The Antidote #21: athletes and COVID, neuroinflammation, and ALL the winning
Plus, more mask nonsense, chronically ill artists, and...sportswomanship!
Welcome to The Antidote, a link 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.
Wish list shout outs!
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So much winning
Welcome back to The Tonic, my friends. Summer break #1 was excellent. To quote our hopefully permanent ex-president (but have it actually be true), there’s just been SO MUCH WINNING.
First up, I had a thoroughly enjoyable time visiting my family on Long Island to kick off my break a few weeks back. I got to laugh at the adorable one-year-olds in our family and get my fill of hugs and kisses. I got to watch my big sister grandmothering, which filled my heart with so much joy (she’s a natural and that baby girl is so attached). I got to visit my sibkid (gender neutral word for my sibling’s kid) doing their thang at work as a behavioral specialist at the local Bideawee animal shelter (#soproud). I finally got to see my youngest badass niece slay all day at one of her softball games. In fact, I miraculously got to spend time with all six of my sibkids. That never happens! It filled Aunty Claus’s love bucket. I also got to see my dear friend Anna and her daughter Tianna (my gorgeous and brilliant goddaughter) on my way home.
You see? So much winning! And it didn’t end there. I’ve been voraciously consuming as much of the Olympics as I can (like many of you have, except in a disability-frees-up-more-hours-in-your-day type way).
How about women’s gymnastics? (our Winners of the week below). The swimming! Track and field! Diving! Volleyball! Basketball! Did you catch the American-Swede who broke the world pole vaulting record? Mind-blowing! The track phenom from Saint Lucia who earned her country’s first ever Olympic medal? WOW.
Did you know that there is a HUMAN steeplechase event? And that it involves jumping over water? Neither did I, but it sure was thrilling to watch (until that poor Ethiopian man fell during the final and got seriously injured - heartbreaking!).
I feel like I’m going to have Olympics seasonal affective disorder once the games end. Oh well. What makes Christmas so exciting is that it only happens when it happens, and so it goes with the games.
Crikey, I almost forgot: The Paralympic Games are still to come! August 28th-September 8th. Bring on more athleticism and inspo!
To round out all the winning that’s been happening, I got a thick packet in the mail this week from the Social Security Administration. After peeling off the mostly blank cover sheet with a sense of dread (because every time I have done this, it’s been bad news), I see emblazoned on the top of the second page:
Notice of Decision - Fully Favorable
My disbelief was so palpable, I stood there and read the entire seven-page decision word for word. The torturous saga of trying to obtain disability - whether private or government (and I’ve now been through both) - conditions you mentally in ways that are not at all healthy. There are so many excruciating steps to the process of application, evidence gathering, badgering your doctors, denials, appeals, and then if you are “lucky,” compliance, that you go through the full range of human emotion. Disappointment, sadness, rage, demoralization, imposter syndrome (“maybe they’re right; maybe I’m not really this sick”), back to the kind rage that keeps the fire under your ass fully lit (“fuck that - I’ve paid into these benefits so that they are here when I need them”), and then (again, if you’re one of the “chosen ones”) something akin to relief that might have bordered on happiness if these entities didn’t already suck that possibility out of you over YEARS (not exaggerating - both private and government took me over two years each to obtain; for some, it takes even longer).
I’ll tell you what was satisfying in the administrative hearing phase of the government case: the judge I got was a real listener. He was kind and patient, and asked thoughtful, relevant questions. His seven-page decision reads like a carefully considered essay, where he took into account the very specific details of all my doctors’ notes (which were consistent across doctors and disciplines) and the pertinent scientific measurements and facts involved in the 12-page, two-day cardiopulmonary exercise test (CPET) results to build the case for full disability (including quoting the most devastating line in the report: that I have the VO2 peak of “an inactive 76-year-old woman”. Ouch.)
