A British historian, an Italian archaeologist and an American preschool teacher have never met in person, but they share a major epistemic bond.
Suffering from frighteningly similar symptoms, three women are credited with describing, naming and helping to catapult COVID into the public consciousness in the early 2020s.
Rachel Pope, from Liverpool, took to Twitter in late March 2020 to describe her bedeviling symptoms, then unknown, after contracting the coronavirus. Elisa Perego in Italy first used the term “long COVID” in a tweet in May of that year. Amy Watson in Portland, Oregon, was inspired to name her Facebook support group by the trucker hat she wore and the “Long Hauler.” Soon the pandemic became part of the lexicon.
Nearly three years into the pandemic, scientists are still trying to figure out why some people get Covid so long and why a small proportion – including three women – have permanent symptoms.
Millions of people around the world have chronically suffered from COVID, reporting a variety of symptoms including fatigue, lung problems, and brain fog and other neurological symptoms. Evidence suggests that most recover substantially within a year, but current statistics show that it has contributed to more than 3,500 American deaths.
Here is some of the latest evidence:
Are women more at risk?
Several studies and anecdotal evidence suggest that women are more likely than men to develop covid over time.
May have biological causes.
Women’s immune systems typically mount stronger responses to viruses, bacteria, parasites and other germs, noted Sabra Klein, a professor at Johns Hopkins who studies immunity.
Women are also more prone than men to autoimmune diseases, where the body mistakenly attacks its own healthy cells. Some scientists believe that prolonged exposure is the result of an autoimmune response triggered by the Covid virus.
Women also tend to have more fat tissue in their bodies, and emerging research suggests that the coronavirus may hide in fat after infection. Scientists are also studying whether fluctuating hormone levels in women may increase the risk.
Another possible factor: Women are more likely than men to seek health care and are often more receptive to changes in their bodies, Klein noted.
“I don’t think we should ignore it,” she said. Both biology and behavior are at play, Klein said.
It may not be a coincidence that it was three women who helped shine the first light on the long COVID.
The 46-year-old Pope began describing what she was experiencing in March 2020: flu-like symptoms, which then affected her lungs, heart and joints. After a month she began to have some “better” days, but the symptoms continued.
He and some similarly ill colleagues connected with Perego on Twitter. “We started coming together because it was literally the only place we could do that,” Pope said. “In 2020, we will get together for Christmas and have a party,” the Pope said. Obviously it went on, and I think we stopped joking.”
Watson started her virtual long hauler group that April. Others quickly learned of that nickname and embraced it.
Several studies suggest that the ubiquitous Epstein-Barr virus may play a role in some cases of chronic COVID.
Inflammation caused by a coronavirus infection can activate herpes viruses, which remain in the body after an acute infection, said Dr. Timothy Heinrich said.
Epstein-Barr virus is the most common of these herpes viruses: an estimated 90% of the US population is infected with it. The virus can cause mononucleosis or symptoms that can be dismissed as a cold.
Heinrich is one of the researchers who found immune markers indicating Epstein-Barr reactivation in the blood of chronic COVID patients, particularly those with fatigue.
Not all chronic COVID patients have these markers. But it’s possible that Epstein-Barr is causing symptoms in those who do, though scientists say more study is needed.
Some scientists also believe that Epstein-Barr triggers chronic fatigue syndrome, a condition that bears many similarities to prolonged COVID, but that is also unproven.
Obesity is a risk factor for severe COVID-19 infections and scientists are trying to understand why.
Stanford University researchers have found evidence that the coronavirus can infect fat cells. In a recent study, they found signs of the virus and inflammation in fat tissue taken from people who died of COVID.
Laboratory tests have shown that the virus can reproduce in fat tissue. This raises the possibility that fat tissue can act as a “reservoir,” potentially fueling prolonged COVID.
Can removing fat tissue treat or prevent some cases of chronic COVID? Stanford professor of infectious diseases and senior author of the study. It’s a vexing question, but the research is preliminary, said Catherine Bliss.
Scientists at the University of Texas Southwestern Medical Center are studying leptin, a hormone produced by fat cells that can influence the body’s immune response and promote inflammation.
They plan to study whether injections of manufactured antibodies can reduce leptin levels — and consequently inflammation — from coronavirus infection or prolonged COVID.
“We have a good scientific basis, along with some preliminary data, to argue that we are on the right track,” Dr. Philip Scherer said.
It is estimated that about 30% of people infected with the coronavirus will develop chronic COVID, based on data from earlier in the pandemic.
Most people who have dull, frequent or new symptoms after infection will recover after about three months. Among those with symptoms at three months, about 15% will continue to have symptoms for at least nine months, according to a recent study in the Journal of the American Medical Association.
Columbia University infectious disease specialist Dr. Figuring out who is at risk for years-long symptoms is “such a complex question,” Lawrence Purpura said.
Those with severe infections appear to be at higher risk of long-term Covid, although it can also affect people with mild infections. People whose infection causes severe lung damage, including scarring, may experience shortness of breath, cough, or fatigue for more than a year. And a small group of patients with mild early-onset COVID-19 infection may develop neurological symptoms for more than a year, including chronic fatigue and brain fog, Purpura said.
“Most patients will eventually recover,” he said. “It’s important for people to know that.”
It’s small consolation for the three women who helped the world recognize the long covid.
Perego, 44, suffered heart, lung and neurological problems and is critically ill.
She knows scientists have learned a lot in a short time, but she says “there’s a gap” between long-term COVID research and medical care.
“We need to translate scientific knowledge into better treatment and policy,” she said.
Watson, who turned 50, says she “never recovered.” She had severe migraines, as well as digestive, nerve and leg problems. Recently he developed severe anemia.
She wishes the medical community had a more systematic approach to treating chronic COVID. Doctors say that it is difficult to know the underlying cause or causes.
“I just want my life back,” Watson said, “and it doesn’t seem possible.”
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