And almost every day that doctors work with these long-distance trucks from Covid bring new insights into the syndrome, which manifests itself in a wide range of symptoms in patients of all ages and from all pre-Covid health states.
“Now we realize that this goes far beyond the standard post-viral syndrome,” said Dr. William Li, a doctor of internal medicine and founder of the Angiogenesis Foundation, a non-profit organization that focuses on the role of blood vessels in disease.
“These symptoms can last for nine months. And we are already a year now, we are still seeing the appearance of new symptoms,” said Li, a vascular biologist who has been researching Covid for almost a year.
More than 100 reported symptoms
The more than 100 symptoms reported by patients include fatigue, headaches, brain fog and memory loss, gastrointestinal problems, muscle pain and heart palpitations. Some even developed diabetes.
“I’m very surprised by what happens every day,” said Dayna McCarthy, who handles Covid’s long haul trucks on Mount Sinai in New York. She hears a long list of symptoms, including brain fog, rapid heartbeat and irregular blood pressure.
Mount Sinai was the first in the country to open a clinic for Covid long haulers when it launched its Post-COVID Service Center in May.
The center saw more than 1,600 patients and there is a one month wait for consultations because the demand is very high.
The COVID Pulmonary Recovery Clinic in Piedmont in Atlanta opened in November and has already had about 600 referrals, said Dr. Jermaine Jackson, the medical director.
“We are learning more and more about this virus every day,” he said. “I like to say that we are building the plane while flying it, or putting the wheels on while driving.
It is not just people who were seriously ill and hospitalized with the virus who still suffer months after becoming ill.
“New or prolonged symptoms can occur beyond four to six months among patients with Covid-19, regardless of the severity of the acute SARS-CoV-2 infection,” said Alfonso Hernandez-Romieu of the CDC during a medical webinar in January.
Doctors and therapists say they are treating people of all ages and people who were extremely healthy before they acquired Covid – including marathon runners, athletes and coaches.
A second health crisis taking shape?
Most of the people followed – 150 out of 177 – had “mild” illness and had not been hospitalized.
Whatever the definitive percentage in the long run, the sheer number of long-distance trucks could spell a second health crisis, health experts say.
With more than 110 million cases worldwide – and more than 28 million in the United States – “this could potentially be a second pandemic emerging, born out of the first crisis,” said Li.
The researchers in the nine-month follow-up study wrote that “even a small incidence of long-term disability can have huge economic and health consequences”.
Treating symptoms
Currently, there is no specific treatment for long Covid. For now, doctors focus on treatment based on the symptoms reported by a particular patient, especially since patients have varying symptoms.
Doctors are treating the symptoms of long-distance travelers by providing diagnoses that match the signs, such as encephalomyelitis / chronic fatigue syndrome (EM / CFS) for one of the most common diseases, debilitating fatigue.
The Atlanta clinic forwards patients who have symptoms outside their specialty to other specialists, said Jackson, a pulmonologist.
It is “an evolutionary process,” he said.
At least doctors now know that Covid Long is a real thing. Some patients, like Janet Kilkenny, say they had doctors who simply dismissed their symptoms and didn’t really believe what they said in the first months of the pandemic.
Kilkenny, 62, worked as an occupational therapist in a nursing home when he contracted the virus in April. Although she was not hospitalized, she suffered shortness of breath months later and was unable to work for an entire week.
“I took time off, at least one day a week, and was literally coming home from work and lying on the couch crying,” she said.
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 he took short-term disability leave. She hasn’t worked since. She and her husband sold the house and moved in with their daughter.
Find support in online groups
Some patients say that the long Covid call centers and the doctors they consulted were not really beneficial.
“In most cases, primary care physicians, cardiologists, neurologists and even coveted recovery clinics installed in major medical centers have not been useful to me, other than helping to rule out organ damage or easily tested for conditions,” said Christine Jamieson CNN in an email.
She was diagnosed with Covid-19 in late June.
“Eight months later, I still can’t get back to work and I spent a few days without being too tired,” said Jamieson. “I have more than 30 symptoms in various systems of the body that make daily life almost impossible. I have consulted more than 20 doctors, done hundreds of laboratory tests and other medical tests and tried more than 50 medications.”
Still, she said, she has an “incredible care team”.
“I am fortunate to have the resources to see one of the few ME / CFS specialists in the United States,” said Jamieson. “I’m also seeing an incredible speech therapist who helps me navigate life with my cognitive challenges,” a common problem for long-haul trucks that the therapist compared to patients with concussion, said Jamieson.
Berrent herself suffered from Covid for a long time, having a “complete symptomatic relapse during the summer”, and went to the Mount Sinai COVID Service Center and gastrointestinal doctors and “all types of neurologists” because of terrible headaches and deep pains in the inner ear.
Groups like Survivor Corps are not only beneficial for long-haul trucks, but also for researchers and doctors who listen to their members, Li said.
Li met Berrent when the two were invited to CNN’s “Cuomo Prime Time”, and the two started exchanging notes. Berrent told him what his group was seeing among Survivor Corps survivors and sharing the research they were doing.
Li joined Survivor Corps’ medical advisory board “because I wanted to understand this better”.
“For the first time in medical history, patients are bringing their symptoms of a new disease to doctors to teach them what is really going on with a new disease,” said Li.
“And this is very important in today’s connected digital world, where patients can get together, organize and then present their findings to doctors, and then doctors can get back to the tools in our toolbox.”
CNN’s Nadia Kounang and Dr. Sanjay Gupte contributed to this report.