Before suffering from COVID-19, Marjorie Roberts was known to friends and family as someone who always smiled.
On the morning of March 26, 2020, he was walking toward his mailbox when he suddenly lost his balance and stumbled. At the moment, I didn’t think much of it, but later that day, he described the feeling as “someone [taken] a vacuum cleaner and sucked life [her]. ” At 61, she had never felt so ill in her life: she could not eat or sleep, she suffered from severe diarrhea and nightmares, and she struggled to breathe. From that moment on, he says, his life has not been the same.
Now, in 2022, his situation is only worse. It has developed spots on the liver, sarcoidosis in the lungs and swollen lymph nodes. He also developed such an intense dry mouth that “it looked like someone was putting cotton in my mouth,” as well as a horrible bad breath. When he got to the dentist, seven teeth had to come out.
“I was always the person who smiles, but now when I smile, the whole bottom of my mouth is gone,” he says. “Even if I wanted to take off my mask, I wouldn’t take it off, because COVID made me smile.”
Pamela Bishop was a healthy, active, career-oriented professor at the University of Tennessee who had just started her own research center before suffering from COVID-19 in December 2020. For the next three weeks, she says, “he thought [she] he would die every day. “He suffered from hallucinations, severe insomnia, and debilitating pain.
Bishop finally recovered and returned to work in January 2021, but soon began to experience episodes of fatigue, brain fog, and nausea that forced her to stretch between meetings. The episodes increased in frequency until it was realized that it was horizontal rather than raised.
“I was sitting down to dinner with my husband [in March 2021] when I told him I didn’t think he was going to get better. I was hurt, something went wrong for me, “he says.” This started the search to find out what to do next. “
Frank Ziegler used to take long walks several times a week before January 14, 2021, when he thought he had developed a sinus infection. With a long history of these, he recognized family pressure, clogged ears, and drainage. But when he lost his sense of smell and tested positive for COVID-19 PCR, he realized that it was not a typical infection. Two months later, she began to feel tremors in her hands, cognitive problems, difficulty breathing, and weight loss.
“Pre-COVID, I was very active and in good shape,” he says. “Now, just going upstairs leaves me breathless.”
Millions of people who have recovered from COVID-19 are now experiencing a long series of often debilitating symptoms that persist for weeks, months, or even two years or more after the original infection. As these long-haired carriers, most of whom are women, seek answers to their devastating and mysterious situation, many are also faced with the dismissal of their health care providers. Yale researchers Akiko Iwasaki, PhD, Sterling Professor of Immunobiology and Molecular, Cellular and Developmental Biology, Professor of Epidemiology (Microbial Disease) and Dermatology, and Researcher at the Howard Hughes Medical Institute (HHMI); and Harlan Krumholz, MD, Harold H. Hines, Jr. Professor of Medicine (Cardiology) and Professor of the Institute of Social and Political Studies, Research Medicine and Public Health (Health Policy), strive to solve the mysteries of long COVID, and provide a compassionate voice for those who feel isolated and ignored by the medical community.
“There are many people who have become infected with COVID who suffer from an extraordinary set of symptoms, and yet we have not been able to identify an approach that reflects their altered physiology,” says Krumholz. “However, their stories and experiences can help unblock what this is, and if we work together, we can move forward to alleviate their suffering.”
The Centers for Disease Control and Prevention (CDC) has long defined COVID as having symptoms that last more than four weeks after initial exposure to the virus, although according to Iwasaki, there is still no universal definition of scientists. Symptoms vary widely: long carriers have reported more than 200 different symptoms. Common complaints include brain fog, difficulty breathing, fatigue, difficulty concentrating, insomnia, tremors, gastrointestinal problems, palpitations, and high and low blood pressure.
Symptoms of COVID-19 persist in half to 75% of patients with severe cases requiring hospitalization. But even among those who experienced mild or asymptomatic infections, many report developing persistent symptoms during the first two to three months after the first exposure. Although there is still no solid epidemiological evidence for long-term COVID-19, Iwasaki estimates that between 10 and 30 percent of acute COVID-19 survivors develop the disease.
