The Antidote #11: pandemic trauma, brain studies, and disability art and activism
Plus, RIP Paul Alexander and Sir Anthony Epstein and bless you, Bernie Sanders
Welcome to The Antidote, the biweekly roundup post from The Tonic that is filled to the brim with goodies.
The Tonic is a lighthearted, heavily resourced newsletter for folks interested in learning about long COVID, ME/CFS, and other chronic illnesses. Come for the info; stay for the whimsy. Or vice versa.
I will generally post once a week on Saturdays or Sundays: a narrative post when my energy allows and resource roundups (The Antidote) at all other times. Occasionally I post more than once a week, usually to announce an event or to push brief, timely info out to you sooner.
Before we dive in…
I’d be remiss without taking a moment to acknowledge that the day I’m finalizing this post is Long COVID Awareness Day (March 15th) and for many (including me), this month marks four years of living with this illness and all that has come with it: the life-altering symptoms, the countless medical appointments and attendant indignities, the leaden weight of grief, the learning to live with it, the bearing witness to a society that has largely stopped caring. (Think I’m exaggerating about the not caring? How about the fact that Paul Alexander, the oldest person still living in an iron lung, died earlier this week of complications from a recent COVID infection? Did the caregivers entering his space not realize that they were providing care to quite literally one of the most infection-vulnerable people on the planet? Did they not understand the fucking assignment?! That’s a profoundly high level of not giving a shit).
The truth is, for those who are paying attention and who do give a shit, these four years have been HARD. I can’t really do this the justice that my fellow Substacker
has done, so I’m just going to drop this here and let you take it in. Such a great title (she is a sassy little one, after all).
Lest we leave you feeling bereft and hopeless, here is a beautiful song about where hope comes from (click on image to be taken to Instagram):
March fundraiser for Long COVID journalism
If you’ve been reading The Tonic for a bit, you know that we often link to articles from The Sick Times, a brand-new journalistic endeavor by expert health journalists Betsy Ladyzhets and Miles Griffis. They are building a Long COVID specific news outlet from the ground up and need our help. They received a generous matching grant of up to $15,000 for the month of March, which means that every dollar you donate is like donating $2. Be the change you wish to see in this Long COVID-silencing world and throw them a few clams if you’ve got ‘em!
Special offer
You may have seen my mention ofKeith C. Ellis, Ph.D. and the herbal triple anticoagulant therapy he developed after a research deep dive into Long COVID led him to the microclot issue as front and center. Keith is a medicinal chemist, and his supplement is called CircuGuard. Here is a bit more from a recent post of his. You can read his posts for a deep dive on each ingredient in CircuGuard and why they are effective replacements for the pharmaceutical versions.
Here is a video of a woman who is having great results so far. I have been using it for about three weeks and I’m tolerating four pills a day with no sensitivities. Within the first week, my brain felt clearer than it has in a long time. This clarity has remained over these weeks. I’m monitoring the clotting in my fingernails over time to see if that resolves too. I plan to try CircuGuard for at least three months.
If you also want to try CircuGuard, Keith is offering a special one-time code to readers of The Tonic. Get 10% off when you use the code TONIC10 at checkout.
Wish list!
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The Tonic is free to read - Amy is so happy you’re here! There is no paid subscription option here like with other Substack newsletters. However, if you are valuing the experience and are able, please consider a show of support by sending a gift of health, wellness, or joy from this Amazon wish list. Anyone who does gets a 📢 in an upcoming post. Thank you!
Now onto the miles and miles of links.
COVID and Long COVID
🗞️ Another headline saying that scientists might have found the cause for Long COVID. Maybe for some, but probably not for all: Scientists May Have Found The Underlying Cause Of Long Covid.
🧪 Here’s a great resource: the Home Test to Treat program provides free at-home telehealth services for anyone infected by COVID-19 or the flu. It’s designed to address the socioeconomic barriers to accessing testing, provider care, and treatment, and is currently available to anyone in the U.S. 18 and up. Click on the link above for more information.
😶🌫️ A new study measures the impact of Long COVID brain fog.
🗣️ Read #MEAction’s response to the long-awaited, $8 million NIH study on ME/CFS. The cohort of 17 test subjects was considered very small and not representative of people with more severe forms of ME/CFS, though #MEAction did acknowledge that the study was very thorough.
💰 And speaking of the NIH, here’s a link to the RECOVER page that spells out what the recent infusion of $515m will be spent on.
👩🏽⚕️ A critical care physician battles long COVID with hope and grit.
🧠 A new study shows that compared with individuals who never tested positive for SARS-CoV-2, hospitalized patients with COVID-19 had twice the risk for psychiatric or neurologic diagnoses during the 12 months after acute infection. Less severe COVID-19 was not linked to a higher incidence of psychiatric diagnoses and was associated with only a slightly higher risk for neurologic disorders. Hopefully this means that brain fog is not indicative of lasting neurologic disease.