A particularly satisfying part of the ruling pertained to the terrible and dismissive “doctor” contracted by the SSA to conduct a physical exam after my first appeal - the asshole who took one look at me in my mobility chair and said, “aren’t you a little young to be in that thing?” The judge wrote that this jerkoff’s (my word) opinion was “not consistent with the multitude of treating and examining opinions finding that the claimant cannot sustain standing and walking for even 2 hours in an 8-hour workday due to fatigue, shortness of breath, pain, and dizziness.”
It was nice to see my sense of that wanker’s incompetence validated. I was glad that I didn’t internalize his three-minute physical exam and the subsequent second denial as any kind of proof that I wasn’t really disabled. That’s not easy to do - they knock you down so many times, you may start to believe their bullshit. But it is essential to maintain your sanity and stick-to-it-iveness throughout the process.
Bringing this in for a landing
I am fortunate compared to so many who are truly disabled by LC and other conditions who maybe couldn’t afford the very expensive testing I got and who ultimately get denied (though click here for a letter a bunch of Senators recently sent to the Social Security Administration about helping those with Long COVID overcome barriers to applying for and receiving disability). While I feel vindicated by my own outcome, and again while I know how lucky I am, in truth this decision doesn’t change that much for me. The amount of money that the SSA will pay me each month will get deducted from what my private insurer pays me, so I will wind up with the same amount of money, but with two entities to comply with now instead of just one.
And compliance is exhausting, y’all. You have to periodically prove to them that you are still disabled and need their benefit. I have learned the hard way to collect all doctors’ notes and lab results myself, in real time whenever possible, and save them to my computer. You cannot rely on your overworked, and let’s face it, sometimes unwilling doctors to submit the back-up needed to keep your benefits going. This alone has made the biggest difference in my ability to stay in compliance. Take matters into your own hands, or they’ll use their hands to snatch that money away.
One last thing for the non-disabled out there: bear in mind that these benefits pay out a fraction of what you were earning as a working person. I was fortunate to be a decent earner during my working days, which means my math comes out higher than many others’ out there, and I am aware of how privileged I am in that sense. However - and this cannot be stressed enough - there is no one out there who is able to live on these benefits. No one. We are scraping by here and going further and further into debt with each passing month. If not for having a partner who can work, I don’t know where I’d be. If I were a single person, I could not afford rent, food, transportation, medical costs, communication costs, and more on what my monthly payout is. To say nothing of cat food!
Better get to the links! Buckle up - you’re in for a long ride this week.
COVID, Long COVID, and ME/CFS
🏅 Sticking with the Olympics: Tokyo was meant to be the COVID Games. It’s far, far worse in Paris. Athletes who tested positive were switched to single dorm rooms and yet were still allowed to compete if they chose to.
published a banger of a post this morning about the extent of dangerous disillusionment during these games.
Nate summarizes what is wrong with this picture with this line:
One of the stars of the Olympics collapsing with covid on live TV in front of a global audience and being forced to withdraw from the games after we’ve been repeatedly told covid is over (and if it isn't over it is definitely now mild) really does put a ribbon on the last few years.
Check out Nate’s full post, which goes into details about all of the athletes who had or got COVID during these games, and boy, it was even more widespread than I realized.
Long haulers can tell you what doing intense physical activity, combined with the adrenaline rush of competition on the ultimate world stage, could do to these athletes. But as the kids say, FAFO (fuck around and find out). Keep treating this like any other virus and a good number will certainly FO.
🎽 Oh, and then there’s this below. It seems that, in addition to being elite in their sports, these athletes could also be playing an elite level of FAFO with the virus itself.
I have often wondered how long COVID could have befallen me when I was in arguably the best physical shape of my life when it did. Throughout recovery stories, you hear all about former marathoners, triathletes, and other exercise enthusiasts who were stricken with either LC or ME/CFS. It can’t be a coincidence.
🩺 Healthcare in the U.S. is a joke. Want proof, Olympic-style? U.S. Athletes Are Taking Full Advantage of Free Healthcare in Olympic Village. Truly pathetic that athletes have to cram in their non-sports-related healthcare before heading home.
🏊🏻♀️ One last sports-related connection: Katie Ledecky Has POTS. Swimming May Help Her Manage It.
