Long haulers fight back
We were abandoned, defunded, and within hours, refunded. Plus, more tears and detachment, and the Antidote #34.
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.
If you are new here and curious about the tools that have been helping me in my long COVID recovery, please check out the Recovery Tools series tab on my Substack site. (Please start with part one, as it includes an important disclaimer about how highly individualized recovery tools can be with a heterogenous illness like long COVID).
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 or this Throne wish list (for those who are loath to support Amazon). 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!
Well, phuuuuuuck……………..
Oh, friends. This week has been a scary, unprecedented, shitshowy rollercoaster. By now you’ve probably heard that the Musk administration shut down the HHS Office of Long COVID. Here’s a note I posted about it on Substack a few days ago.
The Sick Times article Trump administration set to abolish the Office of Long COVID Research and Practice delves into the impact of this closure, at a time when COVID is still causing 1,000 or more deaths each week during peak times and long COVID prevalence is not declining, especially among already marginalized groups, according to this study.
RFK Jr. brazenly lied in his Congressional confirmation hearing about the administration continuing to prioritize long COVID in its “Make America Healthy Again” campaign, in which he promised to focus on addressing chronic illness. And the message is clear: not only does our new “leadership” in the U.S. truly not care about understanding and finding solutions to this disease (to say absolutely nothing of ME/CFS), it wants us to disappear.
Go away, shut up about your suffering, don’t ask us for help, and maybe even just die while you’re at it.
Culling the herd. Isn’t that what the eugenicist, fascist founding fathers of Nazism did?
Here’s a quote from The US right is coming for disabled people. Here’s why that threatens everyone: “The play-by-play is always the same: social media followers take their marching orders, hurling discontent at the specified targets and regurgitating talking points. Eventually, the ideas become so ubiquitous they are adopted by politicians who use them to engage their base. Finally, the talking point becomes the policy itself, and politicians claim they have a mandate from the people to justify stripping away the rights of the marginalized.”
Fascism, technology-enabled, 21st century-style.
The news got bleaker (and then less so) as the week went on, so much so that I’ve had to make more updates to this post each day than to any other before it.
10,000 staffers from the Department of Health and Human Services, slashed. What happens to the many thousands of unemployed workers from across all the federal agencies that Elon and his teenage cretins at DOGE are heartlessly and illogically terminating?
NIH cancels RECOVER grants for long COVID projects. This funding was ALREADY ALLOCATED and mostly spent. Many of these studies were near completion, with only data analysis and write ups left, but were told with no explanation that the funding stops immediately. What a massive waste of taxpayer resources, researchers’ precious time and expertise, and above all, hope that there will be answers and treatments in our lifetimes for the millions of adult and child patients suffering.
And then, at the 11th hour (literally, I have had to pull up this post just before bedtime Friday night), this from The Sick Times: UPDATE: RECOVER Long COVID pathobiology grants restored.
Anyone else getting whiplash??
Advocacy, advocacy, and more advocacy
In an earlier draft of this post (circa just 3pm yesterday), I had originally written, “for what it’s worth, we still have a voice, and we need to be as relentless about raising it as spoons allow.” Now it seems that a critical mass of us made enough noise that the NIH, within one day, reversed its decision to slash our funding.
Just today, I was complaining to Baldy that even some of the most conservative administrations of the past eventually funded HIV research into causes and treatments. And he responded, “that’s because activists made enough noise back then.” To which I responded, “that’s true, but Long COVID activists are in the millions and have been organizing and making ALL sorts of noise! And in the age of the internet and social media, to boot!” (to be fair, he didn’t know that - as many healthies don’t).
Let’s keep up the noise. While the NIH restored the existing funding, the outlook for additional and necessary research dollars isn’t looking great. Here is an Action Network letter writing campaign to stop the erasure of Long COVID in real time. It only takes a moment to shoot this letter off to all of your federal Congress people.
