Before she contracted COVID-19, Marjorie Roberts was known to friends and family as a person who always smiles.
On the morning of March 26, 2020, she was walking to her mailbox when she suddenly lost her balance and stumbled. She doesn’t think much about it at the moment, but later that day she described feeling as if “someone had [taken] vacuum cleaner and suck life out of [her]”At 61, she has never felt sicker in her life – she could not eat or sleep, suffered from severe diarrhea and nightmares and struggled to breathe. From now on, she says, her life is no longer the same.
Now, in 2022, her situation is only gloomier. She has spots on her liver, sarcoidosis in her lungs and swollen lymph nodes. She also developed a dry mouth so severe that “it felt like someone was putting cotton in my mouth,” as well as a terrible bad breath. By the time he got to the dentist, seven teeth had to come out.
“I’ve always been the person who smiles, but now that I’m smiling, the whole bottom of my mouth is gone,” she said. “Even if I wanted to take off my mask, I won’t take it off because COVID took my smile.
Pamela Bishop was a healthy, active, career-oriented professor at the University of Tennessee who had just started her own research center before encountering COVID-19 in December 2020. For the next three weeks, she said she “thought [she] she would die every day. ”She suffers from hallucinations, severe insomnia and excruciating pain.
Bishop eventually recovered and returned to work in January 2021, but she soon began to experience episodes of fatigue, brain fog, and nausea that forced her to lie down between meetings. The frequency of the episodes increased until she realized she was more horizontal than upright.
“I sat down to dinner with my husband [in March 2021] when I told him I didn’t think I was getting better. I was hurt – something was wrong with me, “she says.” This started the search to figure out what to do next. “
Frank Ziegler went for long walks several times a week before January 14, 2021, when he thought he had developed a sinus infection. With a long history of this, he recognized the familiar pressure, stuffed ears and drainage. But when he lost his sense of smell and tested positive for his COVID-19 PCR test, he realized it was not a typical infection. Two months later, he began to notice trembling hands, cognitive problems, shortness of breath and weight loss.
“Before Covid, I was very active and in good shape,” he said. “Now just climbing the stairs leaves me breathless.”
Millions of those who have recovered from COVID-19 now experience a long series of often debilitating symptoms that last for weeks, months, or even two years or more after the initial infection. As these long-distance travelers, most of whom are women, seek answers to their devastating and mysterious condition, many are also facing dismissal from healthcare providers. Researchers from Yale Akiko Iwasaki, Ph.D. Sterling Professor of Immunobiology and Molecular, Cellular, Developmental Biology, Professor of Epidemiology (Microbial Diseases) and Dermatology and Researcher at the Howard Hughes Medical Institute (HHMI); and Harlan Krumholtz, MD, Harold H. Hines, Jr. Professor of Medicine (Cardiology) and Professor at the Institute for Social and Political Studies, Investigative Medicine and Public Health (Health Policy), seek to solve the mysteries of COVID for a long time and provide a compassionate voice for those who feel isolated and ignored by the medical community.
“There are many people who have been infected with COVID who suffer from an unusual set of symptoms, and yet we have not been able to identify an approach that reflects their altered physiology,” Krumholtz said. “However, their stories and experiences can help unlock what this is, and if we work together, we can make progress in alleviating their suffering.”
The Centers for Disease Control and Prevention (CDC) identifies long-term COVID as symptoms that persist for more than four weeks after initial exposure to the virus, although Iwazaki says there is still no universal definition among scientists. Symptoms are highly variable, with long-haul carriers reporting more than 200 different symptoms. Common complaints include brain fog, shortness of breath, fatigue, difficulty concentrating, insomnia, tremor, gastrointestinal problems, palpitations, and high and low blood pressure.
Symptoms of COVID-19 persist in approximately half to 75% of patients who have experienced severe cases requiring hospitalization. But even among those who have experienced mild or asymptomatic infections, many report developing persistent symptoms in the first two to three months after the first exposure. Although there is still no solid epidemiological evidence of long-term COVID, Iwazaki estimates that between 10 and 30 percent of acute COVID-19 survivors develop the condition.
