COVID source shout-out: Patient-Led Research Collaborative

In this final newsletter, I wanted to highlight one of my favorite sources for new research on COVID-19 and Long COVID (and one that published a new paper recently): the Patient-Led Research Collaborative (PLRC). PLRC is a group of people with Long COVID and related chronic diseases, such as ME/CFS and POTS, who also have scientific research experience.

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COVID source callout: Lack of transparency from CDC committee

Last week, I shared an update about the Healthcare Infection Control Practices Advisory Committee (HICPAC), a group of advisors to the CDC that has been working on updated guidelines for limiting infectious disease spread in healthcare settings. The committee has faced criticism for failing to incorporate lessons from COVID-19 into its guidance, as well as for a lack of transparency in its operations. The transparency issues continued this week, according to a press release by National Nurses United (NNU).

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COVID source shout-out: Organizing for safety in healthcare settings

As outside health experts and advocates push HICPAC to consider improving mask standards, ventilation, and related guidance in healthcare settings, one group has led the advocacy effort: National Nurses United (NNU). NNU’s organizing efforts around the HICPAC guidance have included a number of letters and petitions to the CDC, organizing speakers at the public comment sections of HICPAC meetings, and pushing for greater transparency around how the committee makes decisions.

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COVID source shout-out: Biobot’s dashboard is still sharing COVID-19 data

Two weeks ago I wrote an article explaining that the CDC has a new wastewater contract, essentially transferring responsibility for COVID-19 testing at hundreds of wastewater treatment plants across the country from Biobot Analytics to a company called Verily, which is affiliated with Google. In the time since that post, I have seen some other articles and social media posts alleging that, thanks to the contract change, Biobot will no longer be posting any COVID-19 data on their dashboard. This is inaccurate! 

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COVID source shout-out: Diagnosing and managing ME/CFS

Despite impacting millions of people prior to the pandemic, ME/CFS is not well studied; research into the condition is underfunded, and doctors typically don’t learn about it during their training. A new paper from the Rochester Mayo Clinic and ME Action, a ME/CFS advocacy group, may help change this, by offering guidelines for doctors who have patients with this condition.

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COVID source callout: You can’t search for COVID-19 information on Threads

Threads, the new text-based social media platform from Meta (the parent company of Facebook and Instagram), has blocked users from searching about COVID-19 or Long COVID. The block is a harmful choice by Meta, which will make it difficult for health experts, people with Long COVID, and other seeking information to find each other on this platform.

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