I have also been spending the last week calling all of my state representatives here in NY, as our misguided governor is trying to work a mask ban into the state budget at the last minute (If you reside in NY, please visit Jews For Mask Rights to get all the scripts and phone numbers you need to advocate. These calls are easy to make and both my state senator’s and assembly person’s office have told me they are very interested in what their constituents think about this).
Saying nothing is a choice. It sends the clear message that we’re okay with all of this. That we won’t fight or speak up. And that is exactly what they want from us. That is how fascism quietly spreads.
Keep speaking up; vote when it’s time. We can do this.
Closer to home on the “well, shit….” front
If you were around two weeks ago, you may have read my post On Tears and Detachment, where I discussed Baldy’s retinal tear and impending detachment, subsequent stupidly expensive out-of-pocket surgery, and info on what to be on the lookout for (bad optics pun intended) in case your own retina decides to skip town.
Everything went smoothly with his recovery for the first two weeks or so. And then he started seeing a new, crescent shape in that eye. He had been seeing light floaters the first two weeks, which the doc said was normal, so Baldy thought this crescent might be normal too. After a few days, he reached out to the doctor’s office and they’re like, “get your ass in here TODAY,” a few days ahead of his next follow-up appointment.
I am (angry, sad, frustrated, confused? pick one) to report that Baldy is among the “lucky” 6-8% of people for whom the first attempt to re-attach the retina does not work. If you’re keeping track, that’s terrible news with a $10k price tag.
And so, another surgery called a vitrectomy is needed. By the time you’re reading this, it will have already happened. I will spend the next few weeks playing nurse and go-fer.
The good news? This time the surgery happened in a local hospital operating room (so, not in NYC and, most importantly, covered by insurance this time).
The UGHHH news? Baldy has to remain FACE DOWN, day and night, FOR TWO WHOLE WEEKS.
Naturally, he’s not at all looking forward to…looking down for so long. I don’t blame him one bit. A few months ago, I hung my head down to paint my toenails for 20 minutes and had a crick in my neck for weeks after.
Also, how boring, amirite?
Fortunately, they have equipment that resembles all the massage chairs and apparatuses you’ve ever seen just for vitrectomy recovery, including an adjustable mirror that allows you to reflect the TV back to your good eyeball. So he’ll be able to watch TV, read, and listen to podcasts. Not the end of the world, though still not super comfortable.
Pro-tip, should you ever find yourself in vitrectomy territory: the equipment rental costs are pretty high, and not covered by insurance (sick bastards). I went on Amazon (I know, I know - evil corporate overlords and such - but money’s about to get real tight here with Baldy out of work for several weeks, so back off for a bit) and ordered cheaper versions of most of the equipment he’ll need for sitting, sleeping, and TV watching for about half the cost of the two-week rental.
Please send us all your good juju for the next few weeks. He needs it as the patient whose retina will be cauterized to his eyeball with a laser and then forced to hang his head for two weeks. I’ll need it as the energy-limited spoonie who will now have to do all his outdoor chores in addition to my existing indoor chores, as well as fetch him what he needs, drive him to all appointments, and serve as moral support.
Oh, and continue to hand-feed our skinny little 15yo stage three kidney disease feline patient every hour, making sure she keeps going. She is Baldy’s girl, so they are a package deal as far as my nursing goes.
The bright side? This vitrectomy is not life-threatening. We will get through it. Also, although I don’t love being disabled and out of work, at least I’m disabled and out of work (and around to help). I also have a bit more energy than I would have had a year or two ago. And I just so happen to have a lighter schedule the next few weeks as far as my usual obligations go.
In the words of Irv from Severance (the great John Turturro), we will…
Hope to see you all back here in two weeks.
Now for some links.
The Antidote #34
COVID, Long COVID, and ME/CFS
💰 Long COVID costs: could be between $2 billion and $6.5 billion annually in the U.S.
5️⃣ Five ways the pandemic changed us: great to see long COVID included in this list.
📃 Long COVID fact sheet: a helpful PDF put out by the Patient-Led Research Collaborative.
