Nov. 12, 2021 -- In late April 2020, about 6 weeks after the pandemic was declared, physical therapist David Putrino was in a weekly meeting with other staff at Mount Sinai Health System in New York City to assess their COVID-19 patients' progress.
"One of the clinical staff mentioned that they were concerned about a patient that was lingering on the [COVID] program and still not doing well with fatigue, a high heart rate, and cognition issues,'' says Putrino, PhD, director of rehabilitation innovation for the health system. "Then, a bunch of other clinicians chimed in on the same call, that they had a patient just like that."
A search of the health system revealed a trend.
Other health care professionals around the country who were caring for COVID-19 patients were seeing similar cases. Although many patients who caught the virus recovered and went back to their regular routines relatively quickly, others had fatigue, shortness of breath, headaches, and other health problems for several weeks or even months. Some couldn’t work, care for their families, or even complete a routine errand. It was happening among patients who had had a severe case as well as those who had had a mild one.
Now, experts estimate that from 10% to 30% of infected survivors may get this condition, called long-haul COVID-19. It is diagnosed when signs and symptoms of COVID that can't be explained by other causes are present at least 4 weeks after the initial infection.
It's also called post-acute sequalae of SARS-CoV-2 infection (PASC).
"We are closing in on potentially 14 million people" with long-haul COVID-19, says Steven Flanagan, MD, chair of rehabilitation medicine at NYU Langone Health in New York City.
Some experts warn that it is ''our next public health disaster in the making."
Awaiting the ‘Aha’ Moment
Although some treatments for acute COVID have proved noteworthy, such as monoclonal antibody therapy, ''in long COVID, we haven’t had any of those 'aha' moments yet," says Kathleen Bell, MD, a professor and chair of physical medicine and rehabilitation at UT Southwestern Medical Center in Dallas. She and other experts agree there are still more questions than answers about long-haul COVID-19.
Even some doctors still don't take the complaints of long-haul patients seriously. Denise Crean, 55, a former preschool special education teacher in Farmingville, NY, got COVID-19 in April of 2021 -- despite being double-vaccinated -- and still has fatigue so debilitating, she has to rest after a single trip up her stairs at home.
"I actually had a doctor tell me, 'I have patients with fatigue who still go to work,' '' she says.
Progress has been made. At least 44 post-COVID clinics are operating at hospitals and health systems across the country, providing care from a variety of specialists for patients with the condition. Research is ramping up, and long-haul COVID-19 is now considered a disability under the Americans With Disabilities Act.
No ‘Profile’ of Long-Haulers
Experts can't provide an exact profile of long-haulers other than symptoms that last beyond the normal recovery time.
"The vast majority have not come from the ICU," Bell says of the 650 patients treated so far at the University of Texas Southwestern post-COVID-19 clinic, called COVID Recover. The disability level varies, too.
"Probably 10% of all those who have it are really, really struggling," she says. "We don't know why they are different."
Caitlin Barber, of Saugerties, NY, a 28-year-old registered dietitian and former half-marathon runner, is in that 10% category. After her diagnosis in April 2020, she needed a wheelchair.
"By September, I could not stand or walk or my own,” she says. Her condition has now improved, and she is back at work. "But I don’t have much of a life besides work."
"You can predict who is more likely to get ill [with COVID-19] initially, but in terms of recovery, there are really not predictors," Bell says.
Although children can be affected, ''it's still exceedingly rare overall, compared to how frequently it affects adults," says Thomas Gut, DO, director of the Post-COVID Recovery Center and associate chair of medicine at Staten Island University Hospital in New York City.
"We've seen less than two dozen pediatric cases, versus about 1,600 adult cases," Putrino says. As to why, ''our best hypothesis is that kids tend to have much milder cases of COVID than adults, so there is less inflammation, scarring, or clotting phenomena occurring," Gut says.