“Some people have mild cases of prolonged COVID, but a significant number of people are disabled as a result,” Iwasaki said. “They suffer from financial difficulties because they can no longer work, as well as from the social and emotional impact of not being able to function in society.”
“One thing that’s clear when I hear patient stories is that a lot of people who used to be extremely active and healthy have been driven to a life where they can do very little,” Krumholtz said. “Someone just wrote to me today, saying, ‘A lot of us [long haulers] I wish COVID had killed us “because their lives were so devastatingly affected”.
The reasons for prolonged COVID are still unknown, but Iwasaki has several hypotheses. First, retained viral residues can stimulate chronic inflammation. SARS-CoV-2 infection can also trigger an autoimmune response in the body that leads to persistent symptoms. Long-term COVID may be the result of a latent virus such as Epstein-Barr virus – the pathogen that causes mononucleosis – reactivated after infection with COVID-19. Tissue damage caused by an infection that the body fails to repair properly may also be the culprit. These hypotheses, Iwasaki says, are not mutually exclusive, and many long-haul carriers may suffer from a combination of these results.
When Frank Ziegler began experiencing mysterious symptoms two months after contracting COVID-19, he called his primary care provider (PCP). At the time, “long COVID” was just becoming a term, and he still didn’t know what it was. He wondered if he was the only person in the world to have this happen to him.
“My PCP actually stroked my head and told me to go on my way,” he says. “I’ve only seen him because of sinus infections over the years – he knew I wasn’t a hypochondriac.
Many long-term patients with COVID, says Krumholtz, find themselves in a similar position to Ziegler’s.
“There are no textbooks, no experts, no tests and treatments,” Krumholtz said. “It makes it very difficult for patients and they are often fired.”
In his lab, Iwazaki studied the sex differences in the immune responses of people who develop long-term COVID. She found that of those who initially had a mild or asymptomatic infection that later developed into prolonged COVID, the majority were women between the ages of 20 and 60. Historically, medical conditions that mainly affect women tend to be insufficiently studied and ignored by the medical community, and this bias, she said, can still affect attitudes when it comes to long-term research and treatment of COVID.
“It took a long time for medical researchers to understand that this is a real disease,” Iwazaki said. “In the early days of the pandemic, women – as well as some men – were almost rejected by their doctors, and some believed that everything was psychosomatic. And there are still doctors who believe that. “
Marjorie Roberts and Pamela Bishop recall the disappointment they felt when health care providers wrote off their disabling symptoms as a mere concern.
“My doctor told me that I was just mimicking what I saw on TV, and that if I wanted to get better, I had to watch lifelong movies and make puzzles,” Roberts said.
Bishop says she was also offered an antidepressant as the only way to treat the set of symptoms she was experiencing. When she later asked her provider to see a specialist to treat tinnitus, muscle cramps, fatigue, nausea and other symptoms, she was again forced to take an antidepressant. She was not offered any other options.
“The fatigue you get from prolonged COVID is not normal, and I knew it wasn’t just anxiety,” she said. She now attends a support group for long-haul carriers at Vanderbilt University, led by Professor Vanderbilt and longtime Covid researcher James Jackson, PsyD, where 95 percent of the members are women. Bishop says many women also share similar stories about gaslighting or lack of awareness among medical professionals. “When doctors tell you that nothing is wrong with you, you lose hope. It’s dangerous.”
Frank Ziegler first came across Krumholtz after a friend sent him a Washington Post article about the long COVID. He was struck by the words of a cardiologist from Yale, one of the doctors interviewed for the story, who urged providers not to rule out the condition.
“I thought there was a doctor who got this!” He understands, he listens to his patients, “says Ziegler. “It’s a miracle, I believe. I don’t believe in coincidences. “
He decided to contact us by email on Friday night, expressing his gratitude and sharing his own story. He did not expect to hear an answer, but to his surprise Krumholtz answered only two days later.
“I’m not his patient, I’m just someone from Nashville sending an email,” he said.
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