men the 1980s, many people in the medical community treated chronic fatigue syndrome as a joke. Some doctors dismissed the patients’ debilitating symptoms, including crushing fatigue and falls after exercise, as figments of their imagination. The condition was even dismissively dubbed the “yuppie flu” by the media, as many cases were reported among wealthy white women.
At the infectious disease clinic where Dr. Lucinda Bateman was finishing her medical training, some doctors didn’t want to bother treating patients with chronic fatigue. When Bateman left to go into private practice, she recalls former colleagues of hers recording a message on her clinic’s answering machine directing anyone with CFS to call Bateman so they don’t have to. involve.
Despite the sick joke, they were referring patients to the right person. Nothing about the condition (now called myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS) was fun for Bateman. His 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 spent his career treating people with similar conditions and searching for the answer to one big question: Why do seemingly innocuous viruses sometimes cause devastating and long-lasting symptoms?
Nearly three years into the pandemic, he has plenty of company in his 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 closely resemble the fatigue, cognitive decline, and post-exertional falls (formally known as post-exertional malaise or PEM) seen among ME/CFS patients.
Studies also suggest that people who have survived COVID-19 are at higher risk of serious complications, such as heart and lung problems, dementia, kidney problems, and liver damage, compared to people who have not been infected. “SARS-CoV-2 is definitely a highly pathogenic virus that attacks many, many aspects of the body,” says Bateman, because it can bind to cells in various organ systems.
But SARS-CoV-2 is not unique in its ability to cause severe and widespread damage to the body. “There are a dozen other pathogens known to cause these post-acute infection syndromes,” says Akiko Iwasaki, an immunobiologist at Yale University who recently co-authored a Nature review article on these conditions. “Some are very well studied, while others are not documented at all.”
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Viruses, both routine and rare, are linked to long-lasting complications, from vision loss and fibromyalgia to autoimmune disorders. Even common pathogens like the flu and Epstein-Barr (a cause of mononucleosis) carry potential long-term risks. Influenza can cause 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 believed to be possible triggers for ME/CFS.
Viruses “range from being asymptomatic to suddenly being in the ICU,” says Bateman, “and from complete resolution to persistent, sometimes permanent problems.”
A recent study published in JAMA Network Open illustrates how often routine illnesses can lead to persistent problems. The researchers tracked 1,000 US adults with symptoms similar to those of COVID-19. Around three-quarters of them tested positive for COVID-19, while the remaining people tested negative, suggesting they were likely suffering from similar respiratory illnesses. After three months, almost 40% of people with COVID-19, and more than half of those who tested negative, reported ongoing physical or mental health problems, although it was not possible to determine exactly why. “People with all kinds of different communicable diseases experience lasting negative impacts,” says co-author Lauren Wisk, an assistant professor at the UCLA David Geffen School of Medicine.
However, post-infectious conditions received little attention before the pandemic. As of 2018, less than a third of US medical schools taught students about ME/CFS, according to the US Centers for Disease Control and Prevention (CDC), and the ME/CFS researchers have worked with limited federal funds for years. In 2019, the National Institutes of Health (NIH) awarded $15 million to study ME/CFS—a pittance, experts say, considering the disease affects up to 2.5 million people in the US. USA
Postviral diseases often do not 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 the patient’s symptoms: whether they are unable to participate in pre-illness activity levels for at least six months and experience symptoms including profound fatigue, PEM, and non-rejuvenating sleep, may meet the criteria.
However, the symptoms do not always tell the whole story. Research suggests that multiple viruses can trigger ME/CFS (although it doesn’t always follow a viral infection), and it’s not always possible to know when someone was infected, why, and why it caused long-term symptoms.
“You can tell that the person is sick,” says Bateman. “But you can’t relate to the initial infection very well.”
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Those 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 and scientific community,” says Iwasaki. “It’s swept under the rug, basically, because people can’t find an explanation.”
Add to the equation that the majority of ME/CFS patients are women, whose symptoms are often ignored by doctors, and “all of these things converge to suppress discussion of ME/CFS” and other postviral conditions, Iwasaki says. “Whereas now,” with millions of people developing Long COVID around the same time, “we can no longer suppress it.”
Long COVID has sparked a new wave of interest in postviral disease, as well as a $1.15 billion research budget from the NIH. Recent studies on Long COVID have raised a number of possible causes, from lingering remnants of the virus in the body to small blood clots that cut 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 another virus (like SARS-CoV-2) reactivates them later in life and causes chronic symptoms, he explains. 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 in people with ME/CFS and long-term 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 Long COVID patients have abnormally low cortisol levels, which she says could contribute to symptoms like fatigue.
The hope, Bateman says, is that Long COVID care and research funding will also lead to breakthroughs for people who have been suffering from post-infectious syndromes for years. “Longtime COVID researchers are asking the same things we’ve always asked about ME/CFS,” she says. “Now, instead of having a small number of investigators who were underfunded, we now have a large number of investigators in all specialties and with really high funding levels.”
That can be a double-edged sword. In Klimas’s view, all the attention on Long COVID has dwarfed the longstanding efforts of some researchers to understand ME/CFS and other postviral illnesses. “Unfortunately, the ME/CFS research community has to focus their attention on Long COVID and they are not writing their ME/CFS grants,” she says. Klimas is currently working on a CDC-funded study comparing people with long-term COVID with those with ME/CFS, hoping to discover similarities and differences between the conditions, but says similar proposals from his lab have been rejected. recently by the NIH.
Whether researchers focus on long-standing COVID or longer-standing syndromes, it could be years before their findings translate into treatments. That underscores the importance of preventing as many viral infections as possible now, so that people don’t develop complications later. Masking and ventilation still go a long way toward 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 now.
Klimas says the public also needs a better understanding of the range of outcomes associated with viruses. Many people treat common viral infections as nuisances, rather than real health threats, and get over them to get back to work, school, or the gym. But Klimas says his decades of experience with ME/CFS suggest that rushing back to normal can overtax the body and contribute to complications.
“It really matters how you treat yourself after an acute infection,” she says. “You have to listen to your body when [you’re ill] and not trying to rush back and get back to your pre-illness schedule.”
It’s important to advance both public awareness and scientific research now, he says, not only for people who may contract COVID-19 or the flu this winter, but also for those who may get sick in the future.
“There will be another pandemic or some other virus,” says Klimas, “and there will be consequences.”
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