Policy & Advocacy
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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encephalomyelitis (ME) in 2018, it has frustrated me greatly seeing organizations and especially governments repeating out-of-date statistics related to this disease — minimizing either the apparent number of sufferers (such as the much-repeated 250,000 figure for the number of ME patients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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Now offline: Government resources about Long COVID as a disability
Several government resources about accommodations for people with Long COVID have become unavailable in the last week, following purges of government websites and datasets under the Trump administration. These pages offered crucial information about rights under the Americans with Disabilities Act (ADA) for people with Long COVID and their employers.
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Breaking: Vital Long COVID data taken down following Trump order
A key source of U.S. Long COVID data is now offline following a purge of information related to sexual orientation and gender identity ordered by President Donald Trump’s administration. The Household Pulse Survey, a data collection effort by the U.S. Census and Centers for Disease Control and Prevention (CDC), is among many CDC datasets and…
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RECOVER hasn’t been impacted by Trump freezes so far, sources say. But the program’s future is still uncertain.
As scientists across the country face confusion and uncertainty following drastic changes at the National Institutes of Health (NIH) under President Donald Trump, the agency’s flagship Long COVID research program is continuing its existing work as usual. But future studies could be delayed or interrupted and prospects for additional funding are unclear under Trump’s leadership.
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Some U.S. COVID-19 data are down amid “pause” to federal health communications
The U.S. government has stopped updating some of its public COVID-19 data, as part of a “pause” to public federal health communications under President Donald Trump. While federal officials have not formally announced any details, the Centers for Disease Control and Prevention (CDC) has missed scheduled updates to some infectious disease dashboards this week. A…
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Long COVID is a smoldering threat to wildland firefighters
Editor’s note: This story was originally published in October 2022 by High Country News and was supported by The Economic Hardship Reporting Project. Researchers found that particulate matter from wildfires can increase risk of COVID-19 and that wildland firefighters may be at a higher risk of developing Long COVID due to a variety of factors.…
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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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COVID-19 advocates are distributing masks to protect Californians from wildfire smoke
As the skies of Los Angeles filled with smoke this week from multiple raging wildfires, many residents quickly recognized failures in local and state governments’ ability to protect them from hazardous air pollution. Community members from local COVID-19 advocacy and mutual aid groups stepped in to fill this gap, providing stockpiled respirators and information about…
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