365 Days of Support
Artwork by Delia Rogers
Dispatches from the support group
Body Politic’s support group exists on Slack where conversations occur in over 70 different topic or community-based channels. See below for a peek at what we’ve been talking about lately…
On March 26, we celebrated the one year anniversary of our support group. Check out this highlight on just *some* of the incredible work our community has accomplished this year.
#first-wave: After much demand, we have set up a channel for people who identify as “first-wavers,” those who were among the first to get sick with COVID-19 in their area or region. So far, users are sharing feelings about coronaversaries, and exchanging theories on whether first-wavers in the U.S. may have received higher viral doses due to lagging CDC guidance on masks and other public health protocols. We are hopeful that this channel will provide a much-needed forum for discussing the experience of getting sick before most people understood the virus, and other issues unique to first-wave infections.
#relapse-and-reinfection: In the relapse and reinfection channel, users describe instances of “symptom relapse,” the feeling of worsened symptoms after a period of alleviated symptoms. This phenomenon is also often categorized as “post-exertional malaise” (PEM), and patients in this channel exchange tips on pacing, which patients report has helped them avoid these relapses. Other users discuss instances of reinfection – some people who became ill in early 2020 report re-testing positive for the virus and/or developing new symptoms after being exposed. In some cases, patients struggle to determine whether new and/or worsened symptoms are a result of “relapses” or reinfection.
#resources-and-tips: This week, users are recommending:
CDC patient toolkits for managing new Myalgic Encephalomyelitis (ME) diagnoses
robot vacuums, so you can rest while a bot cleans your house
“Unrest,” Jennifer Brea’s documentary film about her battle with ME
this article on how employers can better accommodate employees with COVID-19 symptoms
Oura rings for tracking deep sleep (one user recommends buying them used off of eBay to avoid paying full price)
#vaccines: Users continue to share advice on accessing vaccines as a patient population that is not explicitly included in the United States’ criteria for “vulnerable groups.” Patients who are being treated at COVID clinics report that many doctors have been willing to write notes of eligibility. Reports of vaccine reactions continue to be extremely varied, with some users reporting mild or short-term side effects, and others sharing more debilitating symptoms. For some, the vaccine seems to alleviate symptoms, but more data is needed.
#japanese: That’s right! We are now hosting a Japan-based Long COVID support group on Slack. The channel is also open to people in need of a Japanese language support group who are not currently based in Japan.
New on Body Type
Body Type is Body Politic’s mini publication, where we investigate the intersections of health, wellness, and social justice from a patient-centered lens.
Patient Spotlight: People don’t realize how severe it can be
Body Type contributor Delia Rogers interviews college student Jaime Hattori on her experience with COVID-19...
In case you missed it...
Body Politic is in the news!
“Long Covid Is Not Rare. It’s a Health Crisis.”
By Fiona Lowenstein and Hannah Davis
The New York Times
“‘You can’t get away from the idea that you’re just lucky to be alive’”
Featuring Body Politic Treasurer Lauren Nichols on pandemic survivor guilt and Long COVID mental health
Vox
“Long-Haulers Are Pushing the Limits of COVID-19 Vaccines”
Featuring Hannah Davis and the Patient-Led Research Collaborative, along with several Body Politic group members’ vaccine stories
The Atlantic
“Months After Contracting Virus, They Suffer Crippling Effects of ‘Long COVID’”
Michel Martin speaks with Fiona Lowenstein and Hannah Davis about their New York Times op-ed.
NPR: All Things Considered
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Thanks for reading the Body Politic COVID-19 Support Group newsletter. Open to all, this newsletter seeks to provide COVID patient allies, healthcare professionals, journalists, and other interested parties with information on our COVID-19 Support Group. Because the group is currently only open to COVID patients, survivors, and their caregivers — a decision our team made to foster a culture of trust within the online community — many of the amazing insights the group provides have not been shared with the outside world. In this newsletter, we will give you a look inside this robust support group, by summarizing big discussion themes, sharing advocacy updates and links to articles our group found helpful, and including personal anecdotes from group members. Click here to get the newsletter sent directly to your inbox!
For more info on the group, email info@wearebodypolitic.com
For media inquiries, email PR@wearebodypolitic.com
