In the 1980s, many in the medical community considered chronic fatigue syndrome a catchphrase. Some doctors have dismissed patients’ debilitating symptoms, including overwhelming fatigue and post-exercise crashes, as a figment of their imagination. The media even dismissively dubbed the disease “yuppie flu,” as many cases were reported among affluent white women.
In the infectious disease clinic where Dr. Lucinda Bateman was completing her medical training at the time, some doctors didn’t want to bother treating patients with chronic fatigue. When Bateman left for private practice, she recalls her former colleagues recording a message on their clinic’s answering machine, instructing anyone with chronic fatigue syndrome to call Bateman so they wouldn’t have to s ‘imply.
Despite the bad taste joke, they were sending patients to the right person. Nothing about the condition (which today is called myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS) was funny to Bateman. Her older sister developed ME/CFS after a series of health problems, including strep throat and mononucleosis, and she knew how devastating it could be. Bateman has dedicated his career to treating people with similar illnesses and seeking the answer to a big question: Why do seemingly harmless viruses sometimes cause devastating and long-lasting symptoms?
Almost three years into the pandemic, she has plenty of company in her search for an answer. Millions of people around the world have developed Long COVID, or long-lasting symptoms that follow a case of COVID-19. Many of these symptoms are very similar to the fatigue, cognitive decline, and post-exercise crashes (formally known as post-exercise sickness or PEM) seen in patients with ME/CFS.
Studies also suggest that people who have survived COVID-19 are at increased risk of serious complications, including heart and lung problems, dementia, kidney problems and liver damage, compared to those who have not. infected. “SARS-CoV-2 is definitely a very pathogenic virus that attacks so many aspects of the body,” Bateman says, because it’s able to bind to cells in a variety of organ systems.
But SARS-CoV-2 is not unique in its ability to cause severe, widespread harm to the body. “There are a dozen other pathogens known to cause these acute post-infectious syndromes,” says Yale University immunobiologist Akiko Iwasaki, who recently co-authored a Nature review article on these conditions. “Some are very well researched, while others are not documented at all.”
Read more: You could have long COVID without even knowing it
Common and rare viruses are linked to long-lasting complications, from vision loss and fibromyalgia to autoimmune diseases. Even common pathogens like influenza and Epstein-Barr (a cause of mononucleosis) pose potential long-term risks. The flu can lead to inflammation of the brain and heart, and Epstein-Barr is associated with Guillain-Barré syndrome, a rare condition in which the body attacks its own nervous system, sometimes leading to paralysis. Both viruses are also thought to be possible triggers for ME/CFS.
Viruses “run the gamut from being asymptomatic to being suddenly in the ICU,” Bateman says, “and from completely resolved to persistent, sometimes permanent problems.”
A recent study published in Open JAMA Network illustrates how often common illnesses can lead to persistent problems. The researchers followed 1,000 American adults with COVID-like symptoms. About three-quarters of them tested positive for COVID-19, while the rest tested negative, suggesting they likely had similar respiratory illnesses. After three months, nearly 40% of people with COVID-19 – and more than half of those who tested negative – reported persistent physical or mental health problems, although it was not possible to determine exactly why. “People with all kinds of communicable diseases experience lasting negative impacts,” says co-author Lauren Wisk, assistant professor at UCLA’s David Geffen School of Medicine.
Nevertheless, post-infectious conditions received little attention before the pandemic. In 2018, less than a third of US medical schools were teaching students about ME/CFS, according to the US Centers for Disease Control and Prevention (CDC), and ME/CFS researchers have worked with limited federal funding for years. In 2019, the National Institutes of Health (NIH) awarded $15 million to study ME/CFS — a pittance, experts say, given the disease affects up to 2.5 million people in the United States. -United.
Post-viral illnesses often don’t have easily observable biomarkers that can be used for diagnosis or research, Bateman says. ME/CFS, for example, is not assessed based on a single diagnostic test, but largely on a patient’s symptoms: whether they are unable to engage in levels of pre-illness activity for at least six months and exhibits symptoms such as profound fatigue, PEM, and non-rejuvenating sleep, they may meet the criteria.
