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.
An interesting question from a reader got me thinking about how, exactly, we track the impacts of Long COVID. Doctors, researchers, and long-haulers themselves have learned a lot about the condition over the last three years. We still don’t have clear estimates of exactly how many people in the U.S. are dealing with this chronic disease, but we’ve come much closer to understanding its impacts than we were when patients first began advocating for themselves in 2020.
On Wednesday, the CDC’s National Center for Health Statistics (NHCS) released a major report on deaths from Long COVID. To identify a small (but significant) number of deaths, NCHS researchers searched through the text of death certificates for Long COVID-related terms. Their study demonstrates how bad our current health data systems are at capturing the results of chronic disease.
I had two new articles about Long COVID published this week. The reporting process for both stories gave me a lot to think about, in considering potential improvements in recording who has Long COVID and how this chronic disease impacts people.
Two new books about Long COVID were published this month, and I’d like to recommend both of them to any readers interested in learning more about the condition—especially to other journalists covering COVID-19.
This week, I had a story published at Kaiser Health News (KHN) about barriers that people with Long COVID are facing as they apply for disability benefits, focusing on programs offered by the federal Social Security Administration. For me, working on this story highlighted the consequences of the U.S.’s poor data collection on Long COVID.
This week, MuckRock (the public records and investigative nonprofit where I work part-time) launched a new project looking at the U.S. government’s response to the Long COVID crisis. We’d like to hear from Long COVID patients and community members who have story ideas.