Keeping steady and ready
Plus, The Antidote #28: tons of research, the future of public health in the U.S., and racial disparities galore (<sigh>)
The Tonic is a lighthearted, heavily resourced newsletter for folks interested in learning about long COVID, ME/CFS, and other health conditions. Come for the info; stay for the whimsy. Or vice versa.
Wish list shout outs!
Many of you beauties 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 Danya C., Diane, and wish-list four-timer Teri A.!
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. There’s something for every budget and any help is appreciated. Anyone who does gets a 📢 in an upcoming post (be sure to include a note with your gift). Thank you!
Quick-me-up(dates)
Well friends, autumn has fully descended here in the northeastern U.S. and I’ve been soaking in my favorite season. I’ve had three fabulous mini trips that filled my social and emotional bucket. I’ve gotten to see an array of friends. I’ve leaf-peeped up the wazoo. I’m walking more (I’m up to about 35 minutes at a decent clip) and continuing to work on a few life goals.
As October turned into November and I grabbed a new blank calendar page that I use to track the severity of my symptoms (something I was advised to do for disability benefits purposes, but that I now just do for my own edification), I decided to flip back through them and compare a few years of Octobers.
Since my worst symptom by far is fatigue, that is the one I use to measure my overall progress. In October 2022 (the year I had to give up working), my fatigue was averaging 8-9 out of 10 most days (10 being the worst). In October 2023, I averaged 7-8 out of 10. And this October? I averaged mostly 6’s, with even a few 5’s sprinkled in.
Sometimes I can’t tell if I’m making progress, because as you can see, it’s incredibly slow. Friends and family who don’t see me all the time often remark that I seem so much better than I was. It’s a bit like when someone loses weight, and the people who live with them every day don’t really notice the change, but the people who don’t see them too often experience it as a dramatic difference. These folks, and my calendar comparison, are a great gauge for me, especially when I get used to a present-day level of fatigue and fall into the trap of thinking it has always felt like this.
It also reminded me of what I read in 2020 on Bruce Campbell’s website about his own recovery from ME/CFS; he tracked his symptoms much like I do and noticed that he averaged about a 1% improvement each month. It took him years and years to fully recover, but he eventually did. I remember feeling super discouraged at the time: “One percent each month?? That’s SOOO SLOOOW!!”
That was all before I really understood how damaging these illnesses are to cells, to processes, to the brain and the autonomic nervous system. Before I understood what true pacing and nervous system reset work was like. Before I learned that there is no way out but through.
Looking at my October comparisons from the vantage point of 2024 Amy, I felt nothing but pride and gratitude. I have learned how to slowly and lovingly care for this body of mine. That’s the pride part. The gratitude part is that I am fortunate to have received the necessary financial benefits to live a slower life for a few years. I’ve also been lucky to have had my body and mind respond to this gentle care. I don’t want to take any of that for granted. There are folks recovering more slowly than I am and there are folks not recovering at all, or in some cases getting worse. This poignant piece by Naomi Whittingham in The Sick Times, The trouble with recovery stories, keeps me plenty humble. It also keeps me aware of being too “rah-rah” (think: obnoxious cheerleader) about my own gains.
What goes hand in hand with learning all that I have about giving my body the space to heal is that I have fortunately managed to dodge any new infections. I don’t have children, so no one is really bringing home unavoidable germs. I keep a close eye on the COVID-19 wastewater reports (the virus tends to show up in municipalities’ wastewater ahead of infectious waves at the population level; for up-to-date info on this, check out - and support! - The Sick Times). I mask virtually everywhere I go in public; the exception is most outdoor spaces or any large, uncrowded indoor venues (including restaurants), especially when cases are low and I go at off-peak times. If I am sharing overnight living space with anyone who isn’t Baldy, I have asked those folks to take at-home tests. All in all, this day-to-day and sometimes minute-to-minute risk analysis has been working well for me.
Now for a few health updates:
some readers may recall that I started seeing a new immunologist about my mast cell activation syndrome and specifically my perpetually high serum tryptase levels. She tested me for hereditary alpha tryptasemia (HaT) and lo and behold, the result came back positive. So, I have a genetic disposition to high tryptase levels, and she opined that this could possibly be what made my otherwise fit and healthy ass a long hauler. I’m thinking it’s also potentially causing my intractable GI issues, since it may mean I have more mast cells in my bone marrow and GI tract, but that update…
is this: my GI doctor believes, based on everything I told him about my last 4.5 years of errr…changes to my bathroom output, that I may have a cousin of SIBO (small intestinal bacterial overgrowth) called IMO (intestinal methanogen overgrowth), which involves an excess of certain flora in the intestines that cause my, uh, traffic jams and slowdowns. Testing for this would have involved me going into NYC to do a special breath test, but he said it’s only 75% reliable and often results in false negatives, so we decided just to treat the IMO. I am currently on a two-week course of the antibiotic xifaxin, which I was on a few years ago at the behest of my then-functional medicine doctor and which brought me pretty immediate relief (until the traffic jams came back soon after stopping the meds). This time around? No such luck. No change to my problem. I’ll finish out the course of antibiotics this weekend and then write to him about next steps. (BTW, if you also suffer from such slow/jams - ha! - check out
’s excellent post on the subject).and lastly for now, I recently saw a hematologist who reviewed my latest ferritin/iron panel and after running his own tests just to confirm, agreed that I have an iron deficiency. Since I can’t tolerate any additional slowdowns that come with taking oral iron supplements, I will be going for two iron infusions within the first two weeks of December. Many thanks to my fellow long hauler and dear minx of a friend Steph who listened to my complaints of significant hair loss, new onset headaches, and bizarre changes to my fingernails and suggested I get my ferritin checked.
