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 so ill during their acute infection.
The majority deal with a wide range of persistent symptoms, including life fatigue, persistent 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, it’s many people. We need to find out everything we can about how to help them.
“28 million people in the United States had Covid,” said Dr. Francis Collins, director of the NIH, said. “If even 1 percent of them have long-term chronic consequences, it’s a lot of people. We need to find out everything we can about how to help them.”
Help will take time. While the NIH collects electronic health records, large databases and samples from patients, people who have persistent symptoms now need to relieve hospital systems and doctors.
‘Staring at the walls’
Rory Martinson, 57, of Lakeville, Minnesota, is one of the patients. Martinson was diagnosed with Covid-19 in November and 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 meters from the ground, when he started to feel sick. In a family hut with a teenage cousin in Park Rapids, Minnesota, Martinson sweated through fever at night and tried to stay awake.
“I was worried I would fall out of the tree stand,” Martinson said.
Martinson’s temperature rose 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 breathing on his own.
Nearly four months later, Martinson has no detectable virus in his system. But he still gets wind easily. To increase his oxygen levels in the blood, his rehabilitation at the Mayo Clinic included breathing exercises, light cardio and weightlifting.
He also learns how to do household chores, such as vacuuming, in ways that use less energy. Instead of standing in one place and moving the vacuum cleaner with his arms and torso, Martinson now works the vacuum cleaner in a way that looks like mowing the lawn.
“You burn a lot more energy with your upper body than with your lower body,” Martinson said. His endurance increases, albeit very slowly.
“If I did not find 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 has found that there is no medical standard for treatment for patients after Covid-19. Therapies range from traditional physical therapy to medication to awareness. Some patients improved; many others have not.
“It is very difficult,” said Dr. Cyrilyn Walters, medical director of ambulance services at Regional One Health in Memphis, Tennessee, said, “because there is not much data.” Her team, which works with the University of Tennessee Health Science Center, works with each patient to rule out conditions not related to Covid-19 that can cause a patient’s symptoms. Otherwise, she said, “there is no magic medicine.”
Dr. Rebecca Keith, an associate professor of medical and medical health care at National Jewish Health in Denver, is co-director of the clinic after the Covid-19 in the facility. The facility puts together a “unique care plan” for each 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 trying to help people,” she said. “Hopefully, as time goes on, science will catch up and offer us more.”
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 problems, you probably need a cardiologist. But 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 option for clinicians is to work with patients on the basics of a healthy lifestyle, including sleep, diet, and exercise.
In addition to the problem, many clinical appointments are telehealth only because of the pandemic.
To help with brain fog, a common symptom, the Post Covid Recovery Team at Family Health West in Fruita, Colorado, uses speech therapists to help patients find the right words while talking.
For people with persistent headaches, use Dr. Ellen Price at Family Health West Botox injections, massage and acupuncture.
In the post-Covid-19 clinic at Brooklyn University Hospital, SUNY Downstate in New York City is giving patients with persistent shortness of breath, typical medications, such as inhaled or oral allergens.
It is surprising that some get relief from eating oranges.
Although there is no research to suggest that citrus fruits help treat the long-lasting Covid-19 symptoms, Dr. Mafuzur Rahman suggests that vitamin C has an advantage, or that the juice helps relieve congestion.
“Since for most patients there are no contraindications to eating oranges, I recommend it,” Rahman, vice president of medicine at SUNY Downstate, wrote in an email.
Most long-term patients who seek out UT Southwestern Medical Center in Dallas benefit from physiotherapy to help breathing, as well as emotional support and counseling, a spokeswoman said.
A picture that is slowly coming into focus
According to patients, long-term examinations are painfully slow.
Part of this is simply because hospitals over the past year have focused separately on treating the seriously ill Covid-19 patients who fill their intensive care units.
“We understand that the medical community is completely and utterly overwhelmed,” said Amy Watson, 48, of Portland, Oregon. “But we’ve been patient out here for a year now.”
