The Antidote #13: our hero Bernie, athletes with POTS, and the latest LC stats
Plus, some new and notable podcasts, and dying on your birthday? (gasp!)
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.
Wish list shout outs!
Gifts? Yes please! Many of my readers have chosen to support my efforts here via the Amazon wish list in lieu of paid subscriptions (which could jeopardize my disability benefits). A big Tonic THANK YOU this week goes to a wonderful anonymous donor (a wish list two-timer!).
If anyone is interested in showing support for The Tonic, see below for the info. There’s something for every budget and any help is appreciated. (Note: please be sure to include a note with your gift(s) so I can include you in the shout out!)
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!
Keith C. Ellis, Ph.D., a medicinal chemist, developed CircuGuard, an herbal triple anticoagulant therapy, after a research deep dive into Long COVID led him to the microclot issue as front and center. Here is a bit more from a recent post of his. You can read his posts for more information 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 over a month and I’m tolerating six pills a day with no sensitivities. Within the first week, my brain felt clearer than it has in a long time. As I’ve mentioned in my last few posts, I’m coming out of an adjustment period, so time will tell if CircuGuard is helpful in the long run for me. I’m monitoring the clotting in my fingernails over time to see if that resolves too; I plan to try CircuGuard for at least a few more 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.
Now, let’s hit the links ⛳
COVID, Long COVID, and ME/CFS
❤️🔥 FIRST UP: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal. That’s right, America’s loveable crank socialist senator walking the walk yet again by proposing a whopping $10 billion over 10 years for Long COVID research.
You can read the specifics of the proposal here. There is a call to action out there to let the Senate know that we want ME/CFS research to be included in this funding. If you’re interested in supporting that, email your comments to: LongCOVIDcomments@help.senate.gov
💀 An absolute MUST-READ for those who don’t already know the havoc C-19 wreaks on the body. Do not bury your heads in the sand on this. LINKS LINKS LINKS…even if all you do is browse the link titles in this post, you’ll get the idea.
🤢 Here’s a new study out on Long COVID subtypes, for any of you looking for a bit of science reading: Large-scale phenotyping of patients with long COVID post-hospitalization reveals mechanistic subtypes of disease.
🏅 Anyone remember 1,374 days: My Life with Long COVID, that epic graphic depiction by Giorgia Lupi in the New York Times a few months back? It was a work of art. Well, girlfriend is up for a Webby award. Vote for her here!
💊 Paxlovid Fails to Shorten COVID in Standard-Risk and Vaccinated At-Risk Patients. But another study said it prevents Long COVID by 26%, so I dunno. If you’re a viral long hauler, a vax-injured long hauler, or a pwME/CFS, consider yourself high-risk and ask your doc for it anyway.
🎽 So many long haulers, including me, were fit/athletic/sporty types before contracting COVID-19 and then developing long COVID. Many of us have discussed this anecdotally between ourselves. Well, here’s something: They’re young and athletic. They’re also ill with a condition called POTS. Diagnoses of POTS have increased a ton since the advent of Long COVID. It is a living heck and especially cruel/puzzling for those of us who used to work out a lot. (Many thanks to my glorious friend Steph for passing this one along).
🎉 Solve M.E. recently named Emily Taylor as its new President and CEO. Emily has worked for years as the VP of Advocacy and Engagement, and played a critical role in securing the $1+ billion grant for the RECOVER initiative from the NIH. Congrats, Emily!
🩺 So many great patient-led initiatives: Long COVID still has no cure — so these patients are turning to research.
🏫 That NYT article about the proliferation of school absences that made no mention of long COVID was just a head scratcher.
goes there.
🦠 As Recommendations for Isolation End, How Common is Long COVID? Lots of good data in this piece, but here’s some worth pointing out:
There are two groups with notably higher rates of long COVID than others, which include:
-People who are transgender (11% of whom have long COVID), and
-Adults with disabilities (12% of whom have long COVID).
People who are transgender and those with disabilities already face barriers accessing health care—which may contribute to their higher rates of long COVID—but higher rates of long COVID among such groups may also exacerbate such barriers.
🏳️🌈 (oh and not Long COVID-specific, but while we’re at it: LGBT Adults’ Experiences with Discrimination and Health Care Disparities).
➡️ New ME/CFS-related Substack newsletter alert: check out
by . Described as “tragicomic personal tales, and what the experts say, about life with ME/CFS.” Tara’s got the poignant-yet-funny thing going on too, y’all. Plus: CATS! 🐈🐈⬛. Give her a new subscriber today.📖 Ann E. Wallace, PhD, fellow long hauler who took the stage with me at a recent reading from The Long COVID Reader, has a new book of poetry coming out: Days of Grace and Silence: A Chronicle of COVID’s Long Haul. Order your copy directly from Ann here (same price as Amazon, except signed!).
Webinars/conferences/podcasts/videos
🎧 I just found this great podcast, put out by the Institute for Neuro-Immune Medicine in Miami (Dr. Nancy Klimas’ shop). It’s called Hope and Help for Fatigue & Chronic Illness. Get it on Spotify, Apple, or wherever you get your podcasts.
