At least four days a week, Kate Porter feels the heat rising within her, the inevitable return of the fevers that have plagued her for months. Merely walking from one room to another in her Beverly home can set her heart pattering at 140 beats per minute. Mounting a flight of stairs leaves her breathless.
Porter, 35, was healthy and active until mid-March, when she came down with COVID-19.
“So many people think it’s just life or death,” she said. But Porter, and others like her, are stuck in between — alive but unable to return to their previous lives.
No one knows how many people there are like Porter, but many thousands have gathered in social media groups, often conducting their own research.
They call themselves “long-haulers”: COVID-19 patients who continue to endure symptoms weeks and months after the initial infection, despite no sign of the virus remaining in their bodies. Most were never hospitalized, so their lingering symptoms cannot be attributed to the effects of prolonged hospital stays.
The list of symptoms they report in patient-run surveys is long — longer than the government’s official list. Among the most common are fatigue, body aches, shortness of breath, and difficulty concentrating. But some people have chest pain and palpitations, or numbness and tremors in a limb, or intermittent fevers, dizziness, even hallucinations. It’s common to start to get better and then suddenly get hit with new symptoms.
Lauren Nichols, a 32-year-old long-hauler who has been suffering with nausea, vertigo, painful breathing, and other symptoms for more than five months, put it this way: “You trust your body. You think your body is going to bounce back because it always had. You trust the medical system, because it always had answers. Now you can’t trust either.”
Nichols and Porter both expressed surprise at how little interest the long-haulers’ plight has sparked among Boston’s esteemed medical centers. Nichols, who works for the federal government from her home in Back Bay, said she has enrolled in several studies based in California but has found nothing local. Porter, a marketing director for a Boston company, has created a website listing resources and current research projects, many based in the United Kingdom.
The Globe contacted all of the region’s teaching hospitals and found no one specifically studying long-haulers, although a couple of researchers are planning to gather data on COVID-19 symptoms over time.
Spaulding Rehabilitation Hospital recently opened a clinic offering post-COVID-19 care, but so far it has only seen patients who had previously been hospitalized, according to a spokesman. Most long-haulers — 93 percent in one patient-led survey — were never sick enough to need hospital care.
Dr. Zeina Chemali, a behavioral neurologist and neuropsychiatrist who heads Massachusetts General Hospital’s McCance Center for Brain Health, said she has treated post-COVID-19 patients with persistent problems, most commonly fatigue and brain fog. Former go-getters who never napped suddenly find themselves unable to get off the couch, never mind navigate the complexities of their jobs. Chemali refers some of her patients for cognitive rehabilitation, where they do brain exercises. Some have taken stimulants to help them regain focus.
“People do get better,” Chemali said. “Some people, after a couple of months, reported feeling better and wanting to go back to work. Some people are making micro-achievements in their goals. I’m sure there is a huge population out there not coming to be seen, just staying at home.”
That’s one of the reasons why, despite multiple reports in the media, long-haulers can feel invisible to the medical system.
For those never admitted to the hospital, “nobody even knows we’re here,” said Jenny Berz, a Brookline psychologist and long-hauler. “For all of us who have this, we each have our own doctor. There’s no COVID doctor we can go to.”
Even the patients themselves may not recognize the source of their difficulties. “I know people who got COVID, recovered, and had a relapse. They didn’t realize it could still be COVID,” Berz said.
In July, the US Centers for Disease Control and Prevention reported that 35 percent of symptomatic COVID-19 patients said in a survey that they had not returned to their “usual state of health” two to three weeks after infection, including one-fifth of those ages 18 to 34 with no chronic illnesses.
Much less is known about what happens months after infection.
But there are many stories.
Nicole Ricker is starting to recover from the diarrhea, acid reflux, cough, body aches, and fevers that she had endured for weeks. But now, she’s confronting a puzzling new symptom: numbness on the right side of her body, particularly in her heel. Ricker, who is 34 and lives in Fall River, wants to return to work as an activities assistant at a nursing home, but isn’t sure she can be on her feet for eight hours.
In contrast, 75-year-old David Rose of Lexington had a mild case of COVID-19, just a fever for 10 days in March, plus fatigue. “I never felt in danger,” he said.
Months later, though, he’s still tired.
Although he has retired from his work as director of a nonprofit, he continues to write papers and give talks. But these days he feels less sharp. In one recent talk, Rose found himself barely able to keep going, instead of eagerly trying to engage people as he normally would.
Recently he had a pacemaker installed because his heart would periodically stop beating for several seconds. His cardiologist hasn’t ruled out the possibility that COVID-19, which is known to attack the heart, caused the problem.
“The thing is, nobody knows,” Rose said. “We all feel greater risk about everything.”
Some experts draw parallels between long-haulers and people suffering from myalgic encephalomyelitis/chronic fatigue syndrome, a chronic condition whose chief symptoms include extreme fatigue that gets worse after mental or physical activity, sleep difficulties, and problems with thinking and memory. ME/CFS has been known to occur after a viral infection, and many long-haulers describe similar symptoms.
But Dr. Zijian Chen, an endocrinologist who is medical director of the Mount Sinai Center for Post-COVID Care in New York City, said the convergence of so many different symptoms makes COVID-19 “very, very different from anything that we’ve seen before. … Every day we see a patient it seems like we’re looking at something new.”
The Mount Sinai clinic, which opened in May and has seen about 300 patients, was the nation’s first clinic devoted to long-haulers.
Some patients, Chen said, have evidence of physical damage to an organ such as the lungs or heart that explains their symptoms. For others, pulmonary function tests, echocardiograms, or CT scans find nothing amiss. “Those patients are puzzling, but they have very real symptoms,” he said.
One hypothesis holds that “a continually activated immune system” is producing the symptoms, but “there’s no good way to test that theory,” Chen said. Another theory posits that the virus attacked the autonomic nervous system, which controls involuntary functions like breathing and heart rate.
Dr. Richard Schwartzstein, chief of the Division of Pulmonary, Critical Care and Sleep Medicine at Beth Israel Deaconess Medical Center, said he’s seen about a dozen patients with prolonged COVID-19 symptoms, mostly fatigue. Some patients, he said, may be out of shape from prolonged inactivity while sick. And others may be drained by stress of the pandemic. “Their world has been thrown upside down,” he said. “For those people who have been sick, their ability to recover emotionally is not as readily done.”
At the Cambridge Health Alliance, providers at a clinic for COVID-19 patients found that a few complained of persistent symptoms eight to 10 weeks after getting infected. But as the virus has waned in the region, such patients have stopped coming in, said Neha Sandeep, a physician assistant at the clinic. She believes they recovered, but acknowledges some may have simply adjusted to a new normal.
Berz, the Brookline psychologist, has been active in patient groups, and said she hasn’t heard of anyone getting better.
“That’s the hardest part. I don’t know if this will ever change,” she said. “I don’t know if I’m ever going to be well.”
Felice J. Freyer can be reached at email@example.com. Follow her on Twitter @felicejfreyer.