Long COVID: Millions have it. Why do we still know so little?


The CDC estimates 17 million Americans experience long COVID. What have patients and doctors learned about the mysterious illness? Graphic by Gabby Quarante/KCRW.

Reda Rountree and her family have long been the cautious type — always wearing seatbelts, looking both ways before crossing the street, and in the earliest days of the pandemic, constantly wearing masks. If she dared to see another living soul, it had to be outdoors. 

But in December 2020, COVID breached the safety of their home. Everyone in her family caught the virus and eventually recovered from their mild bouts. 

But the 48-year-old from Eagle Rock didn’t bounce back like everyone else in her family. Pre-pandemic, Rountree was an active person. She got her 10,000 daily steps in while juggling long hours as a music publicist and president of her kids’ PTSA.

Her illness put an end to all of that. At first, she chalked her symptoms up to stress and grief. Rountree lost her mom at the beginning of the pandemic.

“I'm looking back on my life from those days, and what I really truly thought was depression, which was sleeplessness and feeling fatigued constantly, fluctuations in my blood pressure,” Rountree explains. “What had happened with my mother and then catching COVID that same year, I really just attributed to being rundown.”

In February 2023, Rountree’s symptoms came to a head. As she was leaving her kids’ high school, she was unable to walk to her car — less than half the length of a football field. She was admitted to the hospital. Her blood pressure bottomed out. 

“I had a close call where they took out the paddles,” she recalls. “I thought I was going to die and that it was the end.” 

No one understood what was wrong with her. 

“Everyone in the hospital said, ‘It's all in your head. It's stress. Maybe you're depressed. Oh, it must be mental illness.’ And everyone just brushed me off and dismissed me,” she says. “And then I started thinking, well, maybe it is all in my head.”

What is long COVID — and why is it such a mystery?

It would be another grueling four months before doctors would confirm that it wasn’t all in her head. Rountree is one of the estimated 17 million Americans who suffer from long COVID, an umbrella term for what the CDC has identified as new or recurring symptoms that don’t go away after an acute SARS-CoV-2 infection. The CDC estimates that 1 out of every 9 people who have caught COVID experience long COVID. To date, the agency has identified more than 200 long COVID symptoms, including fatigue, brain fog, nerve pain, and shortness of breath. 

For years, the illness has confounded patients and doctors alike. In some cases, it’s led to misdiagnoses — the condition’s broad and nonspecific range of symptoms can present as an equally varied number of other illnesses. 

“There were several weeks where we thought perhaps I had Parkinson's disease, because so many symptoms mimicked Parkinson's,” Rountree says. “But then I had a variety of other symptoms on top of those. I had started having seizure-like events, tics, similar to a tic disorder, and a myriad of other symptoms. And we just didn't know what was wrong.” 

“We should have the answer”

Dr. Nisha Viswanathan is the program director of the UCLA Health Long COVID Program. Since opening in 2022, she’s seen an influx of patients, including Rountree, who come in exasperated, searching for answers and relief. 

The confusion extends to medical providers. Viswanathan says working with the disease has been incredibly humbling, even as a trained professional: “Our ability to diagnose and treat and understand all these medical conditions is so much greater than it's ever been at any point in history. And it really makes you feel that anybody who comes in, we should have the answer to any of their medical problems.”

She adds, “When you come into this profession to really not only do no harm but to maybe alleviate suffering and to feel that maybe you don't have the tools to do that, it can be incredibly saddening.” 

Graphic by Gabby Quarante/KCRW. 

It’s taken the medical community four years to begin to better grasp what long COVID is — and that it’s a legitimate condition. The National Institutes of Health (NIH) is in the midst of a years-long study examining the long-term impact of COVID in adults. 

“Many patients had noted that they felt gaslighted by the medical community, when they were presenting with these symptoms after their COVID infections and were often told, ‘These are just in your head,’” Viswanathan shares, “I can say, overwhelmingly, the medical community now understands that long COVID is a true condition, and is better at identifying when patients may be struggling with it.” 

Read more: SoCal’s COVID-cautious: Fighting isolation along with the virus

Who gets long COVID, and how is it diagnosed? 

Women are two times more likely than men to develop long COVID, Viswanathan says. Trans people and people with disabilities are also the most commonly affected by long COVID, according to the CDC’s Household Pulse Survey

Diagnosing long COVID is so difficult in part because there are currently no tests that can specifically determine whether someone has it.

Viswanathan and her 10-person team of internal medicine doctors and other specialists use what’s called a diagnosis of exclusion. 

“We exclude other medical conditions before we say that patients have long COVID,” she explains. “And that requires a comprehensive workup to verify that there's not another medical problem that could be causing our patients’ symptomatology.” 

The process includes an exhaustive review of patient medical histories, as well as thorough questionnaires, which doctors use to understand the severity of patient symptoms and how their mental health is fairing. 

As of 2021, the federal government recognizes long COVID as a protected disability under the American with Disabilities Act

Treating long COVID: An uncertain path to recovery

There is no cure for long COVID or medications to specifically treat it. Treatment can be piecemeal, directed to the specific symptoms each patient experiences. Sometimes, the illness improves or completely resolves on its own. 

“Is it like cancer, which we say is in remission?” Viswanathan asks. “Or do we say this is a long COVID resolved, they're permanently cured? We have no way of saying that yet, because we have no way of following them at the molecular level.” 

While Rountree’s long COVID diagnosis has given her validation and emotional relief, treating it remains precarious. She has enrolled in lung retraining classes through UCLA’s partnership with the LA Opera, which have helped alleviate pain and make it easier to breathe. She also does weekly acupuncture, which helps address inflammation. 

Read more: Opera to treat long COVID: Mindfulness, breath exercises help heal trauma

Still, Rountree remains on what appears to be a downward health spiral. She was forced to resign as president of her kids’ PTSA and is no longer able to work. Just last year, she was hospitalized four times. 

Rountree has also been diagnosed with postural orthostatic tachycardia syndrome (POTS), a circulatory condition causing lightheadedness and fainting that has forced her to use a wheelchair. Chronic fatigue and pain upon inhaling are among her daily challenges. 

But Rountree finds relief in the daily strides emerging alongside them. She has a new personal record of how long she can stand: three minutes. 

“It's hard. It's frustrating. … And sometimes, exercise makes symptoms worse,” Rountree says. “I can walk a very short distance. But honestly, this time last year, I didn't know if I was going to even be able to do that.”

Scientists are making new long COVID breakthroughs all the time. There are new and existing treatments that are available to patients, like lung retraining and prescribing SSRIs to treat low serotonin levels. The National Institutes of Health has also boosted its funding for long COVID research by nearly half a billion dollars over the next four years. 

Ultimately, one thing about long COVID remains definitive — the only way to prevent it, is to not catch COVID in the first place.