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.

More Long COVID data

Sources and updates, September 10
Sources and updates for the week of September 10 include monoclonal antibody costs, viral persistence in Long COVID, and Medicaid unwinding.
Sources and updates, September 3
Sources and updates for the week of September 3 include a new CDC updates page, Long COVID research, and people who are more vulnerable to severe COVID-19.
Sources and updates, August 27
Sources and updates for the week of August 27 include funding from Project Next Gen, wastewater testing for more viruses, health misinformation, and more.
The NIH says it “inappropriately” censored Long COVID patients on social media
The National Institute of Health (NIH) is under fire for censoring comments from patients on social media — the latest in a trend of heavy criticism from people living with Long COVID for failing to listen to patients and implement …
Sources and updates, August 13
Sources and updates for the week of August 13 include Long COVID rates, vaccination benefits, and a wastewater surveillance webinar.
NIH RECOVER’s Long COVID trials unlikely to lead to successful treatments, experts say
Last week, the National Institutes of Health and Duke University announced five Long COVID clinical trials as part of the NIH’s RECOVER initiative. This might sound like an exciting milestone for the millions of people dealing with long-term symptoms—but in …

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