In 2011, then-28-year-old Jennifer Brea started to show strange symptoms after getting over an infection. It took years for her to be diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
"I was disbelieved eight years ago when I first began showing neurological symptoms of ME after a viral infection," Brea, the founder of ME/CFS activism group #MEAction, tells Bustle. "The years I went undiagnosed made my health much, much worse," she says.
Researchers and activists are concerned that just as Brea developed symptoms following an infection, some people who've survived COVID-19 might go on to develop ME/CFS.
"With viral and bacterial infections and stress being proposed as potential triggers in ME/CFS, it is possible that high levels of severe COVID-19 infections could lead to an increase in cases of ME/CFS in the future," Karl Morten Ph.D., chief investigator at the Nuffield Department of Women's & Reproductive Health at the University of Oxford and a world expert in ME/CFS, tells Bustle.
People who develop ME/CFS have symptoms like fatigue, sleep problems, issues with memory and cognition, and shifts in their autonomic nervous systems and immune systems, Dr. Lucinda Bateman, M.D., head of the Bateman Horne Center for research into ME/CFS, tells Bustle. "Because we generally, in the past, haven’t taken viruses seriously, we simply tell patients to 'go home and rest up,'" she says. "The significant fraction (which might be as high as 1-10%) of patients who do not recover normally after infection have often been marginalized and forgotten." The Centers for Disease Control and Prevention (CDC) estimates that 90% of all people with ME/CFS haven't been diagnosed.
"I do not want to see this happen to the growing number of people with lingering COVID symptoms," Brea says.
The SARS epidemic of 2003, which was also caused by a coronavirus, provides a window into what could happen with COVID-19. "While we don't know whether COVID-19 will lead to ME/CFS, the fact that some individuals who became ill long ago with SARS never recovered their former health raises this possibility," Professor Maureen Hanson, Ph.D., director of the Center for Enervating Neuroimmune Disease at Cornell University, tells Bustle. A study published by BMC Neurology in 2011, for example, looked at 22 health care workers who'd developed SARS and were still suffering long-term health effects. Many of their symptoms pointed to chronic fatigue syndrome.
The significant fraction of patients who do not recover normally after infection have often been marginalized and forgotten.
It's very hard to diagnose ME/CFS, experts tell Bustle, as there is no test for it. "Although numbers of patients with ME/CFS are high over one million in the U.S. and 200,000 in the UK, it is not possible to determine how many new cases develop each year," Morten says. So many people are initially misdiagnosed that tracking cases is very hard. According to a report from the Institute of Medicine in 2015, 67-77% of people with ME have said it took longer than one year to be diagnosed, and 29% waited over five years. Women are also more likely to have it than men: a study published in Frontiers in Pediatrics in 2018 found that women make up 60-65% of diagnosed cases. There's also no cure for ME/CFS; treatment tends to focus on managing the symptoms with therapy and medication.
Morten is hopeful that COVID-19 could actually provide an opportunity for ME/CFS research. A lot of people who've recovered from the coronavirus have provided blood samples, and those could be tested if they develop signs of ME in the future. "Potential biomarkers of ME/CFS are emerging, and the recovered COVID-19 cohort gives us a great opportunity to test them," Morten says.
Of course, just because somebody has recovered from the coronavirus — or any kind of viral infection — doesn't mean they're guaranteed to develop ME. "The viral trigger may not be the whole story; an individual’s susceptibility to develop ME/CFS is potentially as important as the severe viral infection," Morten says. People who already have ME also need to be monitored closely by scientists right now, Hanson adds, to track how their immune systems might be responding to COVID-19.
The research community is hoping that the coronavirus pandemic could wake people up to the long-term effects of ME. "We should be able to prevent [these diseases], mitigate the consequences as they happen, and validate the experiences of people who suffer from them," Dr. Bateman says. The world is still catching up to ME — but this virus could change the way we think about the syndrome, and the people who have it.
Dr. Lucinda Bateman, M.D.
Professor Maureen Hanson, Ph.D.
Karl Morten, Ph.D.
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