Patients at the 64 clinics are men and women of all ages. Some had to be hospitalized with Covid-19, while many others never became that sick during their acute infection.
The majority are coping with a wide range of lingering symptoms, including life-altering fatigue, ongoing shortness of breath, headaches, even hair loss.
NIH researchers hope to provide answers now that Congress has approved $1.15 billion to study long-term symptoms of Covid-19.
If even 1 percent of them have chronic, long-term consequences, that’s a whole lot of people. We need to find out everything we can about how to help them.
“28 million people in the United States have had Covid,” said the NIH’s director, Dr. Francis Collins. “If even 1 percent of them have chronic, long-term consequences, that’s a whole lot of people. We need to find out everything we can about how to help them.”
Help will take time. While the NIH combs through electronic health records, large data banks and collects specimens from patients, for people coping with persistent symptoms now, it’s up to hospital systems and doctors to find relief for them.
‘Staring at the walls’
Rory Martinson, 57, of Lakeville, Minnesota, is one of those patients. Diagnosed with Covid-19 in November, Martinson has been a patient at the Covid Activity Rehabilitation Program at the Mayo Clinic in Rochester, Minnesota, since early December.
Martinson was on a hunting trip, in a tree, 12 feet off the ground, when he started feeling sick. Staying in a family cabin with a teenage nephew in Park Rapids, Minnesota, Martinson spent nights sweating through fevers and the days trying to stay alert.
“I was worried I was going to fall out of the tree stand,” Martinson said.
Martinson’s temperature soared to 103 degrees. Upon his return home, his family insisted that he see a doctor. Martinson spent the next 16 days in the hospital, barely able to breathe on his own.
Nearly four months later, Martinson has no detectable virus in his system. But he still gets winded easily. To increase his blood oxygen levels, his rehabilitation at the Mayo Clinic has included breathing exercises, light cardio and weightlifting.
He’s also learning how to do household chores, like vacuuming, in ways that use less energy. Instead of standing in one spot and moving the vacuum with his arms and his upper body, Martinson now operates the vacuum in a way that resembles mowing the lawn.
“You burn a lot more energy using your upper body than you do your lower body,” Martinson said. His endurance is building back up, albeit very slowly.
“If I wouldn’t have found this program,” Martinson said, “I know I would still be sitting at home staring at the walls thinking, ‘Why am I not getting better?'”
‘No magic medication’
NBC News found that there is no medical standard of treatment for post-Covid-19 patients. Therapies vary from traditional physical therapy to medications to mindfulness. Some patients have improved; many others haven’t.
“It’s very hard,” said Dr. Cyrilyn Walters, medical director of ambulatory services at Regional One Health in Memphis, Tennessee, “because there’s not a lot of data.” Her team, which partnered with the University of Tennessee Health Science Center, works with each patient to rule out conditions unrelated to Covid-19 that could be causing a patient’s symptoms. Otherwise, she said, “there is no magic medication.”
Dr. Rebecca Keith, an associate professor of pulmonary and critical care medicine at National Jewish Health in Denver, is a co-director of the facility’s post-Covid-19 clinic. The facility puts together a “unique care plan” for every patient, she said. Some may need help with breathing. Others have problems with racing hearts. Many complain of constant stomach illness.
“It takes a multidisciplinary approach to try to help people,” she said. “Hopefully, as time goes on, science will catch up and we’ll have more to offer.”
Dr. Carla Sevin, director of the ICU Recovery Center at Vanderbilt University Medical Center in Nashville, Tennessee, said: “If you still need oxygen, you probably need a pulmonologist. If you have heart issues, you probably need a cardiologist. But for some of these other symptoms, it’s not really clear who the best person is to see you.
Because Covid is basically a new disease, we know nothing about the natural history or the recovery or the long-term implications.
“Because Covid is basically a new disease, we know nothing about the natural history or the recovery or the long-term implications,” Sevin told NBC News.
Often, the only real options for clinicians are to work with patients on the basics of a healthy lifestyle, including sleep, diet and exercise.
Adding to the difficulty, many clinic appointments are telehealth only because of the pandemic.
To help with brain fog, a commonly reported symptom, the Post Covid Recovery Team at Family Health West in Fruita, Colorado, uses speech therapists to help patients find the right words while speaking.
For people with ongoing headaches, Dr. Ellen Price at Family Health West uses Botox injections, massage and acupuncture.
At the post-Covid-19 clinic at University Hospital of Brooklyn SUNY Downstate in New York City patients with ongoing shortness of breath are given typical medications, such as inhaled or oral allergy drugs.
Surprisingly, some get relief from eating oranges.
While there is no research suggesting the citrus fruit helps treat long-lasting Covid-19 symptoms, Dr. Mafuzur Rahman suggests a benefit from vitamin C or that the juice helps clear congestion.
