Our Slack support group permanently shut down May 2023 due to lack of funding. Below are support group options for Long COVID that was prepared and vetted by our team. Every group listed below is patient-led or a strong ally of patient-led groups, and was vetted personally by our team for appropriate moderation practices and group policies, as well as quality Long COVID information access. We recommend downloading and viewing the PDF, as the title and QR code of each organization listed links directly to their support group sign-up page for ease of access.
A brief history of our support group: When members of our team fell ill with Covid-19 in March 2020 we launched the Body Politic Covid-19 Support Group for patients and caregivers. Our group then grew to include 15k+ members with over 30k requests to join, and birthed grassroots initiatives such as Long COVID SOS and the Patient-Led Research Collaborative, among other Covid-19 patient advocacy campaigns. Our community provided people who have had COVID-19 with emotional support from peers, resources and education, community, and opportunities to participate in media and advocacy.
FAQ
+ I'm a patient, how do I join the group the support group?
The original Slack COVID-19 support group shut down May 2023. We were so sad to have shut the doors on our Slack group, but unfortunately had no choice as we were not able to secure adequate funding. If you want to read more about our decision to shut down, you can read more on our previous Body Type posts.
+ Is there a new support group because the Slack group shut down?
We offer a guide to support group options on our resources page! that is also listed above, so you can look for a community that is right for your needs and preferences. (We recommend downloading the PDF there to view it, as the title and QR code of each group links directly to each group's support group sign-up page, which can sometimes be hard to find!) As it says on the guide, we encourage people to join multiple groups and hang out in the space to find which one fits your needs and preferences.
We also recommend folks check out our past events and resources page for educational resources on Long COVID.
+ What was the Body Politic COVID-19 Support Group, and how did it form?
Body Politic started the COVID-19 support group after founder Fiona Lowenstein, and board member Sabrina Bleich became sick with coronavirus in early March. After falling ill, they quickly realized that there were not enough online content or resources dedicated to people struggling with coronavirus. As they scrolled through Instagram feeds filled with tips on navigating boredom during quarantine, or how not to catch the virus, they felt increasingly isolated, misunderstood, and ignored. With news of infection rates rising, they knew a community of people like themselves existed, and was growing - they just needed a way to reach each other.
Fiona and Sabrina launched the Body Politic COVID-19 support group on March 26 in a small Instagram group chat. After Fiona wrote their New York Times op-ed about Long COVID in April 2020, sign-ups for the group exploded and they moved to WhatsApp and then Slack to accommodate the rapid growth. During those early days, while Fiona and Sabrina were still navigating acute physical symptoms, their incredible board member, Lida Rubanava, stepped in to help develop the group. In the weeks, months, and years that followed, our team grew to include dozens of other Covid-19 long-haulers and people with post-infectious diseases who graciously volunteered their time to run our online community for the first three years. In those three years, we fielded over 30k requests to join the Slack group, and our Slack community grew to over 14k people with 70+ channels, where we incubated groups like the Patient-Led Research Collaborative and Long COVID SOS. The team at Body Politic attempted to fundraise to sustain our peer support community in Slack, but we were not able to secure the funding necessary for the significant labor needed to operate our high quality peer support discussion space on Slack and were forced to shut it down in May of 2023.
+ How can I help, if I’m outside the COVID-19 community?
Here are a few ways to get involved:
Request to join our Ally Support Network. We are especially interested in hearing from healthcare providers, wellness practitioners, lawyers, activists, and others with relevant experience in healthcare, chronic illness and disabilities, health justice, and emerging infectious diseases.
If you are a researcher who wants to share your study or partner with us, please reach out to info@wearebodypolitic.com. We will review survey submissions and research opportunities to share with the support group as appropriate.
Are you affiliated with a company or non-profit that can support this work in some way? For more information on partnerships, email info@wearebodypolitic.com with a short description of your organization or brand and how you would like to collaborate.
Provide a discounted service to our community. Are you a therapist, yoga teacher, medical professional, chef, or someone who provides a service that you think would be helpful for our community of sick and recovering people? Email info@wearebodypolitic.com and we’ll determine if it’s a good fit to share.
If you are a reporter, please see our Press page, where we have a press inquiry form that immediately posts to our support group to give the quickest way to get your inquiry to our community. You can also reach out to PR@wearebodypolitic.com. The support group is a private space for patients and caregivers only.
