Policy & Advocacy
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#MEAction launches campaign to educate healthcare providers about Myalgic Encephalomyelitis
#MEAction, the nonprofit organization advocating for people with myalgic encephalomyelitis (ME), has launched a campaign to educate healthcare providers about the disease, collaborating with medical schools across the U.S. The education campaign, called “Teach ME, Treat ME,” kicked off last week in time with #MillionsMissing 2024, an outreach event for ME that takes place in…
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Sen. Bernie Sanders seeks feedback on $10 billion “moonshot” for Long Covid
Last week, Senator Bernie Sanders proposed a “moonshot” for Long Covid, which would allocate one billion dollars a year for the next 10 years to mandatory research into the disease. The Senator and the United Senate Committee on Health, Education, Labor, and Pensions (HELP) are currently seeking email feedback on a draft of this legislation,…
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Photo essay: Long Covid advocates gather in DC for demonstration
On Friday, March 15, 2024 people with Long Covid and their allies gathered in front of the Lincoln Memorial in Washington D.C. for the Long Covid D.C. (LCDC) march to commemorate Long Covid Awareness Day.
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Sen. Bernie Sanders introduces resolution to formalize Long Covid Awareness Day
Today Senator Bernie Sanders and the Covid-19 Longhauler Advocacy Project (C19LAP) announced a resolution to formally designate March 15 as Long Covid Awareness Day. “This resolution is a major step in letting the Long Covid community know that we are not being left behind, that we are seen, that Long Covid is real, and that…
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How mask blocs are keeping communities safe with neglected government stockpiles
To supply plentiful, free masks to anyone who requests them, mask bloc members track down large quantities of quality masks being sold cheaply or offered for free. In this way, Covid-19 safety groups and mask blocs essentially function as narrow supply chains in specific regions, with bloc members focusing on distribution as well as acquisition.…
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It’s “all hands on deck” for Long Covid Awareness Day as the CDC ignores Long Covid in new guidance
People with Long Covid (pwLC), advocates, and their allies from around the world are organizing in preparation of the second annual Long Covid Awareness Day, following similar grassroots advocacy efforts in March 2023. This year’s Awareness Day, pwLC plan to highlight the urgency of the Long Covid crisis and the impacts of the ongoing Covid-19…
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Q&A: Dr. Ian Simon on his plans for the HHS Office of Long Covid Research and Practice
Last month, Dr. Ian Simon became the inaugural director of the U.S. Office of Long Covid Research and Practice, an office under the Department of Health and Human Services that aims to coordinate Long Covid efforts across the federal government. Betsy Ladyzhets spoke to Dr. Simon about his prior experience, his work at the Long…
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A win for healthcare workers and patients: The CDC returns HICPAC’s draft recommendations on infection control
Last summer, the federal Healthcare Infection Control Practices Advisory Committee (HICPAC) began meeting to update their guidance on infection control in healthcare settings for the first time in sixteen years. The committee’s draft recommendations, released in November, argue that surgical masks are adequate protection against airborne viruses, and allow employers to decide whether to implement…
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Senate hearing highlights Long Covid crisis — but not Covid-19 prevention — while advocacy groups bring their demands to DC
On January 18, the Senate Committee on Health, Education, Labor, & Pensions (HELP) convened a hearing about Long Covid, discussing research priorities and healthcare challenges for the disease. Senators heard from people with Long Covid and scientists studying it in front of a packed room full of Long Covid advocates and allies, along with thousands…
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Social media users ask, “Where is Mandy?” as CDC director stays out of spotlight during Covid surge
Despite what might be the second biggest surge of the entire pandemic, CDC director Mandy Cohen has been absent from her official CDC social media accounts. Similarly, the CDC has yet to issue any press releases or public service announcements specifically about the JN.1 surge, which may be infecting over one million Americans each day…
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