Long COVID — or post-acute sequelae of SARS-CoV-2 (PASC) — continues to have its critics, despite being a nationally recognized condition that’s been heavily investigated since the start of the COVID-19 pandemic.
The condition, which causes a range of lingering neurological, digestive, cardiac and respiratory symptoms, has affected millions of people, forcing many to give up their everyday activities or leave the workforce. Because long COVID is such a heterogeneous condition, in that it impacts people so differently, it’s been tough for researchers to identify its root cause. As a result, long COVID has been underdiagnosed, debated and dismissed.
“Just because something is poorly understood doesn’t mean it is not ‘real.’ People are suffering from long COVID, and we need to find solutions to help,” Dr. Linda Geng, the co-director of Stanford Health Care’s Post-Acute COVID-19 Syndrome Center, told HuffPost.
Below, we set the record straight and address some of the most common misconceptions people have about long COVID.
Myth #1: You can only get long COVID after a serious case of COVID.
It was once widely believed that the only people who got long COVID were those who’d been severely sick with COVID, but that take has since been debunked. Though the risk of long COVID is higher among people who were hospitalized for COVID, it can definitely affect people who had milder infections, along with those who were completely asymptomatic.
Geng said that most long COVID patients treated in her clinic were never hospitalized for COVID and did not have severe infections. Geng’s records match nationwide evidence that has found that the majority of long COVID cases have occurred in people with mild infections.
Most long COVID cases are in patients with a mild case of the illness, and the majority of overall COVID-19 cases are mild, said Dr. Clay Marsh, West Virginia’s COVID-19 czar and the chancellor and executive dean of West Virginia University’s Health Sciences program.
Myth #2: Long COVID is a psychological issue.
Some people have dismissed long COVID as a psychological issue, in part because our tests haven’t been able to clearly pinpoint the root causes of the condition.
“A major challenge with post-COVID is that often the tests we have available do not show the cause or extent of people’s symptoms,” said Dr. Aaron Friedberg, the clinical co-lead of the Post-COVID Recovery Program at The Ohio State Wexner Medical Center.
While there are no measurable physical changes in some patients, many others have identifiable organ damage, an elevated heart rate and changes in blood pressure, Geng said. Research has identified multiple potential mechanisms for long COVID, including a hyperactive immune response, damaged cells from bodywide inflammation, lingering virus, blood clots, changes in gut flora and a dysfunctional nervous system response.
“Long COVID is clearly a physiological and not a psychological disease,” Marsh said.
Myth #3: Long COVID only happens to people with underlying health issues.
The majority of patients at Geng’s long COVID clinic in California were previously living healthy, active lives. Most didn’t have a chronic illness or an identifiable risk factor putting them at risk for long COVID. Geng’s takeaway: Long COVID can happen to anyone.
Having one chronic condition can boost your risk of developing another — and long COVID is no exception, according to Friedberg. For example, underlying health conditions like Type 2 diabetes, connective tissue disorders and allergic rhinitis are thought to be risk factors for long COVID — but then again, about one-third of people with long COVID had no preexisting conditions.
There are “plenty of people who were in great health prior to COVID-19 and then had a radical change in their life circumstances when they developed significant post-COVID symptoms,” Friedberg explained.
Myth #4: Long COVID only lasts a couple of months.
Recovery time varies from person to person — symptoms can last weeks, months or even years. In most cases, post-COVID symptoms will improve with time, but according to Geng, in some patients, symptoms have persisted for over two years with no clear end in sight.
Unfortunately, that experience isn’t uncommon: A large study from Scotland found that roughly 1 in 20 COVID patients had not recovered at all 18 months after their initial infection. While medications, counseling and occupational therapy can aid in recovery, there’s no quick fix for long COVID (yet).
“We are definitely still seeing new, severe post-COVID cases even from recent infections — the risk is still present of having significant post-COVID symptoms with a new COVID-19 infection,” Friedberg said.
Myth #5: Long COVID is rare.
Approximately 11% of people who contract COVID experience symptoms of long COVID. That might not sound like a lot, but it amounts to millions of people (estimates suggest between 19 million to 30 million Americans have been affected by long COVID).
The good news: Long COVID is getting less common. Some reports suggest that the vaccines help prevent long COVID and that some variants are less likely to cause it (though the evidence has been mixed). At the same time, reinfections — which are driven by waning immunity and new variants — are associated with an increased risk of long COVID.
As long as COVID’s around, it seems that long COVID will be, too. “There is no guarantee against long COVID except to not get COVID in the first place, but it looks like COVID is likely here to stay, so I predict that long COVID is likely here to stay as well,” Geng said.
CORRECTION: A previous version of this story incorrectly described a statistic from the Scotland study. The figure describes the proportion of patients who hadn’t recovered at all, not the proportion who still had symptoms.