advocacy
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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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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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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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Immune system damage from COVID-19 is different from HIV/AIDS — but the advocacy has parallels
Lymphopenia is a health condition in which people have low white blood cell count in their blood. Without these cells, the body is unable to defend itself effectively against pathogens. Lymphopenia is one type of way your body can be immunocompromised; it can be caused by many things, including infections, inherited conditions, autoimmune disorders, and…
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