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Many people with long COVID feel that science is failing them. Neglecting them could make the pandemic even worse.

By Ed Yong

One of the biggest misconceptions about long COVID is that it is entirely new. The SARS-CoV-2 coronavirus may have emerged in 2019, but many infections can lead to similar long-term symptoms. Long COVID shares traits with chronic illnesses including ME/CFS, fibromyalgia, mast cell activation syndrome (MCAS), and dysautonomia including postural tachycardia syndrome (POTS). Although long COVID isn’t identical to any of them, the overlaps are substantial. “There are likely several things unique to COVID-19, but we’re not starting from scratch,” McCorkell told me.

For example, many long-haulers have the hallmark symptom of ME/CFS—post-exertional malaise, in which mild bursts of activity trigger dramatic crashes. Clusters of ME/CFS have followed many disease outbreaks, including the original SARS epidemic, in 2003. And when the pandemic began in 2020, ME/CFS researchers and patients saw long COVID coming before anyone else did. “For years, we’ve been shouting from the rooftops that this is something that happens after an infectious onset, but it’s been hard to get people to pay attention,” Michael VanElzakker of Harvard, who is one of the few scientists to study the condition, told me. Much like long COVID, ME/CFS has been trivialized as a psychological condition, its patients mocked and its researchers underfunded. “It’s a terrible outrage,” Maureen Hanson, a molecular biologist at Cornell who also works on ME/CFS, told me. “If we had a better understanding of it, we’d be ahead of the game” with long COVID.

Long COVID, like every aspect of the pandemic, has also been plagued by epistemic trespassing: people overconfidently making claims about fields in which they have no pertinent expertise. Newspapers are printing op-eds about the condition by doctors with little knowledge of it. Long-haulers have told me that reporters and researchers are prioritizing academics over patients as knowledgeable sources, even when the former are new to long COVID. “I think some people feel like they know what long COVID is even when they don’t,” Davis said.

Good long-COVID researchers should “know how to speak ME/CFS [and] know how to speak dysautonomia,” David Putrino told me. For example, a team at Yale New Haven Hospital recently showed that even though long-haulers’ lungs and heart can correctly get oxygen into their bloodstream, their muscles and other organs struggle to extract and use the gas. This might help explain why many long-haulers experience post-exertional malaise and shortness of breath, and also why many show normal results on standard heart and lung tests. And the team only figured this out because their colleagues had found a similar effect in ME/CFS patients, and “we shared an office and talked to them,” Denyse Lutchmansingh of Yale told me. The NIH also consulted with ME/CFS researchers and patients as it developed the RECOVER initiative: “It is our hope that people who have [long COVID] may benefit from research on ME/CFS” and vice versa, a spokesperson told me.


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“We’re regenerating an evidence base that already exists,” Body Politic’s Angela Meriquez Vázquez told me.

Well I'm going to go ahead and take credit here. No one knows what I'm talking about, lol. It's ok. As long as I just say it, it makes me feel better