advocacy
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Los Angeles’ $13M COVID-19 relief funds could go to building upgrades, not Long COVID care
Los Angeles advocates worry that millions in unspent federal pandemic assistance will fund infrastructure projects instead of supporting residents with Long COVID or preventing new infections.
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Illinois could become the first state in the country to ban mask bans. Here’s how we created the bill to do it.
Anti-mask laws are discriminatory and dangerous, and so I and other disability advocates across the country are stepping up to counter criminalizing with codifying: our bills would enshrine the right to mask in public spaces in state law.
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“Millions Missing” protest at the Capitol demands myalgic encephalomyelitis funding, social support
Myalgic encephalomyelitis (ME), Long COVID, and other chronic disease advocates demonstrated outside the Capitol Building in Washington, D.C., this afternoon. Organized by the advocacy group #MEAction, demonstrators demanded that the federal government fund ME research and preserve vital social support systems like Medicaid and telemedicine.
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Minnesota House budget proposes eliminating state Long COVID program
Cuts could end Long COVID research, communications, and grants in Minnesota, which has been a leader in state-level public health responses to the crisis.
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“Long COVID Mode”: Seeing the crisis through games
Games uniquely incorporate emotional and social factors that influence how we take in information — making them surprisingly useful communication tools in a world in denial about the ongoing threats of COVID-19 and Long COVID. Whether through the cathartic storytelling in indie designers’ interactive theater projects or learning opportunities woven into popular video games, playing…
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$11 billion CDC funding cuts may decimate Long COVID response in several states
Long COVID research and communications projects in several states may be forced to shut down or curtail their efforts due to recent Trump administration cuts to public health funding. In these cuts, announced in late March, the Centers for Disease Control and Prevention (CDC) abruptly canceled $11 billion in grants for COVID-19 and public health…
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Lisa McCorkell reflects on five years of Long COVID research, and leaving PLRC
Lisa McCorkell, one of the founders of the Patient-Led Research Collaborative (or PLRC), recently stepped down after five years co-leading the organization. The Sick Times co-founder and managing editor Betsy Ladyzhets spoke with McCorkell in an exit interview. She reflected on her time collaborating on formative Long COVID studies, advocating for federal funding, developing new…
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An international emergency task force is urgently needed for Severe Long COVID and ME crisis cases
Without one, Severe advocates are putting themselves at risk. It’s time for advocacy organizations to step up. Writer’s note: In this essay, I deliberately capitalize different categories of ME in order to give each the weight and dignity they deserve. I also choose to distinguish between the Sick and the Well to highlight our status…
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The history of ME deserves a late-night spotlight. That’s why we started the #JohnVsJonVsME campaign.
In a crisis-filled world, breaking through the noise requires creativity, strategy — and, occasionally, a really good meme. This is precisely why the #JohnVsJonVsME campaign began.
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UPDATE: RECOVER Long COVID pathobiology grants restored
Long COVID research grants from the National Institutes of Health’s RECOVER program will be restored following news stories about their abrupt cancellations and advocacy to restore the funding, according to patient representatives in the initiative.
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