🧪 A video accompanies this article: Long COVID has affected millions. Here's what scientists now know.
😣 Three Years After COVID Hospitalization, Cognitive Problems Persist and Worsen. Although this is ostensibly about those who were hospitalized, one key takeaway from the article is that symptoms at the 2-3 year point were not predicted by the severity of the acute COVID illness, which is why those with “mild” or even asymptomatic C-19 infections often fare miserably with LC. (If you want to read about a gentleman who was so sick from acute COVID that he was placed in a coma in the ICU, and how he miraculously does not now have Long COVID, check out
’s newsletter ).🦠 The
is an excellent source of all things COVID and LC on Substack:
🔬 The Push to Get More People Into Long COVID Studies.
👨🏼⚕️Dr.
with an eye-opening look on the summer wave, complete with graphics that help lay folks make sense of the variants:
👺 And, as this summer wave comes to a town near you, two counties away from me, they are infringing on our civil rights: Nassau Mask Ban: County lawmakers approve bill to make wearing facial covering in public a crime.
😷 All these bans, despite studies like this one published in late May that show that wearing a surgical face mask in public spaces over 14 days reduces the risk of self-reported symptoms consistent with a respiratory infection, compared with not wearing a surgical face mask. We are a doomed species.
➡️ To round out mask-mania, here’s a link to KN95 masks that the Wirecutter recommended a few years ago and that I’ve been wearing ever since. I have emailed with the man who owns the company that distributes these masks, as they are located in my county. Very nice guy. They donated a million masks to various non-profits during the height of the pandemic.
✈️ Okay, I lied: one more. If you are flying unmasked these days because you’re listening to what “officials” (ha!) have told us regarding the high quality of air circulation during flights, you will not want to miss
’s post where he measures the air quality at various points during a recent trip. You will likely never see my pearly whites on an airplane ever again.
💰 By now you may have heard that Senator Bernie Sanders introduced his expansive Long COVID Research Moonshot legislation. Stay tuned on this one, as it’s going to take a lot of our phone calls and emails to get this done.
🧑🏽🤝🧑🏾 We tend to focus a lot on the science and research in the Long COVID-sphere, but here’s a great look at what’s going on personally and sociologically: Long COVID and social struggle.
🧠 Here’s
with a fantastic post on neuroinflammation and ME/CFS:
🎨 Artists don’t stop having creative impulses when they develop these shitty illnesses. Here’s the annual severe ME artists project and a fascinating piece by The Sick Times on an artist who visually depicts what each symptom of LC feels like. I’m including their depiction of fatigue here (my most disabling symptom), but do click through and check out the other symptoms, especially if you don’t have LC and want a better understanding of what it feels like.
🤳🏼 Finally, I came across this 24/7 resource for long haulers, offered by other long haulers. It’s a call/text line called the Brooke Line, named for Brooke Hurley who died in 2022 by suicide as a result of LC suffering. Share it with anyone who needs a lifeline.
Webinars/conferences/podcasts/videos
🤧 Here is a phenomenal video (a bit on the long side) by Lola Germs on YouTube explaining the uptick in LC and ME/CFS and why yes, it does seem a lot more people are sick now. I wasn’t able to embed this one, so here is the link.
❤️🩹 Have you been making recovery progress, only to have frustrating flares along the way? This video is for you:
📚 Sticking with recovery, here’s a great primer on the concept of “bookending” your activity in ME/CFS and LC:
🧫 Lymphocytes are immune cells that play vital roles in fighting infections. Here’s a short and simple explanation of lymphocytes (T cells and B cells), for anyone who has ever wondered:
Health miscellany
🩸 Red Cross national blood inventory plummets 25% in July - declares emergency blood shortage. If you are healthy and able, please donate. Long haulers - you probably shouldn’t, according to this piece.
👨🏾🦲 Scientists may have finally found a cheap, natural cure for baldness. (Before you ask: yes, of course I shared this article with Baldy, though truth be told, I have only known him bald, and I think a head of hair on his perfectly shaped egg would freak me TF out 😲).
