“Long COVID” is more likely to affect older people and those who have been hospitalized, but younger people with milder symptoms are not immune to lingering symptoms. One plausible explanation is that the infection results in the activation of autoantibodies.
As the COVID-19 pandemic’s third winter continues, the omicron variant is still at rise, sweeping the U.S., swamping understaffed emergency departments and filling hospital beds.
If there is a glimmer of good news, it’s that the omicron version of the SARS-CoV-2 virus that causes COVID-19 seems less virulent with far fewer hospitalizations and deaths as a proportion of cases. But it’s also now clear that an impressive number of people who have had COVID-19 will likely have what the National Institutes of Health calls “post-acute sequelae of SARS-CoV-2 infection (PASC),” more commonly called “long COVID.” It is too soon to tell, though, whether cases caused by the omicron variant will result in long-term health problems.
The CDC defines long COVID as “a range of symptoms that can last weeks or months after first being infected with the virus that causes COVID-19 or can appear weeks after infection.” Long COVID can happen to anyone who has had COVID-19, says the CDC, even if their illness was mild or asymptomatic.
If a batch of new studies is correct, that “anyone” could be up to half of all COVID-19 survivors. That means millions of Americans, and perhaps 100 million people worldwide, will live with the lingering, in some cases debilitating, aftereffects of the novel respiratory virus.
“I am seeing people now who have gotten COVID a second time,” says Gary Rogg, M.D., co-director of the Post-COVID-19 Recovery Program for the Westchester Medical Center Health Network in New York. “Those who have long-hauler, post-COVID symptoms the first time will be remarkably worse again.”
Pooh-poohed no longer
“Long hauler” — that was the sobriquet for cross-country truckers. Not anymore. Today it’s anyone who is experiencing any of an array of post-COVID-19 symptoms: fatigue, cough, shortness of breath, chest pain, kidney dysfunction, joint stiffness, loss of smell and taste, and headache. Long-haulers also report a variety of emotional and neurological symptoms, including “brain fog,” which includes difficulty concentrating, memory loss, anxiety and depression.
Early in the pandemic, when researchers and doctors were struggling to get a handle on the virus, few understood that symptoms could persist after the virus had cleared the body. Instead, they told patients who reported the symptoms that it was all in their head.
“A lot of physicians pooh-poohed patients,” Rogg says. “People got very, very distressed about that. We’re finding in a lot of people that it creates a reactive depression and creates anxiety, almost like post-traumatic stress disorder.”
Researchers are now doing work to understand the causes of long COVID. Older people and those who were hospitalized for COVID-19 seem to be at greater risk of lingering disease, but young people with milder cases also experience long COVID. It is not as simple as age and hospitalization causing long COVID.
Susan Vehar, M.D., a pulmonologist at Cleveland Clinic, and her colleagues published an article in the Cleveland Clinic Journal of Medicine about long COVID. They noted that the sickest, hospitalized patients had the highest prevalence of protracted symptoms of long COVID, citing research that has found that more than two-thirds of these patients have continued symptoms six months after recovery from acute COVID-19. The article also cites studies from Italy and Michigan showing that two-thirds of patients recovering from COVID-19 had symptoms 60 days after the acute infection was over.
The Italian study found that only 18 of 143, or 13%, of patients were “completely free” of aftereffects from an acute case of COVID-19. In the Michigan study, the risk of the long COVID was higher among previously hospitalized patients versus those seen on an outpatient basis, and long COVID was twice as likely in patients with severe symptoms at 30 days. But the researchers also found that 20% of otherwise healthy young people, ages 18 to 34 years, with no previous chronic illnesses and mild COVID-19 cases, experienced long-haul symptoms.
Vehar and her colleagues mentioned that other studies have shown at least one persistent COVID-19 symptom, most commonly fatigue or dyspnea, in more than half of patients after 110 days or 180 days, suggesting the possible duration of long COVID has yet to be determined.
Meanwhile, a meta-analysis of 40 studies from 17 countries conducted by researchers at the University of Michigan School of Public Health published as a preprint in November 2021 found that 43% of COVID-19 patients who were not hospitalized, and 57% who were, had long COVID symptoms.
Rogg says most patients experience fatigue. The second most common complaint is brain fog. “They describe it like someone waking you from a really deep sleep and they ask you a question,” he explains. “You know who they are, you’re aware of what is going on, but getting the answer out is the problem.”
So far, the best theory about what causes long COVID is that the virus tricks the immune system into creating or activating autoantibodies that mistakenly target the body’s own tissue.
“One of the things we hear from everybody is that there is this wave-like pattern” says Rogg. “They feel like they are getting better and then it feels like it starts all over again. As time goes by those peaks, feeling miserable, do get a little bit less, and the frequency of the wave also gets less.”
In a preprint, researchers from the National Institutes of Health said they found COVID-19 in almost every organ, including brain tissue from autopsied patients who died from the disease. If the findings hold up, they suggest that the virus can cross the blood-brain barrier.“ Even if the leading theory (about brain fog) is that it is caused by an inflammatory response of the brain, the question then is: Why is (the brain) having an inflammatory response?” Rogg asks. “The idea is, of course, that the virus gets in there.”
Treatment for long COVID at the Westchester recovery program depends on the individual’s symptoms. Patients are first examined and evaluated, including cardiac, pulmonary, and neurological tests. Those complaining of fatigue are treated with anti-inflammatory agents like naproxen, ibuprofen and, in some cases, steroids to quiet the immune system response.
Those for whom concentration is an issue are given puzzles, word scrambles and crossword puzzles, while patients with chest pain or breathing complaints enter a carefully monitored, graded rehab program. For every patient, the care involves managing expectations, says Rogg.
“I tell them, ‘Do not focus day to day,’” he says. “I tell them to look back every week or two and see how they feel compared to a month ago. If you can get people to refocus that way, they will come back and say, ‘I’m not good yet, but I’m better than I was a month ago,’ then you start to see that glimmer of hope in their eyes.”
Robert Calandra is an independent journalist in the Philadelphia area.