It was Watson, a preschool teacher, who coined the name ‘long guards’. She remembers sitting in her living room weeks after her Covid-19 diagnosis and unable to shake the symptoms, including fever and extreme exhaustion.
That was almost a year ago.
As an increasing number of patients seek help, there is a clearer picture of typical long-distance guards. Many are otherwise healthy adults in the prime of their lives with careers and families.
Patients report brain fog, an inability to multitask, respiratory problems, gastrointestinal problems, such as diarrhea, as well as severe fatigue.
“Patients report that they need about an afternoon nap of four to five hours after doing something as simple as picking up their laundry in a stairwell or taking out the trash,” said Dr. Greg Vanichkachorn, a specialist in occupational medicine at the Mayo, said. Clinic. “It can be quite severe and debilitating.”
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From once being able to play or run around with their kids, “they can now barely get up, shower and choose something to eat without feeling incredibly tired,” said Walters, of Regional One Health in Memphis.
Long-term sufferers apparently have a problem with the autonomic nervous system, which automatically controls things the body does without thinking, such as the blood vessel narrowing, says Vanichkachorn, who is involved in treating Martinson. This may help explain why some patients experience problems with irregular heart rhythms or sudden changes in blood pressure.
How do you treat a disease that you cannot define?
Despite some similarities among long-term care workers – often women in their thirties, forties and fifties – there is no consensus on how to diagnose patients. Not all patients have a specific lung image that would indicate post-Covid-19, for example.
“The lungs were not even crashed in the same way,” said Vanderbilt’s Sevin. “There are a lot of different patterns.”
Clinics also differ in determining who is eligible for treatment. The demand for a positive test result may not be possible: many long-term feeders became infected before widespread tests became available. Some clinics require patients to have symptoms for a certain period of time, from a few weeks to a few months.
Dr. Sarah Jolley, a specialist in lung and critical care at UCHealth University of Colorado Hospital in Aurora, has appealed to the medical community to create standardized definitions and guidelines for care.
Learn from other long-term illnesses
Clinicians often rely on their experience in treating other long-term illnesses.
It has long been known that patients who are hospitalized in intensive care units for long periods of time can develop cognitive impairment and muscle weakness – usually due to strong sedatives. Recovery and rehabilitation can take six months or longer.
Those who specialize in post-intensive care syndrome turn to helping those with long-term Covid-19.
There were already plans for a clinic to the ICU at UCHealth Hospital in Aurora when the pandemic began, Jolley said. Covid-19 “really accelerated the creation of the clinic, because we expected that there would be a large number of ICU patients in need of ongoing care.”
The clinic was developed to include patients after Covid-19 “across the spectrum of diseases,” Jolley said, including long-distance guards.
Clinicians also take indications of what is known about other similar long-term illnesses, such as chronic fatigue syndrome and fibromyalgia.
Many of these patients were marginalized throughout the history of medicine, simply because it was a very vague kind of diagnosis.
“Many of these patients have been marginalized by the history of medicine, simply because it was a very vague kind of diagnosis,” said Vanichkachorn of the Mayo Clinic.
The rapid increase in the number of long-distance patients may also stimulate research for these conditions.
“Research teams are being built to understand what’s going on at the chemical level” of these conditions, Vanichkachorn said.
A feeling of abandonment
Patients often arrive at the clinics after being turned away by other providers who have dismissed their illness as ‘all in their head’ or could not offer any help. The emotional outburst leads to feelings of guilt and self-doubt.
“The one universal thing I have seen in all patients with post-Covid syndrome is unfortunately a feeling 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 the infection with Covid-19 – military personnel for special operations, pilots and runners – tend to have worse long-term symptoms, another mystery of the disease. According to estimates from the Mayo Clinic, up to 30 percent of the long-term care workers were so weakened that they were forced to stop working.
Watson, a marathon runner, is one of those patients who never goes to work again. She can barely walk a mile without getting windy.
“I so want the quality of life I had before,” Watson said. “Nobody wants it to be real life.”
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