Policy & Advocacy
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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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RECOVER grants for Long COVID pathobiology research are among those cut under new NIH directive
Some grants for Long COVID pathobiology research in the National Institutes of Health’s RECOVER program are among those rescinded by the federal government this week under a new order to cut all funding for COVID-related research. Up to 45 grants awarded in 2022 and 2023 may have been revoked, as well as more recent grants…
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Trump administration set to abolish the Office of Long COVID Research and Practice
The Trump administration is set to dismantle the federal government’s Office of Long COVID Research and Practice (OLC) this week as part of a larger restructuring of health agencies, sources have told The Sick Times. This news, also reported by POLITICO and the Substack Inside Medicine, represents another blow among several moves this administration has…
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Live blog: International demonstrations ignite for Long COVID Awareness Day
Demonstrations for International Long COVID Awareness Day have sparked around the globe. Whether raising awareness about the disease in public or from their homes, people with Long COVID and their allies have raised their voices to demand recognition, research, treatments, support, and prevention of COVID-19 during the ongoing pandemic, as many in the community observe…
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Our community came together to start International Long COVID Awareness Day in 2023. Here’s how you can get involved this year.
March 15, 2025 marks the third annual observance of Long COVID Awareness Day. Efforts organized around the day educate the public on Long COVID, and put pressure on governments, policymakers, public health officials, and healthcare workers to take action on the disease.
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Accurate statistics for ME and Long COVID are vital. That’s why I started a patient-led organization to “crunch” the diseases.
Since falling ill with myalgic encephalomyelitis (ME) in 2018, it has frustrated me greatly seeing organizations and especially governments repeating out-of-date statistics related to this disease — minimizing either the apparent number of sufferers (such as the much-repeated 250,000 figure for the number of ME patients in the UK) or our degree of suffering.
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Federal workers with Long COVID face firings, loss of accommodations, and more challenges under Trump
Many federal government employees with Long COVID and other chronic diseases and disabilities are deeply concerned about their future under the Trump administration. The Sick Times spoke to several federal workers with Long COVID who have been part of mass firings, have faced new challenges receiving work accommodations, and have been asked to do work…
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Trump commands HHS to terminate advisory committee on Long COVID
Listen to Miles discuss this story on our podcast: A new executive order from the Trump Administration commands the Department of Health and Human Services (HHS) to terminate the Secretary’s Advisory Committee on Long COVID. The order, “Commencing the reduction of the federal bureaucracy,” was issued late on Wednesday, February 19, and included the termination…
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