A British historian, an Italian archaeologist and an American preschool teacher have never met in person, but they share an important pandemic bond.
Plagued by eerily similar symptoms, the three women are credited with describing, naming and helping to bring the long COVID into public consciousness in early 2020.
Rachel Pope, from Liverpool, took to Twitter in late March 2020 to describe her troubling, then-unnamed symptoms following a coronavirus infection. Elisa Perego in Italy first used the term “long COVID”, in a tweet from May that year. Amy Watson in Portland, Oregon, was inspired to name her Facebook support group by the trucker cap she wore, and “long haul” quickly became part of the pandemic lexicon.
Nearly three years into the pandemic, scientists are still trying to figure out why some people get long COVID and why a small portion – including the three women – have lasting symptoms.
Millions of people around the world have had a long COVID, reporting various symptoms including fatigue, lung issues, brain fog, and other neurological symptoms. Evidence suggests most recover substantially within a year, but recent data shows it has contributed to more than 3,500 deaths in the United States.
Here is some of the latest evidence:
ARE WOMEN MORE AT RISK?
Numerous studies and anecdotal evidence suggest that women are more likely than men to develop long-term COVID-19.
There could be biological reasons.
Women’s immune systems generally develop stronger reactions to viruses, bacteria, parasites and other germs, noted Sabra Klein, a Johns Hopkins professor 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 the long COVID may have resulted from an autoimmune response triggered by the virus.
Women’s bodies also tend to have more fatty tissue, and emerging research suggests the coronavirus may be hiding in fat after infection. Scientists are also studying whether fluctuating hormone levels in women may increase the risks.
Another possible factor: Women are more likely than men to seek health care and are often more sensitive to changes in their bodies, Klein noted.
“I don’t think we should ignore this,” she said. Both biology and behavior are likely at play, Klein said.
So it’s perhaps no coincidence that it was three women who helped shed some light on the long COVID.
Pope, 46, began sharing what she was going through in March 2020: flu-like symptoms, then her lungs, heart and joints were affected. After a month, she started having “ok” days, but the symptoms persisted.
She and some equally 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 would joke that we would get together for Christmas and have a party,” Pope said. “Then obviously it continued, and I think we stopped joking.”
Watson launched its virtual long-haul group in April. The others quickly learned this nickname and adopted it.
MONOVIRUS
Several studies suggest that the ubiquitous Epstein-Barr virus may play a role in some cases of long COVID.
Inflammation caused by coronavirus infection can activate herpes viruses, which remain in the body after causing an acute infection, said Dr. Timothy Henrich, a virus expert at the University of California, San Francisco .
The Epstein-Barr virus is one of the most common of these herpes viruses: approximately 90% of the American population has been infected with it. The virus can cause mononucleosis or symptoms that can be considered a cold.
Henrich is among researchers who have found immune markers signaling Epstein-Barr reactivation in the blood of long COVID patients, particularly those with fatigue.
Not all long-time COVID patients have these markers. But it’s possible that Epstein-Barr causes symptoms in those who do, although scientists say more studies are needed.
Some scientists also believe Epstein-Barr triggers chronic fatigue syndrome, a condition that bears many similarities to long COVID, but is also unproven.
OBESITY
Obesity is a risk factor for serious COVID-19 infections, and scientists are trying to figure out 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 fatty tissue taken from people who died of COVID.
Laboratory tests have shown that the virus can replicate in fatty tissue. This raises the possibility that fatty tissue could serve as a “reservoir,” potentially fueling a long COVID.
Could fat tissue removal treat or prevent some long COVID cases? It’s a tantalizing question, but the research is preliminary, said Dr. Catherine Blish, a Stanford professor of infectious diseases and lead author of the study.
Scientists at the University of Texas Southwestern Medical Center are studying leptin, a hormone produced by fat cells that may influence the body’s immune response and promote inflammation.
They plan to study whether injections of a manufactured antibody could reduce leptin levels – and in turn inflammation from coronavirus infections or prolonged COVID.
“We have a good scientific basis as well as preliminary data to say that we could be on the right track,” said Dr. Philippe Scherer.
DURATION
It has been estimated that around 30% of people infected with the coronavirus will develop long COVID, based on pre-pandemic data.
Most people who have a sore throat, recurrent or new symptoms after an infection recover after about three months. Of those who show symptoms at three months, about 15% will continue to show symptoms for at least another nine months, according to a recent study published in the Journal of the American Medical Association.
Determining who is at risk of showing symptoms for years “is such a complicated question,” said Dr. Lawrence Purpura, an infectious disease expert at Columbia University.
People with severe infections appear to be at higher risk for long COVID, although it can also affect people with mild infections. Those whose infections cause severe lung damage, including scarring, may suffer from 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 longer than a year, including chronic fatigue and brain fog, Purpura said.
“The majority of patients will eventually recover,” he said. “It’s important that people know that.”
It’s small consolation for the three women who have helped the world recognize the long COVID.
Perego, 44, has developed heart, lung and neurological problems and remains critically ill.
She knows scientists have learned a lot in a short time, but she says “there is a gap” between the long COVID research and medical care.
“We need to translate scientific knowledge into better treatments and policies,” she said.
Watson, who is nearing 50, says she has “never had a recovery”. She had severe migraines, as well as digestive, nervous and foot problems. Recently, she developed severe anemia.
She wants the medical community to have a more organized approach to dealing with COVID-19 in the long term. Doctors say not knowing the underlying cause or causes makes it difficult.
“I just want my life back,” Watson said, “and it doesn’t seem like that’s all that’s possible.”
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