🤧 Reinfections: how they could be causing silent long-term organ damage beyond long COVID. Wear a mask in crowded indoor places, at the very least.
🦠 Post-viral syndromes (PVS): a guest post by
on .🧠 Long COVID and dementia drug: a study found it didn’t help with fatigue or psychological symptoms (free MedPage Today account required to read).
🚸 Long COVID and youth: a new newsletter called The Long COVID Chronic-Ill.
🫨 Sensory disruption: a great post and podcast by
on how long COVID can disrupt sensory integration. For the first several years of my LC, I was extremely sensitive to loud or repetitive noises, particularly when several different sounds were happening at once. My brain couldn’t make sense of them all, and my nervous system received this as a threat; I would sometimes run out of a room in tears, a literal ‘flight’ response. Thank you, Dr. Khan, for covering this important topic.Webinars/conferences/podcasts/videos
🫀 Online course on POTS: Dysautonomia International and Stony Brook Medicine are hosting this full-day CME (continuing medical education) course on April 26th for medical professionals, but anyone is welcome to attend. Information and registration can be found here.
👩🏼💻 Sjögren’s Disease: Dysautonomia International is partnering with Johns Hopkins University on this webinar on April 7th at 7pm ET providing an overview of Sjögren's disease, including the impact of symptoms, diagnosis, treatment options and current research. Register here.
💻 RECOVER seminar: Effectiveness of Paxlovid in Protecting Against Long COVID: EHR Insights, to be held Tuesday, April 8, 2025, at 12:00-1:30 pm ET. Register here.
🤓 Improving cognitive function: Dr. Eleanor Stein’s video tip of the month, which you can find on her website here. You can also check out her tips from other months, relevant to anyone living with or recovering from long COVID, ME/CFS, and related conditions.
🌞 CFS recovery: Raelan Agle with a short video on the ‘golden rule’ of recovery.
👨🏼🏭 ME/CFS and return to work: Alex Howard with tips for gently returning to work.
🌄 Don’t let anyone tell you “recovery isn’t possible”: helpful words from Dan Buglio.
Health miscellany
🙉 Noise and our health: this article from the BBC on how excessive and loud noise could damage our health could go hand in hand with the post above from Dr. Khan on sensory overload.
🧫 Preventing Autoimmune Diseases: new vitamin D, omega-3 findings.
🥵 Hot flashes:
with an informative post on why these could be more than just annoying.📺 TV and your health: Is your favorite TV show spiking your blood pressure? 4 signs that your viewing habits might be stressing you out too much (more below on the Severance finale that was a lot for my heart to handle!)
🩺 Medical gaslighting and women: For Some Women With Serious Physical Ailments, Mental Illness Has Become a Scapegoat Diagnosis. From the article: “It comes back down to this idea that women are just not good narrators of their own experience,” Wetzstein says. I do resent the advice that women bring someone along with them to basically restate what they themselves have already told the doctor. Fuck the patriarchy, seriously.
🧬 23andMe: Here's how to delete your personal data and genetic sample. As soon as I cut and pasted this link, I went and did just that.
🩼 Gaza child amputees: struggling with recovery, especially after Israel's cutoff of aid. The attacks on Gaza have created the “largest cohort of child amputees in modern history,” according to the U.N.’s humanitarian aid organization OCHA. What a stain on the Israeli government, which obviously doesn’t care. In better news out of the region, Israeli and Palestinian scientists continue collaborations amid conflict.
🤳🏼 Smartphone addiction: and now for first world problems, our brains are rotting due to these phones.
🍺 Guinness: is it really good for you?
🍴 Frozen meal recalls: Check your freezer for Stouffer's and Lean Cuisine Meals.
🧑🏼🚀 Astronaut health: how they adjust back to earth after being in space for so long.
😊 Trans folks and depression: a study showing that gender-affirming hormone therapy associated with lower rates of depression. Let the people be happy!
