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"We ignored AIDS. Let’s not repeat the mistake on long COVID"

https://www.nj.com/opinion/2024/03/we-ignored-aids-lets-not-repeat-the-mistake-on-long-covid-editorial.html "In the earliest days of the AIDS crisis, America ignored the problem, even though people were dropping dead by the thousands.

We’re repeating the mistake now with long COVID. Millions are suffering, but the government has largely turned its back, as new cases emerge with each passing wave.

So people are coming from all over the country this week to Washington D.C., in the footsteps of AIDS activists, to protest at the Lincoln Memorial on March 15th. They’re desperate for their stories to be heard."..

"Even for those who improve and can walk a whole block, or a mile, one reinfection could land them right back to being housebound, says Dara York, a co-organizer with long COVID. “What we’re seeing is just tons of young people giving up,” she says. “They’re losing hope.”

"Like many with long COVID, York initially hardly spoke about her illness, even to friends, because of the stigma. It’s often dismissed as not serious or, worse, not real.

“If I asked them to put on an N95 mask to have a visit with me, or to take a test first, they won’t understand because they’ve been told it’s mild for most people,” she says.

A former avid hiker, she’s been mostly bedbound for the past two years since one of her kids brought home the virus in 2021. She was severely disabled by lingering symptoms, even though she was fully vaxed – and recently had a stroke at the age of 44, only weeks after getting COVID for the fifth time.

“It’s just spreading out of control,” she says. “So, it doesn’t matter that when I go out, I wear an N95. When people in a big household live together, if everybody is not doing the same thing, people are exposed.”"

Article. "The grassroots group LC/DC is holding a demonstration March 15 at Washington's Lincoln Memorial, calling for, among other things, officials to speed up research for a cure."

Article. "A protest will also be happening in D.C. on March 15, opposing this decision and asking for more support and action on long Covid."

Article. “[The CDC’s] new guidance will result in more illness, disability, and death,” said Paul Hennessy, one of the organizers of Long Covid D.C. (LC/DC), a grassroots group that is planning a respirator-required demonstration at the Lincoln Memorial in Washington D.C. on March 15. “Mandy Cohen herself said that her mission was to rebuild trust in the CDC, but you don’t rebuild trust by ignoring hard truths of what this virus is capable of.”

Dara York, a co-organizer for the demonstration, said that she hopes it will empower patients to share their experiences with the disease, especially in the face of the CDC’s abandonment of pwLC. The event will be live-streamed from home for those unable to attend in person. York, a nurse who has Long Covid, has been organizing the demonstration from her home despite recently experiencing a stroke during a reinfection with Covid-19. “Reinfections are dangerous,” she said, explaining that she hopes to spread awareness about the risk of reinfections in people with and without Long Covid. "

Article. On March 15, a demonstration is planned at Lincoln Memorial to raise awareness and urge greater funding, preventative measures, research, and treatment strategies.

Article. "LC/DC is fighting to raise awareness about long COVID, and we recognize that reducing the isolation policy will result in more infections, long-term illnesses and disability," said Paul Hennessy, one of the three main organizers of the planned event.

"The CDC has admitted that COVID can be contagious for over 10 days."

Hennessey added, "The CDC’s job should not be to negotiate with a deadly airborne pathogen, but to give the best proper guidance."

"Dara York, a San Francisco-based nurse who has long COVID and is one of the event's organizers, told Fox News Digital that she believes the CDC is "abandoning" the problems related to COVID.

"Reinfections are dangerous," she said. "There is silent damage in many people. Most don't even know their symptoms could be long COVID. Doctors and medical staff need training for [the condition]."

"Our ultimate goals are to raise awareness for long COVID and stress the urgent need for prevention, education and treatments," said Hennessy.