"We are seeing more women than men," says Lekshmi Santhosh, MD, founder and medical director of the long COVID OPTIMAL Clinic at the University of California, San Francisco, and an assistant professor of pulmonary and critical care medicine there.
More than 400 patients have been treated at the clinic, and one thing is clear, Santhosh says: "There is no one single long-COVID experience."
Surveys of Symptoms
In some research, long-haulers have reported more than 200 symptoms. But other surveys and doctors who treat the patients said the list of common symptoms is generally shorter.
In a survey of 156 Mount Sinai patients who responded 82 to 457 days after their COVID-19 infection, fatigue was reported by 82%, brain fog by 67%, and headache by 60%. Physical exertion was most likely to make symptoms worse, as reported by 86%. Stress and dehydration also worsened symptoms. And 63% reported at least mild cognitive impairment. Respondents also reported anxiety and depression.
Test results don't always match up with symptoms.
"We see patients all the time who complain of shortness of breath, but in fact their lungs are fine, their CT imaging is fine, yet they still have shortness of breath," Bell says.
One possibility, she says, is that ''there might be issues with the skeletal muscles in their chest walls. That still remains to be proven, as does most everything about this." Another possibility is that the persistent symptoms may be due to an autoimmune reaction triggered by the viral infection, Putrino says.
Besides the physical symptoms, the condition also causes ''a real sense of isolation," says Grant Mitchell, MD, site chair of the Department of Psychiatry at Mount Sinai Beth Israel in New York City. He oversees a virtual support group that typically has six to eight people attending.
"Being in the group and hearing from people with the same symptoms make people think they are not alone and it's not just a psychological problem," he says.
Participants can trade ways they’ve talked with a family member or with someone who doesn't believe they are really sick. One disturbing finding, Mitchell says, is that ''we are seeing a significant number of patients who report having suicidal thoughts," which he says warrants serious study.
Breakthrough Patients and Long Haul?
Another surprise: Some fully vaccinated patients have gotten long-haul COVID. Crean, the preschool teacher, thought she had a bad sinus infection about 3 weeks after she had gotten her second vaccine dose. "School [officials] said, 'Go get tested,' '' she says. The positive test result was a shock.
In fully vaccinated people, the risk of getting long COVID is "nearly halved," compared to the unvaccinated, according to a recent study. Vaccinated people reported nearly all symptoms less often than infected unvaccinated people, and they were more likely to have no symptoms.
Under its initial guidance on post-COVID conditions, the CDC says the lack of evidence from lab tests or imaging does not mean long COVID isn’t real.
The CDC suggests a symptom-specific approach, such as treating headaches and other debilitating symptoms.
Some doctors say they have borrowed from the treatment approach for chronic fatigue syndrome.
"What we have learned from the CFS literature is [to recommend] activity tailored to a personalized approach and what they are able to tolerate," says Sritha Rajupet, MD, primary care lead for the Post-COVID Clinic at Stony Brook University's Renaissance School of Medicine in New York. Besides identifying and treating specific symptoms, she encourages patients to pace themselves.
Lifestyle improvement, such as getting exercise and eating a balanced diet, can pay off, too, she says. It can be hard to do, she acknowledges, when energy is low.
Listening to patients is crucial, Rajupet says. "Many who come to our Post-COVID Clinic have struggled to get their concerns heard."
It's also important to evaluate new symptoms in a long-haul patient, says Santhosh, of UCSF, who has found cases of metastatic cancer, inflammatory bowel disease, and other disorders when the patient or doctor assumed it was a post-COVID symptom.
It Likely Will Get Better ... Eventually
If there is any good news, it's that ''it generally is a self-resolving syndrome," Gut says. "It does typically resolve within 3 to 6 months, although some will have lingering symptoms up to a year out, especially in the neurological and cognitive realms, the insomnia and fatigue and brain fog."
Bell agrees: "The majority of people are getting better, but it can take a substantial amount of time."
Receiving care at a specialized center may speed up recovery.