🏳️⚧️ Trans folks and HIV: another recent study shows that in people with HIV, hormone therapy for gender-affirming care was associated with lower rates of HIV seropositivity and viral non-suppression. That’s pretty amazing.
👶🏽 Birthing care inequities: American Indian and Black individuals delivered babies at lower-quality hospitals compared with White individuals, while there was no significant difference for Asian and Hispanic individuals. The disparity between Black and White individuals would have been reduced if all patients had delivered at their nearest hospital.
🦷 Flossing:
asks if it can help prevent cancer, dementia, and stroke (my guess is both the dance AND the dental act can, lol).🍒 What is your relationship with food?: Nutritionist
explores this in Relationship status: It's complicated. Give her a subscribe and order her new book! (it’s on my TBR shelf as I type).😌 Illness acceptance:
talks about a new book that says that telling your story can have the power to heal.Now stick around for…
🥳 The After-party 🥳
Added resources, joy, tomfoolery, and buffoonery
🤯 That SEVERANCE season two finale, amirite??? WOW WOW WOW. The nervous system of yesteryear’s long hauler me could not have handled that riveting, action packed hour and a half. Here’s the Severance team talking about Mark’s choice right at the end (and there’s a season three in the works - thank Kier!). Also, how much do Severance’s macrodata refiners get paid? And last but not least, DO NOT MISS this podcast with the actual neuroscientist who consults on the show. Supremely fascinating!
❤️🩹 Spoonie romance:
with a fun post on dating while diseased.🤪 Have you heard of “Trump Derangement Syndrome”? The Minnesota Republicans are trying to pass a bill to create a new mental illness. Apparently, they know so little about psychology that they’ve never heard of the term ‘projection.’ Here’s Psychology Today with some ‘splaining.
Projection in psychology refers to the process by which an individual unconsciously attributes their own thoughts, feelings, or behaviors onto someone else. It is a defense mechanism identified by Sigmund Freud, where undesirable traits or impulses are projected onto another person or object.
😒 Is America great yet?: the 2025 World Happiness Report shows U.S. in lowest-ever spot on list.
⛷️ Go, Lindsay! The 40yo skied her way out of a five-year retirement to a second-place podium finish in the super-G at the recent World Cup Finals. Amazing!
🤦🏻 Buffoon of the week: there were SO MANY choices this week, mostly from the clown car otherwise known as the new U.S. administration. I’m going with the one less prominent in the news cycle: vice president J.D. Vance, who was publicly a disgusting, disrespectful dipshit to his wife while she stood two feet behind him.
🏆 Winner of the week: I don’t watch the show, but this caught my eye. Jeff Probst, host of Survivor, delicately and thoughtfully asked a contestant about their disability (in this case, stuttering) and how they want to be interacted with. I thought he did a great job.
🐈⬛ 💩 And finally, it’s this week’s Cat Dump. Just a little sweetness from the indoor three.
Amy,
So sorry about Baldy's retina and all that it entails! Yikes.
Comment on Raelan Agle's video and the Golden Rule: She's right on about backing away from fear. Fear induces stress which causes inflammatory conditions in the body. Inflammatory conditions cause pain and tissue damage. But here, as in other situations, I think that is useful to understand the root causes.
Similar to what I've mentioned in various posts recently, looking squarely at a stressor and naming it helps. Just that step changes the way that the brain perceives stressors. It takes away the vagueness. It gives you a sense of control and agency.
With so many healthcare resources potentially being limited by the administration, it's critical for all of us to stick together and to educate ourselves about our challenges and the solutions.
I'm working on a piece right now on 'random acts of kindness' which, incidentally DO improve the wellbeing of the actor. Interestingly, just recalling some act that you performed in the past can do the same thing for your brain. Think about all the kindness your heaping on Baldy!
Thanks for all the updates and advocacy, Amy. I sent an action network letter (feel like I have been sending a lot of those lately!) I’m sorry to hear about Baldy’s retina and hope his recovery goes smoothly. Hugs to you!