A British historian, an Italian archaeologist, and an American educator have never met in person, but they share a remarkable bond over the pandemic.
These three women, who suffer from eerily similar symptoms, are credited with describing, naming and helping bring the long-running COVID into the public consciousness in early 2020.
Rachel Pope from Liverpool took to Twitter in late March 2020 to describe her excruciating symptoms after contracting the then-unnamed coronavirus. Elisa Perego of Italy first used the term “long COVID” in a May tweet of the same year. Amy Watson of Portland, Oregon, was inspired to name her Facebook support group after the trucker cap she wore, and soon “trucker” became part of the pandemic lexicon.
Nearly three years after the start of the pandemic, scientists are still trying to figure out why some people get long-term COVID and why a small proportion — including three women — have lasting symptoms.
Millions of people around the world are chronically ill with COVID, reporting a variety of symptoms including fatigue, lung problems, brain fog and other neurological symptoms. Data suggests that most recover significantly within a year, but recent data show that it has resulted in more than 3,500 deaths in the US.
Here is some of the latest evidence:
ARE WOMEN AT GREATER RISK?
Many studies and anecdotal evidence suggest that women are more likely than men to develop prolonged COVID.
There may be biological reasons.
Women’s immune systems typically respond more strongly to viruses, bacteria, parasites and other microbes, said Sabra Klein, a professor at Johns Hopkins who studies immunity.
Women are also much more likely than men to have autoimmune diseases where the body mistakenly attacks its own healthy cells. Some scientists believe that prolonged COVID may be the result of an autoimmune response caused by the virus.
Women’s bodies also have more fatty tissue, and new research suggests that the coronavirus can hide in fat after infection. Scientists are also studying whether fluctuations in female hormone levels may increase the risk.
Another possible factor is that women are more likely than men to seek medical care and are often more attuned to changes in their bodies, Klein noted.
“I don’t think we should ignore it,” she said. Biology and behavior are likely at play, Klein said.
So it’s perhaps no coincidence that it’s three women who have helped shed light on the long history of COVID.
Pope, 46, began documenting what she was experiencing in March 2020: flu-like symptoms then affected her lungs, heart and joints. After a month, she started having some “okay” days, but the symptoms did not go away.
She and some similarly ill colleagues contacted Perego via Twitter. “We started kind of coming together because it was literally the only place we could do it,” Pope said. “In 2020, we would joke that we would get together for Christmas and have a party,” Pope said. “Then obviously it went on and I think we stopped joking around.”
In April of this year, Watson founded a group of virtual trucks. The others soon learned about this nickname and adopted it.
Several studies suggest that the ubiquitous Epstein-Barr virus may play a role in some cases of prolonged COVID.
Inflammation caused by a coronavirus infection can activate herpes viruses that remain in the body after causing an acute infection, said Dr. Timothy Heinrich, a virus expert at the University of California, San Francisco.
Epstein-Barr virus is one of the most common of these herpes viruses, with an estimated 90% of the US population infected with it. The virus can cause mononucleosis or symptoms that can be dismissed as a cold.
Heinrich is one of the researchers who discovered immune markers that signal Epstein-Barr reactivation in the blood of long-term COVID patients, especially those suffering from fatigue.
Not all patients with prolonged COVID have these markers. But it’s possible that Epstein-Barr causes symptoms in those who develop them, although scientists say more research is needed.
Some scientists also believe that Epstein-Barr causes chronic fatigue syndrome, a condition that shares many similarities with long-term COVID, but this is also unproven.
Obesity is a risk factor for severe COVID-19 infections, and scientists are trying to understand why.
Stanford University researchers are among those who have found evidence that the coronavirus can infect fat cells. In a recent study, they found the virus and signs of inflammation in fat tissue taken from people who died of COVID.
Laboratory studies have shown that the virus can reproduce in adipose tissue. This raises the possibility that adipose tissue can serve as a “reservoir,” potentially fueling long-lasting COVID.
Can fat removal treat or prevent some cases of long-term COVID? It’s a difficult question, but the research is preliminary, said Dr. Kathryn Blish, a professor of infectious diseases at Stanford and the study’s senior author.
Scientists at the University of Texas Southwestern Medical Center are studying leptin, a hormone produced by fat cells that can affect the body’s immune response and promote inflammation.
They plan to study whether injections of the produced antibodies can reduce leptin levels – and in turn, inflammation from the coronavirus infection or long-term COVID.
“We have a good scientific basis, along with some preliminary data, to say that we may be on the right track,” said Dr. Philip Scherer.
It has been estimated that about 30% of people infected with the coronavirus will develop long-term COVID-19, based on data from the beginning of the pandemic.
Most people who have long-lasting, recurring, or new symptoms after infection recover in about three months. Among those who have symptoms after three months, about 15% will have symptoms for at least another nine months, according to a recent study in the Journal of the American Medical Association.
Figuring out who is at risk for years of symptoms “is such a difficult question,” said Dr. Lawrence Purpura, an infectious disease expert at Columbia University.
People with severe infections appear to be at greater risk of long-term exposure to COVID, although it can also affect people with mild infections. Those whose infections cause severe lung damage, including scarring, may experience shortness of breath, cough or fatigue for more than a year. And a smaller group of patients with mild initial COVID-19 infections may develop neurological symptoms for more than a year, including chronic fatigue and brain fog, Purpura said.
“Most patients eventually recover,” he said. “It’s important that people know that.”
It’s little consolation for the three women who helped the world recognize the long-running COVID.
Pereg, 44, suffered heart, lung and neurological problems and remains critically ill.
She knows scientists have learned a lot in a short time, but she says “there’s a gap” between ongoing COVID research and medical care.
“We need to translate scientific knowledge into better treatment and policy,” she said.
Watson, who is approaching 50, says she “never recovered.” She had severe migraines as well as digestive, nerve and leg problems. She recently developed severe anemia.
She would like the medical community to have a more organized approach to treating lingering COVID. Doctors say not knowing the underlying cause or causes makes it difficult.
“I just want to get my life back,” Watson said, “and it doesn’t seem like that’s all that’s possible.”