Policy & Advocacy
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“Don’t give up hope”: Long COVID advocates and researchers say crucial work will continue under Trump
As incoming President Donald Trump has announced a growing list of top nominees who’ve denied science and public health, people with Long COVID are preparing for an administration likely to be less friendly for research and advocacy. Along with Trump in power, Republican majorities in the House and Senate may lead to reduced funding for…
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Advocacy groups suspend ties with U.K. charity The ME Association over chairman’s op-ed
Earlier this month, the chairman of the United Kingdom charity the ME Association, Neil Riley, published a controversial op-ed in the charity’s magazine arguing that many people with Myalgic Encephalomyelitis (ME) should increase their movement, counter to research and people’s lived experiences. People with the disease say Riley belittled the reality of severe ME and made…
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We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride
How can people with energy-limiting conditions march for our rights if we have negligible physical capability and exertion worsens our symptoms? My colleague Mlindeni Gabela and I are pioneering a new kind of protest in South Africa: SICK Pride. SICK stands for the Society for the Inclusion of Chronic Knowledge, which we feel is a…
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A brief, oral history of mask blocs: Part 3
U.S. government officials began introducing mask ban proposals and legislation during the summer and fall of 2024, despite the ongoing COVID-19 pandemic that has killed at least 40,000 Americans this year. Mask blocs in impacted regions were sometimes the only groups poised or willing to respond. In this final piece of a three-part series, mask…
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Kamala Harris responds to voter with Long COVID
Last night during a town hall with the Spanish-language news network Univision, Vice President and presidential nominee Kamala Harris received a question from a person with Long COVID who applied for Social Security Disability Insurance (SSDI) three years ago and still hasn’t received a decision on her case. Martha, who is 62, had a heart…
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A brief, oral history of mask blocs: Part 2
Established mask blocs — mutual aid groups distributing high-quality respirator masks for free — often support newer blocs with educational materials or mask stock to get started. In part two of our three-part series, organizers describe how they created resources for other blocs to get started, including a collaborative, in-depth zine co-authored by bloc members…
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Tinu Abayomi-Paul, writer, disability advocate, and person with Long COVID, dies at 52
Atinuke “Tinu” Abayomi-Paul, a prominent writer and disability advocate, died on September 26 at home in Texas. She was 52. Abayomi-Paul was well known in the Long COVID and disability community for her writing, speaking, and mutual aid organizing. She was the founder of Everywhere Accessible, an advocacy organization which she launched in 2019 to…
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Millions of Americans have Long COVID. Will Kamala Harris acknowledge them?
Advocates say that people with Long COVID, a potentially debilitating chronic disease that can impact all parts of the body, represent a growing voting bloc in this year’s presidential election. Leaders from Long COVID advocacy groups and the broader disability community are considering how to make their case to Harris’ staff, with a particular interest…
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A brief, oral history of mask blocs: Part 1
Mask blocs are grassroots mutual aid groups that distribute high-quality masks, such as N95s, for free in response to public health failures during the ongoing COVID-19 pandemic. Many were created and are led by disabled people, many of whom had little or no prior organizing experience. Many include organizers who have Long COVID. Most of…
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“Perfect storm” of criminalization: Analyzing mask bans
While the conversation around mask bans has focused on new laws and bills, 21 states and many municipalities have laws banning masks and/or disguises in different settings, which is more than other organizations have reported. Even where these bans have apparent limitations or exemptions, the finer language of the laws leaves all COVID-conscious people vulnerable.…
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