RECOVER, the U.S.’s largest initiative to understand Long COVID, published a major scientific study this week in JAMA. The paper goes over key Long COVID symptoms and other findings from nearly 10,000 adults who have joined the project’s research cohort. Its authors propose a new, more specific definition for Long COVID, which will be used in future studies from this project.
In December 2020, Congress gave the National Institutes of Health $1.2 billion to study Long COVID. But it’s been more than two years, and the RECOVER initiative doesn’t have much to show for that money—besides a growing number of frustrated people in the Long COVID community.
It’s an unfortunate reality in the Long COVID media landscape that a lot of journalists and commentators write about this condition without really doing their research. Two recent stories (one in the Washington Post and one in Slate) make mistakes and spread misinformation, in fairly high-profile outlets.
I have a new story out in National Geographic this week about a growing area of research connecting the gut microbiome—the diverse community of microorganisms that live in our digestive systems—with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the chronic disease that often occurs after viral infection and has many commonalities with Long COVID. For the story, I talked to Tamara Romanuk and Tess Falor, patient-researchers whose Remission Biome project seeks to understand this connection and push towards potential treatments.
On Friday, I led a workshop at NICAR about covering Long COVID. NICAR is a data journalism conference, so my session focused on data sources, along with suggestions for public records requests and for interviewing long-haulers.