😬 Teeth in the US For Those Who Can Afford Them—No Matter Your Politics.
👄 Staying on the mouth: Could Using Listerine Every Day Be Bad for Your Health?
👼🏽 Health halo alert: Let’s Not Fool Ourselves About Yogurt. (Plain Greek or non/lowfat yogurt are still fine).
😔 Suicide in preteens is up significantly, according to this study. Notably, Black preteens had the highest rates of suicide, whereas Hispanic preteens had the highest percentage increase. Another study noted that, while age-adjusted suicide rates decreased for White individuals, they increased for Asian American or Pacific Islander youths.
♋ Gen Xers are experiencing higher rates of many types of cancer than generations prior, believed to be due to what we were exposed to in early life. Yikes. I just had a flashback to my mom smoking in the car with us with all the windows rolled up. Thanks for the smokes, ma!
🦟 Along with having their environment destroyed and whole families wiped out, Gazans have been struggling with famine and the spread of diseases previously eradicated: Polio cases 'very likely' in Gaza population, WHO says. I am disgusted by my country for using my tax dollars to contribute to this ongoing devastation.
🪳 Here’s a helpful primer on Lyme (and why is there no tick emoji?):
🏥 Please take a few minutes to read this harrowing story by
:
Now stick around for…
🥳 The After-party 🥳
Added resources, joy, tomfoolery, and buffoonery
🎶 Celine on the Eiffel Tower in the rain! In case you missed the opening ceremonies and her beautiful, triumphant performance, here’s a link. She’s been living with Stiff Person Syndrome for the last few years and we just never knew if we’d hear that voice again. Read the comments under the YouTube video too - lots of people calling it the live performance of our lifetime!
🙄 File this under, “oh, brother: Olympics edition”:
🤣 But here’s a hilarious version (thanks to my big sis for sharing this one with me):
😒 Of course, the Olympics hasn’t been all COVID-and-joy: Gender “Controversy” Around The 2024 Olympics Make It Clear How Much People Still Fear Powerful Women. And check out this post by
:
🏳️⚧️ Let’s shake off more of the ugly with some trans beauty from
:
☠️ For the hilariously macabre, don’t miss: 7-Year-Old Student’s Sympathy Card for Teacher Goes Viral.
🤦🏻 Buffoons of the week: El Paso School Bans All Black Clothing 'Associated with Depression'. Poor goths! First of all, this is baseless horseshit and probably fascist. Second of all, let’s say there is a grain of truth to the idea that youth who wear all black are suffering with depression. You’re going to take away one of the few external signs that might prompt school personnel to check in with these kids?
🏆 Winners of the week: The camaraderie during the women’s gymnastics was inspiring and heartwarming. This week’s winners are gymnastics first ever all-Black podium: Brazil’s Rebeca Andrade for earning the gold medal in a nearly flawless floor routine, and Simone Biles (silver) and Jordan Chiles (bronze), not just for their sizzling hot medal-earning skills, but for their humility and sportswomanship (red, squiggly auto-correct line, you can go f-off). Andrade grabbed their hands right after, too. I mean 🥹.
🐈⬛ 💩 And finally, it’s this week’s Cat Dump. Feline Olympics edition.
Thanks for the shout, Amy. It's been a tough week! But also, congratulations on getting your disability case resolved! High five! That entire process is so exhausting and emotionally draining. I hope you've taken a bit of time for yourself to just sit with that joy.
I was listening to the Tim Walz interview on the Ezra Klein show and his logic for free school lunch for all rather than only those at certain income levels because of simplicity, efficiency, and social status ramifications was so inspiring because bureaucracy is, while sometimes well meaning, also horrifying to navigate - I bet we spend more money determining if someone is eligible for benefits than just giving those benefits to anyone who can moderately show they have a disability. Glad you were triumphant if mostly morally not monetarily.
And gosh I’ve already got an Olympics hangover bad 😫love those kitties staring intently at the tv Rizzie did the same thing 🖤