Lastly, I am still sitting with my post-election feels and trying not to let that dysregulate me. Reading things like The Message, the latest by Ta-Nehisi Coates, and this post by Michael Moore has been helpful, both because they serve as a not-too-activating WTF?!, but also include tips on how to stay kind, calm, and focused for what’s ahead. (I purposely didn’t embed the graphic of Moore’s post here, because his title is a little off-putting, but do check it out because the content is spot-on).
Also, check out
’s post Why I’m Not Panicking if you want a long COVID-adjacent hot take on managing crisis, uncertainty, and turmoil.Worked out some kinks, now onto the links 😉.
The Antidote #28
COVID, Long COVID, and ME/CFS
🦮 Comprehensive guide to long COVID: just launched by the COVID-19 Longhauler Advocacy Project.
🩺 ME diagnosis: do you know the difference between ME and ME/CFS?
shares more in this excellent post.🔬 Long COVID research: this entire special edition of Science Translational Medicine was dedicated to several areas of LC research.
🥼 More research: The Sick Times did a live, running blog of the many hours of PolyBio’s Fall 2024 Symposium on LC research, and it is worth a scroll.
🧫 And more research: this edition of The Long COVID Weekly Newsletter had some eye-catching studies. Give them a subscribe; they sift through research and other articles so you don’t have to!
💉 Vaccine hesitancy and religion: an interesting cross-sectional analysis.
🔥 Wildfire smoke and COVID-19: significant increases in respiratory illnesses following exposure to wildfire smoke, as discussed in this article (free MedPage Today account required).
💻 AI and long COVID diagnoses: this study shows that AI phenotyping reduced bias and improved the precision of LC diagnoses, and showed that around 23% of Americans could have LC. Fascinating use of AI!
🫀 Coronary Artery Disease and C-19: This study concludes that hospitalization for COVID-19 represents a coronary artery disease risk equivalent, with post–acute myocardial infarction and stroke risk particularly heightened in non-O blood types. (Apparently type A blood carriers are up to 20% more likely to be infected by COVID than type O carriers. I’m in the A group and Baldy’s in the O group, and maybe this helps explain why he’s still a NOVID five years in).
🔌 Grounding or earthing: Did you know that you can increase the electrons in your body that can help with energy transport and healing simply by letting your skin touch the grass or a tree? I’m putting this blog post by Dr. Eleanor Stein here because you sometimes read about it in LC and ME/CFS recovery spaces. Or if you prefer video/audio, click on this link and choose Dr. Stein’s tip of the month for November. She is an expert in ME/CFS and had decades of lived experience with it before recovering.
Webinars/conferences/podcasts/videos
🦠 RECOVER Research Review webinar: "Persistent SARS-CoV-2 antigens and correlation with Long COVID symptoms: Findings from a multi-cohort study” on Tuesday, December 10th at 12pm ET. Register here.
🥵 Neurovascular Dysregulation During Exercise in ME/CFS and Long COVID: a recording of a webinar by Dr. David Systrom, sponsored by the Institute for Neuroimmune Medicine at NOVA Southeastern University in Florida.
👩🏽💻 Upcoming research webinar: On December 3rd at 2pm PT/5pm ET, Solve M.E. President Emily Taylor and Dr. Leonard Jason will lead the webinar, "The Future of IACCI and Long Covid Research: ME/CFS and the Unfinished Work of the COPVS Task Force." This webinar will cover the Task Force findings and what they signal for the future of research on ME/CFS, Long Covid, and other infection-associated chronic conditions and illnesses (IACCIs). Register here.
🌛 Menopause Hormone Therapy webinar: Busting Myths, Learning the Facts & Advocating for Yourself. December 13th at 1pm ET. More info and registration info here.
✨ Chronic illness recovery small group series: The Liminal Space of Changing Identities Small Group Series is for those on a healing journey where you are no longer unwell but are not yet fully recovered. Hosted by healing practitioner Moon Teitel. More info here. (Note: there is a significant cost for this program).
💗 Pulse oximetry for BIPOC folks: we’ve discussed this several times here at The Tonic, but pulse oximeter readings often give false-normal readings for people with darker skin. Watch this short video to learn more.
🧠 Brain retraining: Debunking eight myths with Raelan Agle. This is a great video to watch if you are unsure what brain retraining for long COVID or ME/CFS is, or if you think you know what it is and have dismissed it (note: one of the debunked myths is that these programs are saying the illness is ‘all in your head.’ Not true at all). I have posted about brain retraining before; I personally have benefitted from learning about it and practicing it, but everyone needs to choose what feels right to them.
