Long-haul Covid: clinics are opening up across the country

Over 100 symptoms reported

The over 100 symptoms reported by patients include fatigue, headaches, brain fog and memory loss, gastrointestinal issues, muscle pain, and heart palpitations. Some have even developed diabetes.

“I am so amazed at what is happening on a daily basis,” said Dayna McCarthy, who deals with Covid long haul at Mount Sinai in New York City. She hears a long list of symptoms, including brain fog, rapid heart rates, and irregular blood pressure.

Mount Sinai was the first in the country to open a clinic for long-haul Covid when it launched its post-COVID care center in May.

The center has seen over 1,600 patients, and there are months of waiting for appointments because the demand is so high.

The Piedmont Lung COVID Recovery Clinic in Atlanta opened in November and has already received around 600 referrals, said Dr. Jermaine Jackson, the medical director.

“We are learning more and more about this virus every day,” he says. “I like to say that we build the plane while we fly it, or put the wheels on while we drive the car.

It’s not just people who are seriously ill and hospitalized with the virus who are still suffering months after becoming ill.

“New or prolonged symptoms can occur beyond four to six months in patients with Covid-19, regardless of the severity of the acute infection with SARS-CoV-2,” said Alfonso Hernandez-Romieu from the CDC during a webinar for physicians in January.

Doctors and therapists say they treat people of all ages and people who were very healthy before they had Covid – including marathoners, athletes and coaches.

A second health crisis in the making?

Most of those followed – 150 out of 177 – had “mild” illness and had not been hospitalized.

Regardless of the final percentage that turns out to be long-term, the sheer number of long haul could spell a second health crisis, health experts say.

With more than 110 million cases worldwide – and over 28 million in the United States – “this could potentially be a second pandemic to come, born out of the first crisis,” Li said.

Researchers in the nine-month follow-up study wrote that “even a low incidence of long-term disability could have enormous health and economic consequences.”

Treat the symptoms

Currently, there is no specific treatment for Covid long. For now, doctors are focusing on treatment based on symptoms reported by a particular patient, especially because patients have varying symptoms.

Doctors treat long-haul symptoms, giving them diagnoses that match the signs, such as encephalomyelitis / chronic fatigue syndrome (ME / CFS) for one of the most common conditions, debilitating fatigue.

The Atlanta clinic refers patients who have symptoms outside of their specialty to other specialists, said Jackson, a pulmonologist.

It is “an evolutionary process,” he said.

At least doctors now know Covid is a real thing. Some patients, like Janet Kilkenny, say they have had doctors who simply dismissed their symptoms and didn’t really believe what they were saying in the early months of the pandemic.

Kilkenny, 62, was working as an occupational therapist at a nursing home when she contracted the virus in April. Although she was not hospitalized, she was short of breath months later and unable to work a full week.

“I would take some free time, at least one day a week, and literally come home from work and lay on the couch crying,” she says.

Scans in June showed she had scarred lungs that were partially collapsed, she said, and a cardiologist found fluid around her heart.

In July, Kilkenny said she took short-term disability leave. She hasn’t worked since. She and her husband sold their house and moved in with their daughter.

Find help in online groups

Some patients say the long Covid care centers and the doctors they’ve seen haven’t really helped.

“For the most part, primary care physicians, cardiologists, neurologists, and even the covid recovery clinics set up in major medical centers have not been helpful to me other than helping to rule out organ damage or being easily tested for conditions, ”Christine Jamieson told CNN in an email.

She was diagnosed with Covid-19 at the end of June.

“Eight months later, I am still unable to return to work and have spent very few days without severe fatigue,” Jamieson said. “I have over 30 symptoms in several bodily systems that make everyday life almost impossible. I have seen over 20 doctors, undergone hundreds of lab and other medical tests, and tried over 50 medications.

Yet, she says, she has an “amazing care team.”

“I am fortunate to have the resources to see one of the very few EM / CFS specialists in the United States,” Jamieson said. “I also see an incredible speech-language pathologist who helps me navigate my life with my cognitive challenges,” a common long-haul problem that the therapist compared to concussion patients, Jamieson said.

Berrent herself suffered from a long Covid, having a “complete symptomatic relapse over the summer”, and has been to the Mount Sinai COVID care center and to gastrointestinal doctors and “all kinds of neurologists Because of terrible headaches and deep pain in the inner ear.

Groups such as Survivor Corps are not only beneficial for long haulers, but also for researchers and doctors who listen to their members, Li said.

Li met Berrent while they were both guests on CNN’s “Cuomo Prime Time”, and the two began to exchange notes. Berrent told him what his group saw among the survivors of the Survivor Corps and shared the research they were doing.

Li joined the Survivor Corps Medical Advisory Board “because I wanted to understand this more.”

“For one of the first time in the history of medicine, patients present their symptoms of a new disease to doctors to teach them what is really going on with a new disease,” Li said.

“And that’s really important in today’s connected digital world, where patients can come together, organize themselves, and then present their results to doctors, and then doctors can kind of come back to the tools in our box. tools.