Can the vaccine really “cure” Long COVID?
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…
#vaccines: Most of us have seen the news headlines about Long COVID patients feeling “cured” by the vaccine. But these stories don’t convey the whole story. As this article in the Atlantic points out, Long COVID patients’ reactions to the vaccine have varied. In our #vaccines channel, patients share some of these reactions – which include the onset or worsening of tinnitus as well as GI symptoms in the days after vaccination. Some do report improved symptoms days after receiving the vaccine. Many patients in our community complain that stories of vaccines “curing” Long COVID patients give false hope and can lead to feelings of self-blame when symptoms don’t improve post-vaccine.
#expert-events: This week, Body Politic hosted a seminar with Dr. Nancy Klimas on Long COVID & post-viral ME/CFS: Modeling Complex Illnesses. Dr. Klimas is an expert on multi-symptom disorders, myalgic encephalomyelitis (ME), Gulf War Illness, fibromyalgia, and other neuro-immune disorders. In the seminar, Dr. Klimas touches on the medical sexism that exacerbates suffering for patients with “mysterious” or difficult to diagnose diseases, similarities between Long COVID and ME, and research findings related to these conditions. You can watch the recorded seminar on Body Politic’s YouTube channel here.
#victories: This week, members of the Body Politic COVID-19 Support Group are celebrating vaccinations, graduating from school, relocating to areas with more healthcare options, and finally being able to stomach a cup of coffee! We celebrate all victories, big and small – if you are looking for a boost of positivity in the support group, check out the #victories channel.
#medical-advocacy: In our medical advocacy channel, patients share experiences and advice on advocating for yourself within healthcare systems. Recent posts include questions on how to deal with providers who seem reluctant to acknowledge the usefulness of rest and pacing, and where to turn when you’ve been denied care at a Long COVID clinic because you only have a clinical diagnosis. Issues with test-based care come up again and again in our group, as do concerns that clinicians are asking patients to “push through” fatigue, without understanding the potential ramifications for people with post-exertional malaise.
This week in COVID patient news & events…
⭑ “Boston Celtics’ star forward Jayson Tatum said Tuesday he’s still struggling with the lingering effects of Covid-19 more than three months after first testing positive, joining a list of fellow elite athletes who have been hit hard by the virus.” Click here for the full article in Forbes.
⭑ In a bizarre turn of events, journalists who have written about Long COVID are now being accused of having invented the condition. Guardian columnist George Monbiot’s clapback to this absurd hypothesis is worth a read.
⭑ The Patient-Led Research Collaborative has released a new survey on Long COVID and vaccines! You are eligible to take the survey if it has been over a week since you last had a dose of any COVID vaccine (either 1st or 2nd dose). The survey is open to *everyone* – those who never had COVID, those who did, & those with Long COVID.
⭑ The CDC released new information on fully vaccinated people who have been infected with COVID. Their report shows that these cases, while rare, occurred most often in women and people under 60 years old. This piece in the Wall Street Journal details more.
⭑ The Patient-Led Research Collaborative has published an article on the origin of their group, the importance of patient-led research, and key findings on Long COVID. Read it here!
In case you missed it...
Body Politic is in the news!
"Black Women Are Fighting to Be Recognized as Long COVID Patients"
TIME
Featuring board member Chimére L. Smith
"Scientists haven’t figured out long Covid. Here are 5 of their best hypotheses."
Vox
Featuring Hannah Davis and Fiona Lowenstein
"These patients tested negative for coronavirus, but still have ‘long COVID’ symptoms"
PBS
Featuring patient-led research
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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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