People With Lingering Coronavirus Symptoms Are Turning to Post-COVID Clinics
Dozens of centers have popped up to treat the growing number of Americans whose symptoms just won't go away
On April 17, Andréa Ceresa got sick. She felt like she had the flu, with serious stomach trouble and shortness of breath—both markers of what is now an all-too-familiar diagnosis across the country: COVID-19. She went to the emergency room, but during those chaotic early days of the pandemic in the U.S., her symptoms weren’t considered serious enough to warrant admission to the hospital in New Jersey near where she lives.
At the time, experts thought that most cases of COVID-19 could be treated at home and would resolve after a few weeks, three to six at most. But for Ceresa and many others who fell sick and were never hospitalized, that’s not what happened.
“Nine months later I’m still sick, still disabled, not working,” she says. Before Ceresa fell ill, the formerly healthy 46-year-old worked as a dental office manager during the day and a singer at night, “running around the stage,” she says. “A couple months before, I was singing at The Stone Pony in 6-inch high heels.”
In August, she began receiving treatment for her ongoing illness at the Center for Post-COVID Care at Mount Sinai in New York City. Yet her symptoms—especially debilitating nausea that made it almost impossible to eat—were still severe enough to land her in the hospital in November, first for a few days in New Jersey, and then for nine more days at Mount Sinai.
As recognition of this post-COVID health crisis grows, it’s becoming clear that clinics like Mount Sinai’s will be in high demand for months and potentially years to come. These clinics offer frustrated patients a chance at a unified treatment plan or at least the opportunity to talk to doctors that have some familiarity with the myriad strange aftereffects of the illness.
When Symptoms Won't Go Away
Severe infections with other viruses can have aftereffects that last for months or years. But physicians CR spoke with say that it’s surprising to see so many people who still aren’t fully recovered even after COVID-19 infections that were not especially severe at the outset.
There are varying estimates of the percentage of people with COVID-19 that have health issues that don’t fade, says Zijian Chen, MD, medical director at Mount Sinai’s Center for Post-COVID Care. He estimates that 10 percent of COVID-19 patients may have some sort of lingering health problem, though some studies indicate the percentage could be much higher.
One study out of the Netherlands looked at 2,001 nonhospitalized patients with confirmed or suspected COVID-19 and 112 patients sick enough to be hospitalized patients but not admitted to the ICU. It found that about three months after infection, 87 percent still had some fatigue and 71 percent had shortness of breath.
Another recently published study that looked at COVID-19 patients treated at a hospital in China found that many still experienced fatigue, muscle weakness, anxiety, sleeping problems, and pulmonary problems six months later; more than a fifth of those who didn’t need oxygen when they initially got sick were still dealing with lung problems, for example.
“That infection is not one and done.”
Many of the patients at Mount Sinai’s post-COVID clinic are young, in their 20s, 30s, and 40s, according to Chen. And they have a wide range of symptoms, some of which can be severe.
At Penn Medicine’s Post-COVID Assessment and Recovery Clinic in Philadelphia, “the majority [of patients] have multiple system concerns,” says Benjamin Abramoff, MD, the director of the clinic and an assistant professor of clinical physical medicine and rehabilitation.
Commonly reported symptoms include fatigue, lack of endurance, weakness, insomnia, anxiety and depression, headaches, pulmonary issues, and dysautonomia (a neurological problem affecting involuntary functions like heartbeat, breathing, and digestion). Yet “every week there’s something we haven’t seen before,” Abramoff says. One recent patient reported feeling like their whole body was on fire for a few hours after being exposed to cold weather.
Ceresa’s lingering issues include brain fog that she says makes it hard to carry on a conversation, as well as nausea and gastrointestinal problems that she says led to severe malnourishment. When she was hospitalized in November, she says doctors discovered a hormonal issue that they believe is related to her COVID-19 infection. Ceresa is now being treated with steroids, which she says has finally reduced her nausea and made it easier to eat.
While Ceresa’s symptoms continued to worsen from the time she was first infected in April, other people develop post-COVID symptoms after what at first seems like a full recovery. Some actually object to the term “post-COVID,” as debilitating symptoms show that their bout with the disease is not over.
“I felt better for a couple of months,” says Berrent, of Survivor Corps. It was only later that the emergence of symptoms like nausea and headaches led her to seek treatment at Mount Sinai’s Post-COVID Care Center. In September, she says, she developed glaucoma.
Researchers have started to catalog the wide variety of symptoms COVID-19 long-haulers experience. In a survey to be published later this month of more than 5,600 people who had experienced COVID-19, largely recruited through Survivor Corps, people listed more than 80 ongoing health problems, categorizing them by how severe they were, how many people reported that symptom, and how long these problems continued to persist.
The survey helps identify “the symptoms that seem to be lasting the longest and causing the most significant pain and discomfort,” says Natalie Lambert, PhD, an associate research professor at the Indiana University School of Medicine in Indianapolis, who conducted the survey.
At post-COVID clinics, doctors are trying to understand exactly what causes the symptoms these patients report, why they are so varied, and how they can best be treated.
Research into these questions is still at the very early stages, Abramoff says. Some people may have damage from the initial infection, like scarring or fibrosis in the lungs, he says, while others may have damage caused by some autoimmune reaction, where the body’s immune system mistakenly attacks itself.