🤎 A journey of inequity in POTS treatment (long haulers and folks with ME/CFS are prone to also have POTS, or postural orthostatic tachycardia syndrome, where one’s heartrate jumps very high upon standing and they may experience dizziness and fainting as a result).
Webinars and podcasts
🖥️ RECOVER is holding a seminar on Patterns and Prevention of Long COVID: Findings from RECOVER EHR Cohort Studies. Register here.
⚡If you’ve ever been curious about Miguel Bautista’s CFS Recovery Program, he’s hosting a 90-minute training on recovering from ME/CFS, Long COVID, fibromyalgia. I personally have found his YouTube videos to be helpful, particularly the ones where he talks about flares and crashes as “adjustment periods” that are actually necessary for recovery.
Here’s an info video and you can register here.
🦠 Sir Anthony Epstein - otherwise known as half of the research duo who discovered and named the Epstein-Barr Virus (EBV) died in February at the age of 102. I found this program with clips of him talking about his discovery pretty fascinating. Ninety-five percent (95%) of us have EBV, and millions with Long COVID and ME/CFS have had their dormant EBV reactivated by whatever virus or trauma served as the insult to their systems.
🥰 Disability Intimacy: Essays on Love, Care, and Desire is a new book by Alice Wong. Come to a special reading from the book taking place online on March 26th at 7pm ET. Hear from panelists featured in the anthology as they explore disability & intimacy themes tied to romance, community, caregiving and friendships. Moderated by Alice Wong. Register here.
🧘🏻♂️ Do you have ME/CFS, Long COVID, fibromyalgia, chronic Lyme, POTS, etc., and have been wondering if/when it’s safe to engage in a movement practice? Join the Women’s Wellness Circle gals for their 90-minute workshop Safe to Move on March 26th. All genders welcome. Find out more here.
Health miscellany
🎓 Disabled scientists are often left out of academia. The NIH can help change that.
✊🏽 “To say my body is diseased is an imposition.” Read about a disabled artist’s journey from ‘Oh, sorry’ to social justice activism.
😵💫 A beautiful post by
:
😌 And for those with chronic complex illnesses, here is a great post by
on polyvagal therapies to help regulate the nervous system. Give the neurographic drawing/painting a try!
🎨
on staying creative during chronic illness:
🫀 I really had no idea about this: too many donor organs go to waste. Here’s how to get them into the patients who need them.
🍲 Trader Joe’s recalls chicken soup dumplings because it looks like someone dropped a permanent marker in them?
🐶 Should you care about what the cat (or dog) dragged in? A doctor’s advice on what diseases you can pick up from your pets and what to do about that.
🥗 I had never heard of this, but it feels important: Orthorexia: An eating disorder that few people understand and many accidentally applaud. Orthorexia is explained in the article as a fixation on eating “clean,” as defined by a set of rules dependent on certain individuals and the context they live in.
Now stick around for…
🥳 The After-party 🥳
Added resources, joy, tomfoolery, and buffoonery
🎬 The 37 Best Feel-Good Movies to Boost Your Mood
🗽 NYC architecture is getting boxier and uglier by the day. The skyline is nothing special anymore. Here’s an article about New Yorkers railing against the same thing.
🔞 Leave Jennifer Aniston and her face ALONE.
👷🏽♀️ A change every company should make: These companies tried a 4-day workweek. More than a year in, they still love it.
🌊 This chart of ocean temperatures should really scare you. Hurricane season will just get hairier and hairier.
🏆 Winner of the week: U.S. Senator Bernie Sanders, who not only proposed to codify March 15th as Long COVID Awareness Day moving forward, but who also proposed a 32-hour workweek for U.S. workers. "One of the issues that we have got to talk about is stress in this country." HEAR, HEAR!
🤦🏼♀️ Buffoon of the week: The Home Depot co-founder Ken Langone, who cried victimhood after hearing Bernie Sanders’ 32-hour workweek plan. "We're always a target," Langone said. Here’s how we feel at The Tonic when the ultra-rich cry foul while raking in obscene profits on the backs of the everyday worker:
Everyone: do your home repair shopping at a local small hardware store or at Lowe’s, which is a Black-run business.
🐈⬛ 💩 And finally, it’s this week’s Cat Dump. Zira-the-elder-stateswoman edition. She made it through her partial mastectomy today like a champ and she comes home today 🥹
“flares and crashes as “adjustment periods” that are actually necessary for recovery. “ it took me 2 relapses to realise that “relapse is all part of the journey” and then the 3rd to realise that it’s part of our healing on a deeper level. When I went into it this time last year, I intuitively knew that a big level up was coming. It was shit to experience a relapse as part of it but helpful to have such heightened level of awareness. It def makes it easier to navigate and not as brutal an experience.
Great to hear of the discovery of EBV, as it's possibly at play in my ME/CFS (this and HSV)! Nice one on unearthing this gem and sharing.