Turns out, the mobility fairy doesn’t come down from her perch next to Helen Keller and match someone up with a device once she decides it might benefit them. That may sound outrageous, but it seemed more plausible to me than what actually happened: absolutely nothing.

No one asked me anything. I had to figure it out on my own.

Twice in January 2022, I needed to see a provider whose appointments were only available inside a large university hospital. I wasn't struggling with mobility at all at that point, but as I wove through the elaborate maze of check-in procedures twice in a row, I thought to myself: “It sure would make things easier to have a place to sit down while doing all this.”

On the second visit, as I waited with my paper number in my hand, I saw a man mosey into the hospital entrance with the coolest mobility aid I had ever seen. I snapped a discreet photo so I could track it down later.

The device was black and white, with a noticeably modern look and the word “NITRO” on the frame. As a chronic list maker, I grabbed my phone to add it to my list and quickly realized I had no idea what “it” was called. I settled on “NITRO walking thing” and hoped that would be enough information to price it out later.

Later that day, I learned what a rollator was.

The fixation on this particular rollator took me by surprise. I was perfectly capable of walking on my own. Mobility was not an issue. But suddenly having a portable, rollable chair had an instant appeal that nearly consumed me. I thought of specific situations that presented difficulties I hadn’t thought were solvable. For example, my children enjoyed playing with their friends after school, and I thought it might come in handy while gabbing with other parents. Maybe I could just enjoy it, instead of worrying whether I should rush home to rest or sit in the grass and get ant bites on my ass.

It felt like overkill, but I ordered it later that evening. I felt silly buying something I didn’t think I needed, like I was investing in an entire hair salon just to make brushing my hair easier. Part of me wondered if the shop would even verify my disability or ask my follow-up questions on how I plan to use it. Is it illegal to buy something if you aren’t even going to use it the “right” way? What if everyone started asking me why I needed help walking? (These silly questions are called “internalized ableism.”)

The same happened with my wheelchair. I had to hit the doctor with a whole “hear me out” as I described why I thought a wheelchair might improve my quality of life and hoped he would at least entertain it, despite the fact that I didn’t fit what I assumed was the “typical” profile of a wheelchair user. He agreed with me.

About six months later, we had it figured out, and I was the proud new owner of a foldable, reclinable power wheelchair covered by Medicare at 80%. (It’s worth pointing out that while this part was fairly simple for me, that is not everyone’s experience.)

Soon, I began noticing more and more aids around me, including devices that didn’t seem like disability-related devices at first.

• rollator

• cane

• wheelchair

• cruches

• walker

• electric wheelchair

• hand controls

• ramps

• scooters

• motorized beds

• grab bars

• braces

• stair lifts

• golf carts

• traction mats

• kitchen gripper things

• electric toothbrushes

• straws

• toilet seat height adjusters

• motorized bed

• shower stools

• detachable showerheads

• medicine fridge

I purchased a few additional items from this list because I suspected they would come in handy in my own life. My favorite, by far, is my detachable showerhead.

The One Question

No matter what age you are and regardless of the situation with your body, there is one simple question to ask if you are wondering about mobility aids. Have you *ever* thought to yourself…

“I wonder if this <insert mobility aid> would be useful to me?”

Just asking the question is the bar. That’s all it takes to seriously consider trying out that mobility aid. (The reality is, healthy people don’t wonder if mobility aids might benefit them.)

And no, it doesn’t matter if you don’t look like the person who usually uses that thing. Or if you are using it in an atypical way or for an atypical reason.

If you’ve ever thought about it, then it’s time.

One of my greatest achievements in life was using mobility aids as soon as they made sense to me, instead of waiting around until it felt “obvious.” Being an early adopter gave me plenty of time to experiment with the best way to improve my quality of life with mobility aids—before I declined any further. I learned how accessible Amtrak was and could take “walks” around the block—things I never would have thought to do before. (Unfortunately, my physical decline has made both of these things impossible now, but at least I have no regrets about doing them when I could.)

