencing Long COVID symptoms, talk to your doctor and be sure to stay up-to-date with the CDC’s Post-COVID Conditions page.