Policy & Advocacy
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Long COVID is significantly underreported across the globe
Long COVID, which has affected more than 400 million people around the world, is often underreported, particularly in low- and middle-income countries (LMICs).
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Alice Wong showed us Disability Justice makes our advocacy stronger
With her #PodSaveJon campaign, she helped deliver one of the Long COVID movement’s best moments.
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“Not a whole lot of substance”: HHS posts Long COVID website, six months after making big promises
New website receives mixed reviews from Long COVID advocates and researchers; some do not expect to see any meaningful support from the Trump administration.
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Austin recognizes Long COVID Awareness Day, events happen around the world
Around the world, people with Long COVID recognized International Long COVID Awareness Day with events, demonstrations, and buildings lit up in teal. Austin, Texas, is the latest city to recognize the day, through a proclamation from the Austin city council — a major step in the state.
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Los Angeles recognizes Long COVID Awareness Day
Local advocates pushed America’s second largest city to formally observe the day on March 15.
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Maryland considers Long COVID innovation bill
Maryland may soon become the first U.S. state to directly support Long COVID research and development. The state’s government is considering a bill that would establish a grant and loan program dedicated to the disease, potentially funding scientists and start-ups based in Maryland.
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HHS hosts event and announces new initiatives for Lyme disease, but advocates are skeptical about follow-through
The Lyme disease roundtable followed a similar event on Long COVID, which still hasn’t led to action on the disease
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“Medically neglected” and “structurally erased”: International network appeals for ME advocate Nevra Elis
This fall, an international group of people known as Team Nevra has led an ongoing campaign to fundraise and help find care for Nevra Elis, an advocate living with severe myalgic encephalomyelitis (ME).
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Doctors who refuse to engage with administrative work are abandoning their poorest and sickest patients
Having a Long COVID or ME doctor who is willing and available to engage with survival admin makes the difference between being able to access necessities and going without, and can be the only lifeline against neglect.
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Leslie Lee III, culture critic and Long COVID advocate, dies at 43
Leslie Lee III, an educator, critic, and Long COVID advocate, died on November 10. He was 43.
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