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The sick soft butch who did: How confronting a racist in my neighborhood helped me claim my Long COVID identity
The last thing I thought before I smashed, face first, into the New York City sidewalk, was, Dang, my wife’s going to want me to start taking my cane with me everywhere I go. But mostly, I was worried one of my neighbors would watch me tumble over and go limp.
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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.Â
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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encephalomyelitis (ME) in 2018, it has frustrated me greatly seeing organizations and especially governments repeating out-of-date statistics related to this disease — minimizing either the apparent number of sufferers (such as the much-repeated 250,000 figure for the number of ME patients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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Half a decade of Long COVID
Looking back on half a decade, there have been numerous milestones in Long COVID research, advocacy, and greater societal awareness, many led by people with the disease. There has also been, and continues to be, a lot of loss.
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The Long COVID unicorn: How I lost faith in my leftist political party
During a Zoom meeting with a member of my local Green Party, I asked to give an in-person speech about the COVID-19 policy and my own experiences. I was excited to give my speech about Long COVID. I thought I would be speaking to a friendly crowd who understood the threat of COVID-19, but I…
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Invivyd Chairman Marc Elia: The bureaucracy is killing people with Long COVID
The Biden administration failed to prioritize innovative solutions that could alleviate or prevent the worsening of this crisis. Instead, they relied on short-acting, marginally-effective COVID-19 vaccines while restricting the development and availability of new medicines that could dramatically change health outcomes for millions.
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My husband and I have both had ME for decades, then our son got Long COVID
When our seventeen-year-old son Nick developed Long COVID after suffering a pulmonary haemorrhage in 2022, like any parents, we were devastated. But for us it hit harder. History was repeating itself — and it was something we had dreaded since having children.
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As someone with Long COVID, I’m terrified of what could happen to the Affordable Care Act
Based on my past experiences, I fear that many Americans – including myself – may soon be deprived of the accessible, affordable healthcare we desperately need. Listen to Bobbi Dempsey discuss this essay on our podcast (timestamp: 14:20): It’s not an exaggeration to say that the Affordable Care Act (ACA) saved my life. Nearly 15…
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Instead of supporting people with Long COVID, our government funds a genocide
My final rejection for disability benefits was sent to me in March 2024, during Israel’s horrific, ongoing genocide in Gaza. Before becoming disabled with Long COVID, I worked full-time in the movement for Palestinian liberation. My father is Palestinian, born in the Old City of Jerusalem, and I grew up with stories about the steadfast…
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My Mom was disabled by ME, but I didn’t understand until I developed Long COVID. I wrote an apology letter to her.
Dear Mom, Thirty years later, I finally understand. Do you remember the year 1994? You got sick when I was a child, and you weren’t ever the same again. At first, it was a cough and congestion But as days gathered into weeks, you spent more time in bed Why are you so tired, I…
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