By May 2020, affected patients had already formed support groups thousands strong, coined terms like long Covid and long-hauler and even conducted research on their own communities. Even that March, people with similar illnesses like myalgic encephalomyelitis (also known as chronic fatigue syndrome or M.E./C.F.S.) had warned that the new pathogen would trigger a wave of disability. They knew then what is clear now: People infected by Covid can be pummeled by months or years of debilitating symptoms, including extreme fatigue, cognitive impairment, chest pain, shortness of breath and postexertional malaise — a state in which existing symptoms worsen after even minor physical or mental exertion.
New York Times, Opinion, Guest Essay, By Ed Yong, 11 December 2023
Covering long Covid solidified my view that science is not the objective, neutral force it is often misconstrued as. It is instead a human endeavor, relentlessly buffeted by our culture, values and politics. As energy-depleting illnesses that disproportionately affect women, long Covid and M.E./C.F.S. are easily belittled by a sexist society that trivializes women’s pain, and a capitalist one that values people according to their productivity.
Societal dismissal leads to scientific neglect, and a lack of research becomes fodder for further skepticism. I understood these dynamics only after interviewing social scientists, disability scholars and patients themselves, whose voices are often absent or minimized in the media. Like the pandemic writ large, long Covid is not just a health problem. It is a social one, and must also be understood as such…
After my most recent piece, which explained how severe the fatigue of long Covid and M.E./C.F.S. can be, one long-hauler told me that her sister said, “I did not understand how sick you really felt.” Even healthy people started writing in: A 25-year-old reader who has spent her life watching her mother wrestling with M.E./C.F.S. said that until reading that piece, “I truly didn’t get it (or maybe didn’t believe her).” People who had been sick for years or even decades said it was the first time they had seen their lives accurately, fully and compassionately reflected in the press.
This is a damning indictment of my profession, my prepandemic self included. I am far from the only journalist covering this topic but clearly there aren’t enough of us. How could so many people feel so thoroughly unrepresented by an industry that purports to give voice to the voiceless?