Health miscellany
🪱 RFK, Jr.: let’s start here, with major public health groups slamming his nomination to be head of Health and Human Services, and also his potential impact on vaccines.
❤️🩹 The Future of Public Health—or Lack Thereof—Under Trump.
💰 Health insurance in the U.S.: Nearly one in four U.S. adults have health coverage all year but are underinsured, facing high out-of-pocket costs and deductibles that force many to skip needed care or take on medical debt. I don’t have hope that Trump or RFK, Jr. will fix this.
🚼 Black infant mortality rate more than double the rate among white infants, according to the CDC. How is this still a thing? Tragic.
😔 Loss from chronic illness: how one rheumatoid arthritis patient copes.
🥕 Carrot recall: more products announced.
🍦 Greek Yogurt vs. Regular Yogurt: Which Is Healthier?
🫰 Social Security overpayments: problems remain. I recently had my Social Security disability approved and I immediately suspected an overpayment. I called. I went down to the office. I made three people tell me I wasn’t overpaid. I got all of their names. I do not want to FAFO, as the kids say.
♋ Hodgkin vs. Non-Hodgkin Lymphoma: What's the Difference? I have always wanted to know, but TBH, I don’t think I’ll remember even after having read this article…sigh…
☠️ Life expectancy disparities: super interesting analysis of ‘ten different Americas,’ based on race/ethnicity and where you live.
🦟 Gaza bombardment worsens superbug outbreaks. Israeli blockades and bombings have left doctors without basic medicines to treat infections.
🛑 Sexual assaults at hospitals: why they’re up.
🌏 Asian American representation among doctors: Laotian American, Cambodian American, and Filipino American individuals were underrepresented at each stage of the physician workforce pathway.
🧑🏽❤️👩🏽 ChronicHue, a global online community supporting BIPOC individuals with rheumatic and chronic illnesses. Read more about it here.
Now stick around for…
🥳 The After-party 🥳
Added resources, joy, tomfoolery, and buffoonery
🐒 I told Baldy at dinner one night this week that he looked like a monkey eating a banana. Then he asked: do monkeys even eat bananas? I took to Google and here’s the answer.
🫤 Is it just me, or has Saturday Night Live really sucked donkey nuts this season? Nope, not just me. Beyond the comedy not working, this piece drove home some important points: Dissociation, Misogyny, and Saturday Night Live in Authoritarian Times. My Peacock subscription was about to renew and I canceled it. Lorne Michaels needs to go enjoy retirement and pass the reigns to Tina Fey or Michael Che.
🙃 You’ve heard of the Nobel Prize, but do you know about the Ig Nobel Prize? Read more about it in How a silly science prize changed my career.
💯 Are you a perfectionist? Well, stop that shit right now (ha! pot-kettle-black, here). Seriously,
who writes here on Substack has a post on recognizing if you are one and how to break the cycle. I dare say it’s (near?) perfect!🧠 Kaela Singleton, the president of Black in Neuro, mentors the next generation of underrepresented scientists. This was such a great interview. Here’s a small taste:
My Nana would say that empowerment is about commodity, capitalism, power, and metrics, but there is a power in stillness. There’s power in softness, there’s power in storytelling, and in sitting back and taking time to figure out who you are.
🤦🏻 Buffoon of the week: this week’s buffoon was arrested for a hit-and-run that killed a man in a wheelchair. (So, innocent until proven guilty? nah, they caught him on camera and he fessed up at arrest). Dr. Gwyn N. Crump (rhymes with…well, you know), you are the entire basket of deplorables (and that’s saying a lot after seeing the cabinet noms this week).
🏆 Winner of the week: it’s The Onion, the hilarious satirical news site, for buying Infowars, the far-right conspiracy theory outlet driven to bankruptcy by Sandy Hook massacre denier and massive dipshit Alex Jones. They plan to relaunch Infowars in January 2025 as a parody of itself that mocks “weird internet personalities.” Well played, my friends. Well played.
🐈⬛ 💩 And finally, it’s this week’s Cat Dump.
First up: Scientists find a 35,000-year-old saber-toothed kitten in the Siberian permafrost. What a vicious little floof!
Next, Birdie helps draft this week’s post. Ever since we got back from Lake Placid in late October, during which she did not once go near the new pet sitter, she’s become an appendage to me. But I’m not complaining; she’s the (freakishly) softest cat in all the land.
Saving to delve into more later. Thank you, Amy. Gentle hugs and Yays for reduced fatigue. Squirrel-drama was so cute!
The second best thing in this post is the news that The Onion has bought InfoWars. That gem has slipped by me this week. Brilliant. Just brilliant.
The first best thing is your 35 minute walks and reduced fatigue. I’m so pleased for you, Amy. I’m celebrating quietly but sincerely without any ra-ra-ra. Big love to you, my friend. Both these bits of news have brightened a very dull and windy Saturday. Xx