Gahan, clinical psychologist in Shrewsbury, UK, couldn’t go back to work.
The disease causes what she calls “storms,” crippling periods in which she feels shortness of breath, numbness in her hands and feet, and her heart rate increases due to simple tasks. Even taking a shower is only possible during an occasional respite of symptoms.
“In May and June, I could barely speak because I was so sick,” she said.
Before contracting the disease in early April, the mother-of-two ran three times a week and followed a regular yoga routine.
“I can only walk to the corner,” he said. “In terms of running, I can̵
It is one of thousands around the world for which Covid-19 has turned into a chronic condition. Gahan and other Covid-19 “long-haul transporters” feel they are still not receiving recognition for a disease that has disabled them for months, with no end in sight.
“I’m a clinical psychologist, and that’s not anxiety,” she said. “If doctors just say ‘We don’t know’, it’s better than saying Covid symptoms only last two weeks.”
Many hospitalized for Covid-19 risk becoming “ long hauler ”
Researchers from the North Bristol NHS Trust’s Academic Respiratory Unit in the UK examined 110 patients with Covid-19, whose illnesses required hospitalization for a median of five days between March 30 and June 3.
Twelve weeks after the patients were discharged from the hospital, 74% of them reported symptoms, including dyspnea and excessive fatigue.
Despite these symptoms, however, 104 of the 110 patients in the study had normal baseline blood test results, with only 12% showing abnormal chest X-rays and 10% showing restrictive lung function through spirometry tests.
The British Medical Journal released a new guide for healthcare professionals in August on how to treat long-range Covid-19 patients, estimating that up to 10% of all people who tested positive could develop prolonged illness. The guide includes specific blood tests to be done, possibly referring patients to pulmonary rehabilitation and having them use pulse oximetry at home to measure blood oxygen saturation.
Findings like these fly in the face of a narrative that took hold at the start of the pandemic, in which many medical professionals believed that Covid-19 averaged the patient would get sick for a couple of weeks, get rid of the virus, and then be fine.
This is not the case for everyone. The BMJ guide cited “weak or absent antibody response, relapse or reinfection, inflammatory and other reactions, deconditioning, and mental factors such as post-traumatic stress” as contributing factors to long-term symptoms. He acknowledged that similar parallels had occurred in patients with SARS and MERS.
“The classic case we all have on our hands isn’t always what actually happens,” said Dr. MeiLan King Han, a pulmonologist and professor of medicine at the University of Michigan. “For the patients I have followed, many continue to complain of coughs, breathing problems and severe fatigue long after their first infection.”
Long range and lack of autonomy
One of the key issues in caring for any long-range Covid-19 patient is understanding how many of their symptoms can be attributed to the heart and lungs, and how much of the disease is actually the result of a deeper form of neurology. Coronavirus dysfunction is gone, according to Noah Greenspan, a New York-based physiotherapist and founder of the Pulmonary Wellness Foundation.
Before embarking on physical or respiratory therapy, he asks all of his patients to undergo a full examination by their doctor to rule out a heart condition, stroke, or pulmonary embolism before starting physical therapy.
Some patients’ symptoms are mild and may initiate a more traditional rehabilitation plan, he said, “but there are others, which are transforming into the larger group of people, which are these long-haul transporters.”
The main trend among the long Covid-19 transporters that Greenspan is working with is a condition called dysautonomia, a condition characterized by poor communication between the autonomic nervous system and the rest of the body.
The autonomic nervous system regulates the automatic functions of the body such as breathing, sleep and digestion. When it doesn’t work, symptoms can present themselves in a myriad of different ways, depending on the person.
“You get to a lot of symptoms and it brings out a lot of symptoms, and that’s what they have for the day,” Greenspan said. “It’s a twisted ball and takes a week to unravel a thread.”
While shortness of breath and cardiovascular problems are present in his patients, Greenspan said, these aren’t usually the most common underlying cause of their misery.
Gahan and others with long-range Covid-19 symptoms face a condition called postural orthostatic tachycardia syndrome, which refers to a sharp increase in heart rate that occurs when moving from a reclined position to a standing position. The force of gravity causes blood to accumulate in the legs. This condition can cause lightheadedness, lightheadedness, and fainting.
“Their heart rate goes up from 50 to 75 points if they get up to get water,” Greenspan said. “They have rapid heartbeats that have nothing to do with what they are actually doing, which are not commensurate with their workload.”
Many patients show neurological symptoms consistent with myalgic encephalomyelitis / chronic fatigue syndrome, according to Dr. Anthony Fauci, director of the BMJ and the National Institute of Allergy and Infectious Diseases. That diagnosis requires at least six months of symptoms, a benchmark that most hauliers have not yet reached.
For many, lung damage isn’t the biggest problem
Many patients with Covid-19 feel that the medical system is lighting them up with gas, telling them that there is nothing wrong even if their entire lives have been turned upside down by the aftermath of Covid-19.
Corey Coopersmith, a 36-year-old fitness consultant in Las Vegas, hasn’t been able to work since he first fell ill in late February. He suffers from a constant ebb and flow of symptoms, yet visit after visit to medical specialists revealed a series of “normal” laboratory tests.
“A month ago, I had a lung exam and got 120% of the gas exchange test,” Coopersmith said, noting that the doctor told him, “Your lung function is amazing.”
But a breakthrough came when he finally visited an immunologist who performed tests that indicated abnormally low function of immune cells, including T cells and B cells.
“Have you been tested for HIV?” the immunologist asked Coopersmith, he recalled. “Your blood test looks like someone about to contract AIDS.”
A mixed martial arts fighter in his 20s, Coopersmith was in excellent shape when he contracted Covid-19 in February, boasting a resting heart rate of 58 beats per minute.
But now, when he wakes up in the middle of the night to go to the bathroom, POTS can get his heart rate up to 200.
To make it possible to sleep under his new constraints, he purchased a continuous positive airway pressure machine, a device with a face mask that pushes oxygen into his lungs.
“I lie out of breath, fighting for life,” he said.
For many, lung damage isn’t the biggest problem
Coopersmith is one of many Covid survivors trying to understand why he feels so out of breath even though his lung function is excellent.
“I feel like my lungs have recovered pretty well,” said Gahan, the clinical psychologist in the UK.
His main problem was identifying what caused the disease storms, which are mainly neurological symptoms, including migraines and numbness in the feet and hands. He feels they can be explained by dysautonomia.
“I can’t help but go to bed,” she said, noting how lights, sounds and emotional stressors exacerbate her ongoing illness. “I can’t stand any interaction.”
Patients hope their stories of interrupted healings may dissuade others from taking risks with the infection by traveling, celebrating, or gathering in large groups before a vaccine is developed and distributed.
“It’s not about fatigue. These are really bad symptoms that take over your entire life for who knows how long,” Gahan said. “Think about people like me when you think about what decisions you should make.”