"Currently, our data would support the idea that once [patients are] receiving skilled care, we can help to significantly resolve symptoms within 3 months," Putrino says.
In general, he says, ''90 to 100 days of rehabilitation will get patients to a point where they can independently manage their condition."
The team includes, as needed, pulmonologists, cardiologists, occupational and physical therapists, nephrologists, neurologists, behavioral health experts, and social workers.
Ongoing National Efforts
In September, the National Institutes of Health awarded nearly $470 million for the RECOVER (Researching COVID to Enhance Recovery) Initiative to find out why some have prolonged symptoms or get new ones after the original infection eases.
Researchers at New York University's Langone Health received the parent award and are dispensing sub-awards to more than 100 researchers at more than 30 institutions.
Recognition of the seriousness of long-haul COVID is the first step, says Flanagan, of NYU Langone Health.
Long-Haul as a Disability
Even though long COVID is defined as disability under the Americans With Disabilities Act, collecting benefits is not a given.
"Doctors can give patients a letter saying you believe they have it," Rajupet says, "but that doesn't guarantee they will qualify."
In her clinic, where more than 500 long haulers have been treated, only a handful needed long-term disability. In her experience, patients say getting disability benefits proves more difficult than getting insurance reimbursement.
A Social Security Administration spokesperson says that to be eligible for a disability program, "a person must have a medical condition that lasted or is expected to last at least 1 year or result in death."
According to Social Security, the agency has received applications from about 16,000 long-haul COVID patients since December who provided medical evidence of their condition. It's unknown how many have been approved.
From 2009 to 2018, the agency turned down 66% of disability insurance applications, on average.
Long-Haul COVID: Real-Life Issues
Adjusting to a new normal is crucial, say those still struggling with long COVID. Before her diagnosis, Crean was on her feet 8 hours a day with her preschool students.
"I'd go home, cook and clean up, and throw in a load of laundry," she says. "My body just doesn’t have the energy to perform the things I need to do."
Recently, she went to the store to pick up one item -- and that was all she could handle. After losing her job, Crean and her husband switched to his insurance plan, which she says isn't as good as hers had been. She had to stop physical therapy because of the $75 copay. She's on a wait list for a tai chi class and knows movement will help.
A post-COVID support group at Stony Brook Medicine, where she receives care, has been her lifeline.
"It's been a godsend to help me believe I am sane," she says. “The people there get it.”
Barber also finds support helpful in seeking out a therapist and finding information from Survivor Corps, a grassroots movement that advocates for research and provides support. Besides the immediate battles, Barber had to adjust to long-haul COVID derailing life plans for her and her husband.
"We would love to buy a house," she says, but it's not happening now, with unpaid therapy bills piling up.
Her former self-image, as a fit half-marathoner, has changed, too.
"I can barely walk a mile now," she says.
But she stays hopeful.
"Mount Sinai [health care workers] have said multiple times they think I will make a full recovery. They said it could take 3 years, but I am inspired by that."
A Recovered Long-Hauler Looks Back
Arianna Varas, 36, of New York City, considers herself fully recovered from long-haul COVID. She's working again as an executive assistant for a software company. "Most of the symptoms that I had even 6, 8 months ago are pretty settled. Everything is pretty much back to normal," she says.
But the recovery was grueling. Before her recovery, she had spent time in the ICU, was undergoing mechanical ventilation for a week, was in a nursing home for a month, and then joined the post-COVID recovery program at Mount Sinai, where she received care for months.
She is fully vaccinated now but does worry about getting COVID again. "It is in the back of my head," she says.
For others dealing with long-haul COVID-19, Varas advises: "You have to be patient with yourself and with your medical team. If you are not, it is going to make you feel worse than what you are probably feeling."
A support system -- even if it's just one person -- is crucial, she says. "Speak to someone at some point about how you are feeling.''
Most important? Focus on the positive and on the future. "It will get better," Varas says. "I know it sounds cliché, but over time, you will start feeling like yourself again. You will make it."