We can’t stop talking about vaccines...
Artwork by Delia Rogers
How Does the Vaccine Affect People with Long COVID?
There’s one question that keeps popping up over and over again on Body Politic’s COVID-19 Support Group Slack channels, in Twitter and Instagram conversations, and in advocacy meetings with outside institutions and organizations: how will the COVID vaccine impact people with Long COVID? Thus far, it's been difficult to crowdsource the answer to this question, since vaccine roll-out is still quite delayed, and a majority of Long COVID patients do not yet qualify for the vaccine — but early reports from patients in our group differ greatly.
Some Long COVID patients report feeling sicker after getting vaccinated(either temporarily, or long-term), a response which makes some sense, given the (mostly mild) side-effects we know can occur in the general population after vaccination. Other Long COVID patients report feeling much better after getting the vaccine. Some even say they feel “cured” of their Long COVID symptoms! Others say they didn’t notice a significant change after vaccination.
In our new #vaccines channel, patients who have received the vaccine report their experiences, and users encourage one another to reserve judgment when responding to one another’s decisions regarding the vaccine. There is widespread consensus on the need for more public health protocols and research that addresses Long COVID patients’ diverse responses to the vaccine, and Body Politic is working to further this advocacy goal. We want to make sure COVID patients and survivors are not left out of the vaccine conversation, especially since people with Long COVID and other disabilities often have to choose between exposing themselves to the virus or forgoing important medical appointments.
The Latest in Long COVID News...
🦠 Clinicians are listening…
On January 28, the Centers for Disease Control (CDC) held a workshop for clinicians on treating Long COVID, in which doctors shared experiences and advice. The workshop focused on the pulmonary, neurological, and psychological impacts of Long COVID, and discussed emerging Long COVID clinics. We were pleased that the presenters emphasized the existence of persistent symptoms in non-hospitalized patients, and the need for empathy toward Long COVID patients. Body Politic board member and admin, Alison Sbrana, attended and live-tweeted the event — check out her summary here!
For more information from the CDC follow this link: https://emergency.cdc.gov/coca/calls/2021/callinfo_012821.asp.
🦠 Just how rare is Long COVID?
On January 21, the Office for National Statistics in the UK released new Long COVID prevalence estimates by age and gender, based on patients who had tested positive for the virus and were still sick five weeks after their positive test. The figures show that people who contract COVID could have a one in four chance of continued symptoms after five weeks, and demonstrate the impact on people of all ages.
🦠 How are “recovered” cases counted?
For months, Body Politic has been concerned about reported numbers of “recovered” patients, since these numbers are often based on PCR test results, and we know many COVID patients never test positive (and are thus never counted amongst those initially infected), and/or continue to experience symptoms long after re-testing as negative for COVID. In a welcome move, The Atlantic’s COVID tracking project recently announced it would stop reporting recovery figures for the U.S. and remove the majority of the state-level “recovered” values from their website, citing inaccurate data on recovery and the need to acknowledge Long COVID symptoms. We hope other data trackers will follow their lead.
Dispatch from the Support Group
Moderator Spotlight
Body Politic’s COVID-19 support group is managed by a group of volunteer moderators, who also utilize the group as members and Long COVID patients. Meet one of our new moderators, Rabia Jaffar...
NAME: Rabia Jaffar
LOCATION: South Africa
Where are you currently living?
I was in South Africa when I was infected with COVID back in March 2020. Due to ongoing issues with Long COVID and pandemic restrictions, I’ve been unable to return to Canada since then.
What is your professional background?
I was a teacher for years in Toronto, Canada and then went international, teaching Math and Social Studies at American International schools in China and South Africa. I decided to quit teaching in mid-2019 to become a nomad and travel the world.
How long have you been a member of Body Politic's COVID-19 Support Group?
I joined the BP group back in April after a friend told me about a NY Times article she’d seen that was about a group of people who were experiencing similar ongoing symptoms and frustrations related to COVID.
Why did you want to become a moderator for the group?
Since I am mostly resting and isolating, I have the time (and recently more energy) to start giving back. Knowing how busy our admins are, and their involvement in advocacy campaigning, I wanted to help as well. Relieving some of the time pressures needed for moderating seemed like a good place to start.
What is your Slack handle / where can patients reach you in the group?
My handle is Rabia (Moderator-Mar’20) – although I keep tweaking it.
What is your favorite channel in our group?
My favourite is the #news-and-articles channel. One of my main goals in joining the group had been to learn more about what is being discovered about Long COVID. The group has been amazing in providing a platform to discuss our hypotheses and navigate what has mostly been a bare-threads amount of information about our conditions.
What is your biggest hope for Long COVID advocacy?
My biggest hope for Long COVID advocacy is that all countries officially recognize this condition as a serious threat to both patients and their own health systems. This illness ravages lives and livelihoods and also has the potential to erode countries’ already fragile healthcare systems. Long COVID is the tsunami that is rising quickly from the COVID earthquake.
In case you missed it...
Body Politic is in the news!
“What If You Never Get Better From Covid-19?,” The New York Times Magazine
“If nothing else, the online organizing has been hugely important for some patients’ mental health. Lauren Nichols told me that, early on, she contemplated suicide because few — neither doctors nor friends — believed her when she detailed her symptoms…. ‘The Body Politic support group prevented me from killing myself. And I really mean that.’”
“Brain Fog: A COVID-19 Symptom That May Linger,” Everyday Health
One person who has experienced long-hauler brain fog is Fiona Lowenstein, a New York City–based TV producer and writer, who developed a case of COVID-19 last March that was severe enough to require hospitalization. The experience led Lowenstein to cofound the support group Body Politic, which now has more than 9,000 members who share over 60 channels on Slack.
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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
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