“Some people have mild cases of long COVID, but a significant number of people are disabled because of it,” Iwasaki says. “They are suffering financial hardship because they can no longer work, as well as the social and emotional impact of not being able to function in society.”
“One thing that is clear when I hear the stories of patients is that many people who were once extremely active and healthy have been relegated to a life where they can do very little,” says Krumholz. “Someone wrote to me today saying that ‘many of us [long haulers] I wish COVID had killed us because their lives have been so devastating. “
The causes of long COVID are still unknown, but Iwasaki has several hypotheses. First, persistent viral debris could be stimulating chronic inflammation. SARS-CoV-2 infection may also be triggering an autoimmune response within the body that leads to persistent symptoms. Long COVID could be the result of a latent virus such as Epstein-Barr virus, the pathogen that causes mononucleosis, which reactivates after COVID-19 infection. Infection-induced tissue damage that the body does not repair properly could also be to blame. 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 suffering from COVID-19, he called his primary care provider (PCP). At the time, “long covid” was becoming a term, and I still didn’t know what it was. He wondered if he was the only person in the world who had this happen to him.
“My PCP basically slapped me on the head and told me to go my own way,” he says. “I’ve only seen it for sinus infections over the years; I knew I wasn’t hypochondriac.”
Many long-lived COVID patients, Krumholz says, are in a similar position to Ziegler’s.
“There are no textbooks, no experts, no tests or treatments,” says Krumholz. “It makes it very difficult for patients and they are often fired.”
In her lab, Iwasaki is studying the sex differences in the immune responses of people who develop long-term COVID. Of those who initially had a mild or asymptomatic infection that later became long COVID, she is finding out, most are women between the ages of 20 and 60. Historically, medical conditions that predominantly affect women are often under-researched and ignored by the medical community, and this bias, he believes, may still affect attitudes when it comes to lengthy studies and COVID treatments.
“It took a long time for medical researchers to recognize that it was a real disease,” Iwasaki says. “In the early days of the pandemic, women, as well as some men, were virtually fired by their doctors, and some believed it was all psychosomatic. And there are still doctors who believe it.”
Marjorie Roberts and Pamela Bishop recall the frustration they felt when their health care providers described their disabling symptoms as simple anxiety.
“My doctor told me I was just imitating what I saw on TV and that if I wanted to improve, I would have to watch Lifetime movies and do puzzles,” says Roberts.
Bishop says he was also offered an antidepressant as the only option to treat the variety of symptoms he was experiencing. When she later asked her doctor to refer her to a specialist to treat her tinnitus, muscle cramps, fatigue, nausea and other symptoms, she was again pushed to take the antidepressant. They offered him no other choice.
“The fatigue you have long had with COVID is not normal, and I knew this wasn’t just anxiety,” he says. She now attends a long-haul carrier support group at Vanderbilt University, led by Vanderbilt professor and longtime Covid researcher James Jackson, PsyD, where 95 percent of the members are women. Bishop says many of the women also share similar stories of gas ignition or lack of awareness on the part of medical professionals. “When the doctors tell you nothing is wrong with you, you lose hope. It’s dangerous.”
Frank Ziegler first met Krumholz after a friend sent him a Washington Post article on long COVID. He was surprised by the words of the Yale cardiologist, one of the doctors interviewed for the story, who asked providers not to rule out the disease.
“I thought, there’s a doctor who understands that! He understands, he’s listening to his patients,” says Ziegler. “It’s a miracle, I think. I don’t believe in coincidences. “
He decided to contact by email on a Friday night, expressing his gratitude and sharing his own story. He did not expect to hear an answer, but to his surprise, Krumholz answered only two days later.
“I’m not his patient, I’m just someone from Nashville sending an email,” he says …