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 their input into its $1.15 billion study, RECOVER.
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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 fact, experts and long-haulers are disappointed by the trials, I learned when covering this news for MuckRock and STAT News.
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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.
Read MoreSources and updates for the week of May 14 include new CDC ventilation guidance, a Long COVID and ME/CFS demonstration, COVID-19 test prices, and more.
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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.
Read MoreSources and updates for the week of April 9 include Omicron boosters, federal Long COVID progress, ventilation improvements in K-12 schools, and more.
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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.
Read MoreSources and updates for the week of November 6 include Omicron bivalent boosters, a Long COVID clinical trial, an RSV vaccine, and more.
Read MoreSources and updates for the week of October 9 include new Long COVID data, updates on RECOVER, Paxlovid utilization, and more.
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Over a year after the NIH received $1 billion to study Long COVID, the agency’s flagship study is floundering and frustrating patient advocates. Here are five reasons why Long COVID research is tough in the U.S., taken from my reporting for a recent Grid story.
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