So if you are among the handful of folks sitting around wondering, “How do I know when I get a mobility aid?” The answer is you talk to your doctor as soon as it occurs to you.

If this resonates with you—then welcome—you are one of those people.

I have been a customer of John’s store, The Hemp Company, for about a year and a half. He sells me the hemp-derived products I use to help manage my chronic illness, ME/CFS. There are many good people who help me maintain a tolerable quality of life: my doctor, my home health nurse, my staff of 3 household helpers, my pharmacist, and John Boccella.

Today, I received an email from his business with a major update on NC’s imminent ban on these products. Because I am who I am as a person, I decided to hop down an internet rabbit hole, start a spreadsheet, and introduce myself to John to see if he was willing to answer my questions. By the end, we were both fired up: John’s about losing his business, me about losing access to safe, tested, locally grown hemp (and also John losing his business).

I’m going to summarize what is going on to the best of my ability—be patient with me; brain fog is one of the prime symptoms of my illness, so these sorts of essays are very difficult for me to organize. Feel free to skip to the bottom for the list of what you can do to protect NC’s access to hemp products.

What is the bill we are talking about?

There is no way for me to fully clarify the different bills in a way that will make sense, and I believe that’s by design. Specifically, I suspect it’s designed that way by Republican Senator Bill Rabon, but put a pin in that.

Last year, two new bills were drafted in NC.

1. Senate Bill 265 (SB265) is a true hemp regulation bill that preserves what is currently offered in the state of NC, protects children, and controls product testing and licensing of product sales. The hemp industry has support for this bill, but it’s stalled (looking at you, Rabon ::cough cough::). We support this bill, but it’s moot because no one will vote on it until Rabon is willing to put it up for a vote.

2. House Bill 328 (HB328) was originally drafted by Democrats to ban hemp in schools, which seems like a fairly reasonable goal. Once it went through various revisions by other people, it morphed into a bill that LOOKS like a regulation bill, but is so, so much more. (The devil is in the details.) THIS IS THE BILL THAT WE NEED TO CARE ABOUT RIGHT NOW.

3. Senate Bill 328 (SB328). A third bill? What? This Republican-authored bill is summarized as “Age 21 Hemp-Derived Consumables.” Maybe it’s a coincidence that it’s got the same number as HB328 to sow seeds of confusion; I don’t know. I know I have to go through a complicated online process to verify my age to purchase from John’s store, so it’s certainly not easy to get hemp while under 21. We’ll set this bill aside for now too—there haven’t been any updates on it since last year.

Now that we have none of that straight, let’s move on to HB328 anyway, which is the middle one.

What happened recently?

Last week, HB328’s most recent revision (the one that looked like a regulation bill but was so much more) was sent through a “conference committee.” Apparently, that’s a little rendezvous of the Senate/House members who actually do the real work of writing words on the page. Maybe it’s normal for this to happen, but none of the original Democrats who sponsored the bill (about keeping hemp out of schools) were on this committee.

The committee was comprised solely of Republicans and led by none other than Bill Rabon himself. Imagine their surprise when they saw the revision, which was an entirely different bill.

I am not usually in the business of judging anyone by their appearance, but look at this man and tell me that he does not look exactly like a sneaky little Republican.

That conference committee report is now the bill (or something like that), and the NC Senate passed it on Thursday, July 2, 2026.

They didn’t just pass it. They PASSED IT PASSED IT. With a vote of 37-6, only a few lone Democrats voted no.

So doesn’t that mean it’s maybe a good bill if there is strong bipartisan support?

I’m going to level with you. Legislators don’t read bills super well. Their aides do and report back. They listen to each other about what to support. (THEY LISTEN TO THEIR CONSTITUENTS.) Sometimes, they just go by vibes. This infuriates me, but do you read the terms and conditions? Your mortgage paperwork word for word? People don’t read important shit they care about all day long, especially when it’s 10+ pages, 12 pt font, double-spaced, Times New Roman. Unfortunately, human lawmakers are also human.

What does the vote tell us about what’s happening?

