By David Tuller, DrPH
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STAT and MuckRock co-publish investigative report slamming NIH’s RECOVER initiatve
Earlier this month, I wrote about the problem of exercise studies for long Covid that were failing to adequately address the issue of post-exertional malaise—including an announced project being funded by the National Institute’s of Health’s much-ballyhooed RECOVER initiative. Now STAT, the health and medical site, and MuckRock, a nonprofit newsroom, have just co-published a comprehensive look at the failures of the entire RECOVER effort, to which Congress allocated $1.2 billion in 2020. (Their report was published on STAT here, and on MuckRock here.)
According to the extensive reporting from STAT’s Rachel Cohrs and MuckRock’s Betsy Ladyzhets, the program has yielded next to nothing practical for patients so far. The headline: “The NIH has poured $1 billion into long Covid research—with little to show for it.” Ouch!
Here’s a key passage:
“The National Institutes of Health hasn’t signed up a single patient to test any potential treatments — despite a clear mandate from Congress to study them. And the few trials it is planning have already drawn a firestorm of criticism, especially one intervention that experts and advocates say may actually make some patients’ long Covid symptoms worse.
“Instead, the NIH spent the majority of its money on broader, observational research that won’t directly bring relief to patients. But it still hasn’t published any findings from the patients who joined that study, almost two years after it started.
“There’s no sense of urgency to do more or to speed things up, either. The agency isn’t asking Congress for any more funding for long Covid research, and STAT and MuckRock obtained documents showing the NIH refuses to use its own money to change course.
“So far, I don’t think we’ve gotten anything for a billion dollars,” said Ezekiel Emanuel, a physician, vice provost for global initiatives, and co-director of the Healthcare Transformation Institute at the University of Pennsylvania. “That is just unacceptable, and it’s a serious dysfunction.”
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Ed Yong returns with a new piece on long Covid
Ed Yong, the Pulitzer Prize-winning reporter for The Atlantic, has returned from sabbatical with a new piece on long Covid. In the spring of 2020, everyone involved in the ME world knew the pandemic heralded a likely wave of post-acute, non-specific medical complaints that would often be interpreted as psychogenic—just like after other viral epidemics. Yong brought widespread attention to the phenomenon with his first article about it on June 4th of that year.
In his new piece, with his usual intelligence and lucidity, Yong laments the current efforts to minimize the individual and societal costs of long Covid. He offers some thoughts as to why many people do not understand or recognize the serious impact of the condition:
“Almost every aspect of long COVID serves to mask its reality from public view. Its bewilderingly diverse symptoms are hard to see and measure. At its worst, it can leave people bed- or housebound, disconnected from the world. And although milder cases allow patients to appear normal on some days, they extract their price later, in private. For these reasons, many people don’t realize just how sick millions of Americans are—and the invisibility created by long COVID’s symptoms is being quickly compounded by our attitude toward them.”
And he tracks the shift in argumentation among the doubters from the early days of the pandemic, noting that “what was once outright denial of long COVID’s existence has morphed into something subtler: a creeping conviction, seeded by academics and journalists and now common on social media, that long COVID is less common and severe than it has been portrayed—a tragedy for a small group of very sick people, but not a cause for societal concern.”
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Are journalists downplaying the risks of Covid-19 and long Covid?
I often take a look at Neiman Reports, an academic-y but not academic publication about current media issues from Harvard University’s Neiman Foundation. The publication has just published an opinion piece chiding journalists for downplaying the risks of Covid-19, including the risks of prolonged symptoms, especially among certain demographic groups. (Nieman Reports’ tagline is “covering thought leadership in journalism.” Try not to let that snooty-sounding self-description deter you from reading it.)
The author, science reporter Kendra Pierre-Louis, begins her piece with this:
“In December 2020, before the rollout of the Covid-19 vaccine, when many had chosen to celebrate Thanksgiving in groups, which sent Covid cases soaring, The New York Times ran an opinion piece on why we should not shame people who traveled during the holidays. That these individualistic choices were burdening already overtaxed healthcare workers and causing people to die of preventable illnesses because they simply could not access care didn’t merit a mention in the piece.
“This idea that we should not shame people for ignoring Covid recommendations — even when it was costing lives — became pervasive. So much so that in an early 2021 article I wrote for Slate about the social benefits of shame, I noted that, “regardless of how abhorrent a person’s behavior is, apparently the worst thing you can do is shame them for it.”
People may disagree with Pierre-Louis’ perspective, but she makes a cogent case that demographic groups at higher risk—like the elderly and people with co-morbidities—are often treated as afterthoughts in media accounts as well as in how people act in their daily lives. She mentions comments from New York Times columnist David Leonhardt, in early 2022, that people who were vaccinated should be “living your life in a way that reflects that you’ve been vaccinated”—in other words, they should be reconsidering or reducing their reliance on safety protocols like masking.
Here’s Pierre-Louis’ response to that comment:
“What this looks like in practice is a very individualistic approach to public health. If you are at low risk, live your life with only a minimal consideration for those you might be putting at risk. Sure, put on a mask when visiting your grandparents, but don’t worry about someone else’s grandparent when you ride transit without a mask. It’s a perspective that fails to consider the needs of anyone who is perhaps older or who has comorbidities.”
Definitely worth a read.