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COVID Long Haulers Are Calling Attention to Chronic Illnesses

0 2 years ago

When the first wave of coronavirus infections hit the U.S. in March 2020, what kept me up at night was not only the tragedy of the acute crisis but also the idea that we might soon be facing a second crisis—a pandemic of chronic illness triggered by the virus. I had just finished reporting and writing a book about infection-associated syndromes and contested chronic illnesses, long an underresearched and dismissed area of medicine. Medical science has increasingly understood that infections can trigger ongoing physical symptoms in a subset of people, yet the medical establishment has typically ignored the experiences of those people. Such conditions include myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), so-called chronic Lyme disease, and more.

Sure enough, later that spring a cohort of patients who had caught the coronavirus in March began reporting that they were still not better. In online message boards, patients began sharing stories of what they called long COVID. Groups of “long haulers” banded together to call for more attention and research into their plight.

The clamor, combined with the scope of the problem, had a clear impact on medical attitudes, making long COVID visible in ways that ME/CFS had struggled for decades to become. In a matter of months centers dedicated to treating long COVID sprang up at respected research hospitals, such as the Center for Post-COVID Care at Mount Sinai in New York City. In itself, this is a hopeful development: when I got sick with a similar condition a decade ago, I longed for such a place.


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