Based on firsthand reports of people who listened to the vote on Thursday, those senators did not sound informed. Apparently, one NC senator said he was bored. When another asked a question about whether this would harm small businesses, someone else just plain lied and said it would only affect the sketchy businesses. False! It’s going to affect EVERY SINGLE ONE of them.

Hemp will just cease to exist in North Carolina this winter if HB328 passes.

There was also chatter about how hemp is killing children, highly addictive, and toxic. And apparently, “hemp sellers are preying on low-income people who are drug addicts.” Haven’t we heard these tropes before? These are not facts—they are the bumbling opinions of some old Republicans, hoping they can pass this before anyone figures out what is happening.

The Senate voted on the vibes and lies they were told. When the House receives the bill, it needs to READ it before it votes on it.

NC does need hemp regulation; it doesn’t need a hemp ban. (If anyone is interested in a great starting point for hemp regulation in NC, might I suggest SB265, which already exists and is supported by both the hemp industry, its customers, and at least the 7 NC representatives who already took the time to draft it. Perhaps Bill Rabon can get that to vote for us soon?)

Will the products I use be banned?

If HB328 passes, pretty much all hemp and hemp-derived products will be banned, even the stuff you and I might use.

Currently, hemp products are legal if they contain no more than 0.3% delta-9 THC by dry weight. This allows for hemp-derived products like delta-8 or THC-A to be sold legally. (I don’t understand the science much beyond, but I’m sure John does!)

HB328 will cap each package at 0.4mg of delta-9 THC, which will, in practice, ban almost everything overnight. John said a handful of SKUs, such as CBD topical creams, would survive this bill.

I feel like a LOT of consumers will be surprised when they visit the dispensary in November and are met with a “permanently closed” sign or a container of CBD lotion instead of their normal edibles order that helps them sleep at night.

Where does that put NC compared to other states?

I want to be clear: I cannot be an expert after one internet deep dive, but I can read a graph, and boy, did I read graphs!

Laws are changing quickly, and they vary dramatically by state (both whether marijuana and/or hemp is legal, decriminalized, restricted, or in a gray area.

But one thing was very clear: this would put NC among the states with the most restrictive laws.

How will that affect things downstream?

They estimate that 16,000-20,000 people will lose their jobs if this bill passes, because all shop owners, employees, farmers, manufacturers, and wholesalers will be out of work.

This will cost NC about $4.4 billion in annual revenue.

It won’t even make North Carolinians safer because customers will turn to the black market or travel out of state to access products.

I completely understand that hemp and THC products are not everyone’s cup of tea, but many people rely on them and for good reasons.

Sure, North Carolina needs more regulation of hemp products, and a ban will set us back dramatically.

What can I do?

Within the next week, contact your NC House representatives because HB328 goes for a vote as soon as July 27. You can search for your representative by address here.

(Don’t bother with the NC Senators unless you want to tell them you are disappointed in their reading comprehension, for they have already voted.)

These are the same folks whose names we see on the ballot during election season. These are real humans who actually listen to the folks who are willing to pick up the phone. Even in 2026, those phone calls matter.

Need a script? Here’s one:

I cannot stress enough how many other things I would rather write about. My energy is too precious for this nonsense.

But it’s important for me to go on the record to say that these products are important to me and my quality of life as a chronically ill person. I know I am not alone.

And if you care about what’s happening, feel free to share my summary and script with those in the same boat.

I was curled up, reading a book in the glow of my Kindle and massaging my hip and thighs with a Theragun last night. It’s something like a motorized thumb that moves up and down in a percussive, pounding motion. As a self-massage tool, it can’t be beat. (Pun very much intended.) As I lay there working through a mental map of my hips and legs, I was reminded of how much my daily routine resembles an athlete's.

For starters, the Theragun is something you might find in a World Cup training gym, a Cross Fitters’ gym bag, or a physical therapist’s treatment room. I honestly spend more time than you might expect thinking about wellness. In fact, for a bedbound person, I could probably hang with the hardcore wellness folks. (I have ME/CFS, which prevents my body from making enough energy to live a normal life. I spent nearly all of my time resting in bed because exercise is contraindicated in ME/CFS. For me, even standing up to make dinner for 15 minutes is more than my body can manage most days. You can read more here about how ME/CFS works here.)