“Since there are no contra-indications to eating oranges for most patients, I recommend it,” Rahman, vice chair of medicine at SUNY Downstate, wrote in an email.
Most long-haul patients seeking treatment at UT Southwestern Medical Center in Dallas benefit from physical therapy to help with breathing, as well as emotional support and counseling, a spokesperson said.
A picture slowly coming into focus
Research into long-haulers has been painfully slow, patients say.
Part of that is simply because for much of the past year, hospitals have been singularly focused on treating the severely ill Covid-19 patients filling up their intensive care units.
“We understand that the medical community is completely and totally overwhelmed,” said Amy Watson, 48, of Portland, Oregon. “But we’ve been awfully patient out here for a year now.”
It was Watson, a preschool teacher, who came up with the name “long-haulers.” She remembers sitting in her living room weeks after her Covid-19 diagnosis, unable to shake symptoms, including fever and extreme exhaustion.
That was nearly one year ago.
As an increasing number of patients seek help, a clearer picture of typical long-haulers is emerging. Many are otherwise healthy adults in the prime of their lives with careers and families.
Patients report brain fog, an inability to multitask, trouble breathing, gastrointestinal problems, such as diarrhea, as well as profound fatigue.
“Patients are reporting that they need about a four- to five-hour nap after doing something as simple as taking their laundry up a flight of steps or taking out the trash,” said Dr. Greg Vanichkachorn, an occupational medicine specialist at the Mayo Clinic. “It can be quite severe and debilitating.”
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From once being able to play with their kids or run around, “now they can barely get up, take a shower and pick something to eat without feeling incredibly fatigued,” said Walters, of Regional One Health in Memphis.
Long-haulers appear to have a problem with the autonomic nervous system, which controls things the body does automatically, without thinking, such as blood vessel constriction, said Vanichkachorn, who’s involved with Martinson’s treatment. That may help explain why some patients have trouble with irregular heart rhythms or experience sudden changes in blood pressure.
How do you treat a disease you can’t define?
Despite some similarities among long-haulers — often women in their 30s, 40s and 50s — there is no consensus on how to diagnose patients. Not all patients have specific lung imaging that would suggest post-Covid-19 illness, for example.
“The lungs aren’t even all wrecked in the same way,” said Vanderbilt’s Sevin. “There are a bunch of different patterns.”
Clinics also vary in determining who is eligible for treatment. Asking for a positive test result may not be possible: Many long-haulers became infected before widespread testing was available. Some clinics require patients to have had symptoms for a certain time period, from a few weeks to a few months.
Dr. Sarah Jolley, a pulmonary and critical care specialist at UCHealth University of Colorado Hospital in Aurora, called for the medical community to create standardized definitions and guidelines of care.
Learning from other long-term illnesses
Often, clinicians are relying on their experience treating other long-term illnesses.
It’s long been known that patients hospitalized for extended periods in intensive care units can develop cognitive impairment and muscle weakness — usually because of strong sedatives. Recovery and rehabilitation can take six months or longer.
Those who specialize in post-intensive care syndrome are pivoting to help those with long-lasting Covid-19.
Plans for a post-ICU clinic at the UCHealth hospital in Aurora were already in place when the pandemic began, Jolley said. Covid-19 “really accelerated the creation of the clinic, because we anticipated that there would be a large number of ICU patients who needed ongoing care.”
The clinic evolved to include post-Covid-19 patients “across the spectrum of illness,” Jolley said, including long-haulers.
Clinicians are also taking cues from what’s known about other, similar long-lasting illnesses, such as chronic fatigue syndrome and fibromyalgia.
Many of these patients throughout the history of medicine had been marginalized, just because it was a very fuzzy type of diagnosis.
“Many of these patients throughout the history of medicine had been marginalized, just because it was a very fuzzy type of diagnosis,” said Vanichkachorn of the Mayo Clinic.
The rapid rise in the number of long-haul patients may spur research for those conditions, as well.
“Research teams are being built to understand what’s going on at the chemical level” of those conditions, Vanichkachorn said.
A sense of abandonment
Patients often arrive at the clinics after being turned away by other providers who either dismissed their illness as “all in their head” or could offer no help. The emotional fallout leads to guilt and self-doubt.
“The one universal thing that I’ve seen across all patients with post-Covid syndrome is, unfortunately, a sense of abandonment,” Vanichkachorn said. “Patients often wonder: ‘Why am I different from everyone else? Does this syndrome say something about my character or about my constitution or toughness?'”
Patients who were physically fit before Covid-19 infection — special operations military personnel, airline pilots and runners — tend to have more severe long-term symptoms, another mystery of the disease. Up to 30 percent of long-haulers are so debilitated that they have been forced to quit work, according to the Mayo clinic’s estimates.
Watson, a marathon runner, is among the patients who never returned to work. She can barely walk a mile without getting winded.
“I want so badly to have the quality of life that I had before,” Watson said. “No one wants this to be real life.”