Long COVID patients, I want to hear from you for a new reporting project

Some parts of the country have very limited options for Long COVID care. (See the Science News article for an interactive version of this map.) Medical access is one of many issues I’d like to look at in a new reporting project.

As regular readers of this newsletter will know, I’ve done a lot of reporting on Long COVID in the last year. This has ranged from the source list database I put together with Fiona Lowenstein, to feature stories about Long COVID research and patient mental health.

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. I’m hoping that the project will build on previous work that I’ve done in this area, connecting the dots between different aspects of the crisis—with a focus on government accountability.

As a first step for the project, we’ve put together an AirTable form where Long COVID patients, advocates, caregivers, researchers, and others connected to this condition can share their experiences and story tips. If you’re part of the Long COVID community, please consider filling it out! The form is pretty short (just two required questions) and information you share won’t be used for publication without permission.

MuckRock is also looking for other newsrooms that might want to collaborate on this project. If you’re a journalist who’s interested, please reach out to me at betsy@muckrock.com.

One topic that I’m hoping to dig into more is gaps in access to healthcare for Long COVID. A data project I did for Science News, published this week, shows that clinics dedicated to this condition are generally concentrated in big cities, particularly on the East coast. Yet many of the places with the highest Long COVID prevalence are rural areas in the South and Midwest, according to the Household Pulse survey.

This story shows just one small aspect of the barriers facing Long COVID patients trying to access the care they need. If you have more information to share about this issue, or anything else related to services needed for Long COVID, please consider filling out MuckRock’s callout form.

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More Long COVID data

Sources and updates, November 27
Sources and updates for the week of November 27 include more data on bivalent booster shots, Long COVID research, and more.
Long COVID book recommendations
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.
How data gaps contribute to financial challenges for people with Long COVID
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 …
Sources and updates, October 16
Sources and updates for the week of October 16 include a new paper on the U.S.'s data failures, indoor air quality measures from the federal government, testing out of isolation, and more.
Sources and updates, October 9
Sources and updates for the week of October 9 include new Long COVID data, updates on RECOVER, Paxlovid utilization, and more.
Sources and updates, September 25
Sources and updates for the week of September 25 include new booster shot data, CDC funding for COVID-19 testing and genomic surveillance, Long COVID studies, and more.

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