And even then, I’m borderline obsessive about ensuring my body is as healthy as possible. Imagine how hard that would be if you couldn’t move freely beyond your home’s borders? (Also, imagine how hard it is to maintain mental health under those circumstances, too—but that’s a separate conversation.)

If we’re being honest, there are people reading this who have a stereotype of sick people as lazy. They feel a quiet smugness about what they would do if they were sick. They would try like hell to get better—and not give up until they did. Ergo, what are those people doing wrong?

There is a point at which no amount of effort can overcome a hard physical limitation—bodies have finite limits, some more than others. I can’t make dinner any more than my 95 year old grandmother can drive a car—it’s not a skill or a motivation issue. Anyone can put in effort to be “healthier,” but there is no guarantee that it will eliminate illness or heal disability. Despite what society is constantly reminding us, being “sick” and being “lazy” are two totally separate concepts.

You know what I feel smug about? The extreme lengths I go to be the healthiest version of myself possible. It’s not a contest with anyone else. But let’s pretend for my own selfish benefit: I’m winning simply because I have to be so much more creative than everyone else. There are no gym machines or no online yoga videos. There isn’t even a walk around the block after dinner. I can’t even find guidance online for people like me.

Sometimes I feel like I’m being asked to the do the equivalent of having to make dinner without using any food ingredients. Is this a joke? Am I being punked? I’m supposed to maintain a human body without much MOVEMENT?

Nevertheless, she persisted.

Over the last month, here’s all the stuff I have done in pursuit of my “fitness and wellness goals.”

• Meticulous attention to keeping my body in a neutral position at all times to prevent long-term wear and tear.

• Daily stretching of various muscle groups. Over the course of a week, I am to work on ankle, hip, shoulder, and spine mobility. I have a “stretching program” that I had to create myself because no one specializes in this kind of wellness. (It’s like watching House when you are both the patient and Dr. House.) The exercises are mostly done lying down and are designed to counteract the ways my body stiffens from forced immobility. I use the holy grail of stretching tools, the Castleflexx.

• Fascial massage using a Backnobber and Theragun. I was diagnosed with Ehlers-Danlos Syndrome (EDS) many years ago. EDS happens when the factory runs out of healthy connective tissues and begins replacing them with glue, sawdust, and hair from the kitchen sink. I have a milder case, so it doesn’t affect my daily life significantly, but keeping my fascia in good working order has proved pretty important to proactive pain management.

• Regularly lying on an incline to decompress my spine.

• Intentionally moving my body to find areas that feel tight or less mobile and find ways to work those areas. Noticing when functional movements feel more difficult and working to improve mobility in those motions.

• Paying attention to nutritional intake, including protein, fiber, and vitamins. I brainstorm increasingly creative ways to increase my fruit and veggie intake without the ability to cook or easily get to the store. I cannot stress enough how difficult this is when you don’t have the physical energy to stand in the kitchen long enough to prepare a small meal.

• Thinking through bone health and how best to keep my bones strong and healthy. Physical stress from walking, running, and jumping communicates to the bones: “stay strong, you guys, we need you!” Without the freedom to exercise, I do silly things to make sure my bones get a little of that sensory input. I’ll go down the stairs “aggressively” or jump up and down a few times when I get up. I have no idea if this is helpful, but it makes me feel like I’m doing something, which also feels important when so much is out of my control.

• Strength training in limited ways. For example, we live in a split-level house, so I am grateful to have a little half-set of stairs that aren’t too physically demanding but keep my muscles strong. I will also do some light bodyweight strength exercises, doing only a few reps at a time to keep my heart rate from elevating. I can use a water bottle or whatever else is handy to add weight, if I want to. (I usually do not want to.)