However, the symptoms don’t always tell the whole story. Research suggests that ME/CFS can be triggered by several viruses (although it doesn’t always follow a viral infection), and it’s not always possible to tell when someone was infected, what and why it led to long-term symptoms.
“You can tell the person is sick,” Bateman says. “But you can’t link it very well to the initial infection.”
Read more: Long-running COVID experts and advocates say government is ignoring ‘greatest mass disabling event in human history’
These scientific challenges are real, and they have consequences that go beyond the laboratory. “People who have had these diseases for decades have been completely ignored by the medical community and the scientific community,” Iwasaki says. “It’s been swept under the rug, basically, because people can’t find an explanation for it.”
Add to the equation that most ME/CFS patients are women, whose symptoms are more often ignored by doctors, and “all of these things converge to suppress the discussion around ME/CFS” and other post-viral conditions, Iwasaki says. “Whereas now,” with millions of people developing Long COVID around the same time, “we can’t suppress it anymore.”
Long COVID has sparked a new wave of interest in post-viral illnesses, as well as a $1.15 billion research budget from the NIH. Recent studies on Long COVID have raised a number of potential causes, from remnants of the virus lingering in the body to tiny blood clots cutting off the flow of oxygen to organs.
Another leading theory is that viruses like Epstein-Barr lie dormant in the body after an infection, then eventually get reactivated by another virus (like SARS-CoV-2) later in life and cause chronic symptoms. says Dr. Nancy Klimas, director of the Institute for Neuroimmune Medicine at Nova Southeastern University in Florida and director of clinical immunology research at the Miami VA Medical Center. Research on people with both ME/CFS and Long COVID has raised this possibility.
Iwasaki’s research also suggests that viruses can disrupt the body’s circadian rhythms, which in turn could lead to hormonal imbalances that cause post-viral symptoms. Her research has shown that many patients with Long COVID have abnormally low cortisol levels, which she says could contribute to symptoms like fatigue.
The hope, Bateman says, is that research attention and funding on Long COVID will also lead to breakthroughs for people who have suffered from post-infectious syndromes for years. “Long COVID researchers are asking the exact same things we’ve always asked about ME/CFS,” she says. “Now, instead of having a small number of underfunded researchers, we now have a massive number of researchers in all specialties and with very high levels of funding.”
It can be a double edged sword. In Klimas’ view, all the attention to Long COVID has overshadowed some researchers’ longstanding efforts to understand ME/CFS and other post-viral illnesses. “Discouragingly, the ME/CFS research community has to turn its attention to Long COVID and they are not writing their ME/CFS grants,” she says. Klimas is currently working on a CDC-funded study that compares people with Long COVID to those with ME/CFS, hoping to uncover similarities and differences between the conditions, but she says similar proposals for his lab have recently been rejected by the NIH.
Whether researchers focus on long COVID or long-running syndromes, it could take years for their findings to translate into treatments. This highlights the importance of preventing as many viral infections as possible now, so people don’t develop complications later. Masking and ventilation still go a long way to preventing infection, Iwasaki says, as do innovations like nasal vaccines for COVID-19 and a vaccine for Epstein-Barr, both of which are in development.
Klimas says the public also needs a better understanding of the range of outcomes associated with viruses. Many people treat common viral infections as annoyances, more than real health threats, and push them away to return to work, school, or the gym. But Klimas says her decades of experience with ME/CFS suggests that rushing to get back to normal can overburden the body and contribute to complications.
“How you treat yourself after an acute infection is really important,” she says. “You have to listen to your body when [you’re ill] and don’t try to snap back and go straight back to your pre-illness schedule.
It’s important to make progress in both public awareness and scientific research now, she says, not just for people who might catch COVID-19 or the flu this winter, but for those who might fall. sick in the future.
“There will be another pandemic or another virus,” Klimas says, “and there will be consequences.”
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