🔊 Speaking of INIM, they’re putting on a conference you can attend virtually on Friday, May 10th, called Talks That Move The Needle. Some heavy hitters are in the line-up, including The Tonic’s fave yoga instructor, Shannon Williams of Nourish Therapeutic Yoga. Here’s the full schedule:
👂🏻 Here’s another podcast, brand new by fellow Substacker Beth of the
newsletter, called A Friend for the Long Haul. Give it a listen and a follow on your favorite podcast platform (and subscribe to her newsletter while you’re at it).🖥️ Solve M.E. is hosting this upcoming workshop with more big names in the LC/ME research world. Register here.
🚸 The next RECOVER webinar is being held on April 23rd from 12-1:30pm ET: PASC in Children: State of the Science and Future Directions. Register here.
Health miscellany
❤️🔥 The Case for 'Pleasure Hygiene': Sexual Health in Patients With Chronic Illness.
🍳 Is It Safe to Eat Eggs and Chicken During the Bird Flu Outbreak?
🦀 Cancer cases among young people (considered to be under 55 when it comes to cancer) are on the rise. Scientists are now saying that accelerated aging is linked to this increased cancer risk in younger adults.
🍽️ Did you see the recent headlines suggesting that intermittent fasting is associated with higher cardiac deaths? Well, it’s a bunch of malarkey, according to the
.🚫 Give this doc a pat on the back because he’s absolutely right: As a rule, rape exceptions for abortion don’t work.
🍇 Sell by and best by dates on food are meaningless. Visually observe and sniff your food instead to avoid wasting more food (and money).
🤦🏻 I have made so many of these gaffes: 6 Things You Should Never Say To Someone You’re Dining With — And Why.
👣 I found this extremely fascinating and now I’m thinking of getting a pair of these:
😮 WHAT IN THE HOLY HELL? Halle Berry’s perimenopause was misdiagnosed as ‘worst case of herpes’ her doc ever saw. Her doctor should be investigated by the medical board.
😷 Why Jae Walker is Still Wearing a Mask.
💀 This was kinda funny (and also not something I knew): The birthday effect: why your big day might be your last.
🤓 Glasses aren't just good for your eyes. They can be a boon to income, too.
Now stick around for…
🥳 The After-party 🥳
Added resources, joy, tomfoolery, and buffoonery
🕺🏾Sound up for this gem (thanks, Nancy!):
☎️ This is why I never pick up unknown calls…but some of you have to for work, so be careful: Don't say yes when caller asks 'Can you hear me now?'
🏳️🌈 My Substack buddy
wrote a brave, honest, and beautiful piece for HuffPost Personal: I Came Out As Gay After Being Married For 25 Years.🧌 Here’s a good follow up to Katrina’s piece, since the trolls were out trolling in full force. A must-read, IMO.
🚘 What's the Story With Headlight Glare? (please read this and then please, for the love of chocolate, STOP FLASHING YOUR HIGH BEAMS AT ME).
🎤 Three artists I have given honest listens to but just do not enjoy: Adele, T. Swift, and Beyoncé. This past week, I gave Cowboy Carter a real try, and I just couldn’t. But I love that Dolly Parton gets behind fellow women singers of all genres.
🏆 Winners of the week: We have three. No buffoons this week, because there are too many winners to talk about.
RIP, Peter Higgs: science mourns giant of particle physics.
Dr. Thaer Ahmad, I salute you: Palestinian American doctor walks out of Biden meeting in protest. This administration mourns the starving and the dead as it funds their hunger and their killing. For shame.
Let’s GO, Kristin Lyerly: Wisconsin doctor who sued to protect abortion access joins congressional race.
🐈⬛ 💩 And finally, it’s this week’s Cat Dump. Kitty hodge podge edition.
I absolutely agree with you on all those points. We don’t know what lasting health effects the pandemic will have on young people, and the lack of attention to fixing structural problems that would prevent things from getting worse is appalling. And any article that uses the American Enterprise Institute as its main source of info is suspect in my book. The NYT article disappointed on many fronts. (And I agree that they are taking a right-ward turn recently.)
They referenced some of the data we actually DO have from the CDC, but neglected to even discuss it. According to that data, school absenteeism (>15 days) increased from 3.3 to 5.8% from 2019-2022 due to illness. A difference of 2.5%. So clearly, illness is a big part of the equation.
But I disagree with the Substack author claiming that they are “inventing increasingly bizarre explanations” and that:
“It is truly astonishing and staggering that major news outlets are getting away with inventing ideological explanations for what is a clear, national and international expression of increased rates of illness. It’s particularly bizarre because this ideological explanation- that parents must for some reason value school less now- is attended by neither data nor even anecdotal evidence.”
Maybe there is more evidence out there about the other reasons for absenteeism. But the school officials, etc that they spoke with were not making stuff up. The other 8.5% rise in absenteeism are due to things that are likely not illness-related. And the general gestalt at school now is so much different than it was in 2019–the jig is up and parents are just not doing the normal “get up and send your kids to school every day unless they’re sick” like they used to. For many different reasons. The Substack author had some great, valuable things to say that were spot on. I guess I just wish people could express their views while being a little less strident and narrow. That’s all I’m saying. Ack, I’ve spent far more energy on this than I meant to! —sincerely, your fellow March (28), 2020 alum. ;). If you got this far…thank you!
Thanks so much for the shout-out! 🙏 Great round up, useful and amusing, keep up the good work.