Abramoff says that once researchers better understand the various causes of persistent symptoms, they may be able to identify different phenotypes of the illness, grouping patients with similar causes of symptoms together. Those groups could help doctors begin to develop better treatments for different forms of long COVID-19.
What’s more and more clear is that given the millions of people who have had COVID-19 in the U.S., there are going to be a lot of people with lingering problems who need treatment, Abramoff says—at least a million or more already, even with a very conservative estimate, he says. And with cases still rising around the country, more and more people may be seeking treatment for ongoing problems in the coming months.
That’s where post-COVID centers like the ones at Mount Sinai and Penn come in.
The Rise of Post-COVID Clinics
Doctors at Mount Sinai first decided to create a post-COVID clinic, which opened in May, after seeing how many patients were admitted to the hospital with the disease, Chen says. New York City was hit hard at the beginning of the pandemic, with more than 200,000 COVID-19 cases and more than 54,000 hospitalizations in March, April, and May. The idea was to help those who had been gravely ill resume normal life.
But then doctors started noticing something unexpected: Many people who had not had severe COVID-19 cases and had never been hospitalized still needed follow-up care. Today, of the approximately 2,000 post-COVID patients at Mount Sinai, 80 to 85 percent were never admitted during their initial acute infection.
Abramoff says Penn decided to start its post-COVID center to create some sort of centralized access point for treating patients showing up to see different specialists—neurologists, pulmonologists, and cardiologists—all with different COVID-19-related issues. Having a post-COVID center makes it possible to coordinate care across different areas of expertise, he says, and helps doctors figure out what works for these patients and what doesn’t.
“Every week there's something we haven't seen before.”
Similar clinics are popping up all over the country. An online list of post-COVID care centers maintained by Survivor Corps now includes at least 90 centers in 31 states and Washington, D.C. Many people who seek out these clinics are looking for doctors who understand and believe that COVID-19 can leave lingering effects—one of the first challenges for long-haulers, Berrent and Ceresa say.
At places like Penn and Mount Sinai, people are first given a comprehensive assessment to determine which sorts of tests might help identify the causes of their symptoms and which sorts of specialist referrals might help them develop a treatment plan. “Many patients have probably seen doctors before they come in,” Chen says. “We look at what has already been done for them, then we pick up from where those doctors have left off.”
Ceresa says that after trying a number of doctors in New Jersey—even one spot that advertised itself as a post-COVID center but turned out to be a doctor trying to start a center that was not yet truly operational—she put her energy into getting into Mount Sinai. High demand and the fact she didn’t have a positive COVID-19 test in the first place—a common problem for people who fell ill before testing was widely available—both slowed the process. But eventually, she was able to get an appointment, and says that the doctor managing her care now has been able to direct her concerns to appropriate physicians in many disciplines.
As Ceresa learned firsthand, some places that advertise as post-COVID clinics can’t treat the full range of long COVID-19 issues, Berrent says. Some are pulmonary rehab centers now focused on COVID-19 patients, which may help a subset of patients, especially those who were on ventilators. But they might not be able to treat other concerns, including ones that are neurological, gastrointestinal, or cardiac.
Even at hospital clinics full of specialists like Mount Sinai and Penn, doctors are still learning what works. Some patients are healing quickly with treatments such as physical and cognitive therapy, Abramoff says, others much more slowly.
Every patient is different, with different pathways to treatment, Chen says. Some might require pulmonary rehabilitation or an inhaler, while some might need heart medication or speech therapy. Yet “some patients unfortunately don’t seem to be making much improvement,” Abramoff says. The hope is that once the causes of symptoms are better understood, new treatments will be easier to develop.
Cost, too, can be a serious concern. Clinics at major medical centers take insurance, but some insurance providers don’t cover out-of-state medical facilities, which can make it harder to treat some patients, according to Abramoff. And for people without insurance or with inadequate coverage—which includes many of the people most vulnerable to COVID-19 in the first place—the out-of-pocket costs can be prohibitive.
When Ceresa couldn’t work and lost the insurance she had through her job, she was able to get insurance through the New Jersey exchange. But the plan doesn’t cover her treatment across state lines at Mount Sinai, so she has been paying for her post-COVID care using crowdfunding campaigns.
With the number of people who will need treatment, the limited number of post-COVID care centers, the mysterious nature of some post-COVID symptoms, and the potential cost of treatment, the challenge ahead appears daunting.
If You Are Still Feeling Sick
If you’re still feeling sick after recovering from COVID-19, it’s important to seek treatment, Chen says, to rule out potentially serious—and often treatable—problems with the heart or other organs.
Start by looking for a post-COVID clinic in your area, though Berrent and Ceresa caution that getting an appointment can take time.
If there isn’t one in your area, ask if you can be seen virtually, Abramoff says. And find a local healthcare provider to work with, too, preferably one who is your primary provider. That physician may be able to consult with specialists, possibly including some recommended by the post-COVID clinic.
It can also help to connect with other people with similar concerns, says Lambert, the Indiana University researcher. She says that many people find some relief talking through common concerns with people in groups like Survivor Corps.
As new virus variants spread and our knowledge of the long-term consequences of infection grows, taking every precaution you can to avoid COVID-19 in the first place is more important than ever. There have been more than 400,000 deaths from the coronavirus in the U.S., yet those staggering numbers alone cannot adequately convey the full toll the disease has taken on the millions who have been infected. “That infection is not one and done,” Chen says.