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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.”