Friday, November 8, 2024
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Being immunocompromised isolated them during COVID. This website is helping

As a teenager, Greg, who is being identified by his first name for privacy, was diagnosed with an autoimmune condition and, when it flared up again, his parents insisted he live with them.

“My family is extremely supportive. They’re basically my full-time caretakers. [It’s] not the way I envisioned my life, especially going into my 30s, but it is the reality of chronic illness,” he says.  

Recently, Greg, who can’t work and lives with extreme pain and exhaustion due to his condition, learned about the website COVID Meetups. It’s a free service for anyone in the world who wants to socialize in a COVID-safe way. So far, it’s amassed almost 7,000 members across 63 countries, though the majority (68%) of its users live in the U.S.

For people like Greg, the site is a lifeline.

This environment allows for safe socialization, which is especially important for people who are immunocompromised because they are more  likely to get very sick if infected with COVID. Vaccines also aren’t guaranteed to create enough—or any antibodies against COVID, like they do for healthy people. 

Adding to this sober reality, is the fact that as the virus mutates, COVID protections for immunocompromised people are dwindling.

For example, the FDA revoked the use of monoclonal antibody treatments for COVID, which have helped high-risk people fight off the virus and avoid death. Evusheld (which can help prevent COVID in immunocompromised people) is also being blunted by the new variants

Since governmental mandates to protect against the virus have largely disappeared, many immunocompromised people have to choose between risking their health in the outside world or staying isolated.  

“For somebody who’s immunocompromised, COVID can be a death sentence or [result in] hospitalization for days, weeks, or months,” Greg says.  

While members can meet in person, Greg has only done that once. He met up with someone from the site in a park. Because it was outdoors and they were far enough apart, they both felt safe not wearing masks. 

But, because of the danger COVID poses to him, Greg usually plays Cards Against Humanity with other members, exchanges messages, and attends group meetings that give people the opportunity to talk about how the pandemic is impacting their lives. 

While many of the people who have attended the group are immunocompromised, not all are. This is one of the hallmarks of COVID Meetups—it brings together people who are united in the goal of avoiding being infected or re-infected with COVID.   

A middle ground

COVID Meetups founders Debashish and Emily Shaw, both software developers based in Switzerland, wanted to give their young child the chance to socialize with COVID precautions. Emily, who built most of the site, says it offers a middle ground between isolating and taking risks. 

Since COVID Meetups launched in late December 2021, it’s attracted parents like the Shaws, along with COVID long haulers, immunocompromised people, and those who continue to take precautions against COVID.  

“We get messages all the time from people saying ‘this [the site] is wonderful,’” says Debashish. 

Eric Feigl-Ding, an epidemiologist who warned the world in January 2020 about COVID and co–founder of the World Health Network (which owns and operates Covid Meetups), says he thinks the site will exist “as long as long COVID is a clear and present danger.”

Hope and connection

Like Greg, Susanna Speier has found a sense of community with COVID Meetups. She’s immunocompromised because of the medicine she takes to manage her Crohn’s disease. 

Since joining, Speier regularly emails and texts a new friend from the site (who’s not immunocompromised) who she met in person once outside. They also tell each other about local events with COVID precautions. 

“This connection really was a gift of the platform since having similar COVID-safe practices doesn’t necessarily translate to friendship and in this case it did,” she says.  

Recently, another member reached out to Speier because he started a group on COVID Meetups for people in Colorado, where she lives. Speier’s excited about this new connection because they might collaborate together on a work project. But more than the professional opportunity, is the fact that she won’t have to put energy into convincing him—or the group—to take COVID precautions.

The Colorado group now has 40 members and they’ve traded messages on people to follow on social media to keep up with COVID developments, shared resources on COVID-safe places in Colorado, and have had a few online meetings. While COVID Meetups is not a perfect site (some members have complained about the limits of its chat functionality and not being able to host video meetings), it’s given people like Greg and Speier hope and connection. 

“You can have a really fun and inspiring life with people who are COVID safe,” says Speier.  

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