Since a new coronavirus emerged from Wuhan, China late in 2019, some 3.8 million cases and 265,000 deaths have been reported world-wide. Governments are focused on treating patients acutely sick with COVID-19, the disease caused by the new virus SARS-CoV-2, and slowing the spread of the virus. However, a second crisis of long-term disability is looming.
A large body of research shows that long-term illness and disability can be triggered by viral infections.
Some of these illnesses include postural orthostatic tachycardia syndrome (POTS), myasthenia gravis, multiple sclerosis, Guillain-Barré syndrome, and type I diabetes. Some patients in Italy have developed Guillain-Barré after COVID-19.
ME/CFS (myalgic encephalomyelitis/ chronic fatigue syndrome) is a common but less well-understood neurological disease with notable effects on cognitive and muscular function. Up to 80% of cases of ME/CFS are initiated by infection but may also arise in the wake of a surgery or traumatic injury, similar to Guillain-Barré.
The ME/CFS community, researchers, clinicians, advocates and patients are deeply concerned about the potential for COVID-19 to develop into ME/CFS and other post-infectious diseases and disorders. With an estimated 25% of people with ME/CFS housebound or bedbound, patients suffering from the lowest quality of life of any disease to which it has been compared, including multiple sclerosis, and only ~13% of patients are able to return to full-time work, the potential for many new cases of ME/CFS in the wake of COVID-19 is no small matter.
The National Institutes of Health (NIH) agrees. Dr. Walter Koroshetz, Director of the National Institute for Neurological Disorders and Stroke (NINDS) at NIH, stated that “this idea of a viral infection — infectious mono, Lyme disease, for instance — triggering an immune response that then goes on to [initiate] ME/CFS is front and center in [researcher’s] minds.” The NIH is currently studying post-infectious ME/CFS at their Clinical Center in Maryland.
There is a lot of evidence that when a severe infection sweeps through the population, ME/CFS will often follow. The Institute of Medicine’s (NAM) 2015 report concluded that ME/CFS may be triggered by a number of acute viral infections, including herpesviruses such as EBV or HHV-6, enteroviruses, and echoviruses. A study on Epstein-Barr virus, Q Fever, and Ross River virus showed that ~12% of subjects across the board met ME/CFS criteria at 6 months after clearing the infection; and another study of people with mononucleosis (Epstein-Barr virus) produced identical numbers. 20% of patients with West Nile Virus (n=140) met the criteria for CFS six months after tests first returned negative for West Nile. There are also a handful of highly-publicized outbreaks leading to ME/CFS: some of the biggest ones include the Epstein-Barr Viral outbreaks in New York; the Lake Tahoe outbreak in Nevada; and the Royal Free Outbreak in London.
SARS-CoV-2 would not be the first coronavirus to result in documented ME/CFS. Studies have shown that long-lasting disabling symptoms commonly occur in people who contracted two other coronaviruses that cause SARS and Middle East Respiratory Syndrome (MERS). In one study, 27% of SARS survivors were found to meet CFS criteria several years after developing SARS.
That a wide variety of different infectious organisms can lead to the same disease-state may seem surprising – but ME/CFS may be caused by the body’s unexpectedly uniform reaction to any number of assaults. Dr. Ian Lipkin, the Director of the Center for Infection and Immunity and a coronavirus and ME/CFS expert, stated in an interview with #MEAction, “I wouldn’t suggest that coronavirus is the cause of ME; rather, innate immune mechanisms in response to a virus may cause it, meaning that many viruses can probably [initiate ME/CFS].” One study that he was a co-author of found that getting H1N1 doubles a person’s risk of developing ME/CFS.
Doctors are starting to see many emerging long-term effects of COVID-19 and in Italy, neurologists have already created a separate neuro unit for COVID-19 patients, who are being treated for “stroke, delirium, epileptic seizures, and non-specific neurologic syndromes that look very much like encephalitis,” according to Neurology Today. Professor Chris Ponting, Chair of Medical Bioinformatics at University of Edinburgh, explained to #MEAction that he would “expect that [of the] people who have COVID-19 symptoms quite severely… about 10% [would] have fatigue-like syndromes after 6 months, given current evidence.”
In an interview with #MEAction, Dr. Alain Moreau of Université de Montréal, Montréal, Québec, concurred. “Coronavirus leading to more cases of ME will happen for sure, unfortunately. A previous study in which ~200 people who survived the ICU in a previous outbreak of a coronavirus infection, close to 1/3 developed ME/CFS-like symptoms and were unable to get back to work over a year later… there are some preliminary reports of the same from COVID-19. This should not be a surprise, given that other cases [of ME/CFS] are reported to be post-viral, the classic being EBV. The question is not ‘will this happen’ but how many will suffer.”
Infectious Diseases and Epidemiology professor at Harvard University, Dr. Marc Lipsitch, predicted in February that 40-70% of the world’s population will contract SARS-CoV-2 within a year. Using his most conservative estimate of 40%, over 3.12 billion people world-wide may contract SARS-CoV-2 by March of next year. Based on the myriad studies showing that a wide range of infections can trigger ME/CFS and the many early case reports of people continuing to have neurological symptoms months after first getting COVID-19, it is likely that there will soon be a flood of new ME/CFS patients that medical systems around the world are woefully unprepared to treat.
In addition, COVID-19 is hitting racial and ethnic minorities and those of low socioeconomic status the hardest; yet this demographic is also the least likely to be diagnosed with ME/CFS even when they meet the diagnostic criteria. The crisis of care will be magnified in these communities.
If we wait to address post-COVID as a separate issue, the pandemic apparatus and the research and clinical funding for COVID-19 will have long since dissolved, leaving millions ill. Many will be undiagnosed or misdiagnosed, and at risk of being given treatment recommendations that will worsen their condition. We will only truly know how many people with COVID-19 develop ME/CFS if the NIH, CDC, and national health organizations worldwide begin tracking post-viral illness now. In many ways, we have thus far failed our coronavirus responses: we have the opportunity, now, to do better for post-COVID patients who face long-term disability.
“We need to be ready for the next wave,” Moreau says. “We are not out of the woods, but we also need to be ready for what is coming next.”
Thanks to Ian Lipkin, Alain Moreau, and Christopher Ponting for their interviews. Congratulations to Dr. Moreau on leading OMF’s fourth Collaborative Research Center!
If you are interested in reaching out to us for more information, interviews, or connections to ME/cfs experts, please reach out to [email protected]