• Meeting with both a PT and an OT who specialize in working with homebound people. Verdict: Because I am mobile, I do not qualify for services. That makes complete sense because resources should be reserved for the bedbound people who need therapy to restore mobility. (I still wish I could have an at-home PT, though.)

• Finding a massage therapist who will visit my home and do deep tissue massage in my living room.

• Data analysis from wearables to help me with pacing aka protecting myself from overexertion. I have a decade of Fitbit data that shows my activity levels, reflected in various numeric formats: active zone minutes, steps, and sleep. I’m regularly trying to figure out ways to improve this by trying different wearables. (I’m almost done working through them all and plan to write a review soon. Feel free to subscribe if that’s interesting to you.)

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• Purchasing items like electrolyte drinks, very specific supplements, protein shakes, and KT tape.

• DOING ALL OF THIS WHILE NOT TAKING MORE THAN 1200 STEPS A DAY OR LEAVING MY HOME.

I honestly feel like a wellness badass.

Granted, my professional title these days is “full-time sick person,” so it probably isn’t a huge shock that I might devote more time to health-related topics. But admit it, you probably don’t think of chronically ill people as wellness badasses, do you?

I don’t know how much of my routine is really helping. I’m certainly not “better” by any stretch, but my mobility is solid and hasn’t declined in ways that are noticeable to me after 20 months of being mostly restricted to my bed. That feels like a win, as much as someone who tackles a Couch to 5K program or lifts weights after work.

Wellness is for everyone, regardless of their starting point or how well they fit into traditional wellness culture.

Imagine the difference I will experience by proactively counteracting the literal and metaphorical gravity of this lifestyle? There is only a small chance I will ever improve enough to live a normal life, but if that happens (and even if it doesn’t), I want to have a body as functional as possible for my age.

Later tonight, I’ll probably turn on Netflix and prop myself up for a long hamstring stretching session, much like a gymnast or ballerina after a long day of dancing. While I might not be on stage anytime soon, I’m certainly competing in some kind of sport—a body that makes energy more easily than Mitch McConnell can tie his own shoes. It takes attention to detail, creativity, and dedication that only the most elite athletes can relate to. While it might not fix what ails me, it’s honest work, and I’m proud of it.

I got so frustrated reading so many bad takes on hantavirus this evening that I opened my laptop and typed this update vigorously as if to say, “That will fix everyone who is wrong on the internet!”

With that, here is my official opinion on hantavirus news.

You know how a pandemic is “oh no big disease very much?” An epidemic is the next step down. Then comes an outbreak, “oh, disease,” if you will.

Outbreaks of disease happen often. Only a small percentage of outbreaks become epidemics, and even fewer become pandemics.

Based on what I’ve read from reputable sources, there is no reason to believe the hantavirus outbreak is anything more than an outbreak. There is no reason for the general public to worry.

People are understandably worked up for a number of reasons: 1) collective COVID trauma, 2) relatively high mortality rate of hantavirus, 3) valid fear around the current US administration’s competency, 4) cruise ship illness tendency to be internet viral.

Right now, lots of nerdy virologists are contact tracing and connecting resources around the world. They know exactly how many days the infection needs to incubate, how it’s transmitted, how long it’s contagious, and how close and how long someone has to be in contact to be at risk. Smart people are problem-solving on the fly.

Quarantines, hospitalizations, and testing are all signs that the system is working as designed—not reasons to be more afraid.

For now, the most likely course is that they will work to understand what happened, how to protect people, and contain the outbreak.

But how do you know this isn’t the next COVID?

This is what this conversation feels like to me, a scientist.

I know because virus behavior varies widely from virus to virus. Each virus has its own growth patterns and agendas. COVID was contagious, easy to spread, quick to mutate, and not very lethal (as viruses go). Hantavirus is none of those things.

Of course, it’s possible for a virus to be the next pandemic in the same way it’s possible that Michael Richards could still end up with an NBA career.

Possible and likely are two different things.

But this administration is awful! Aren’t they going to fuck all of this up?

I’m sure they will find a way, but let’s slow our roll for a minute and pause for a reality check.

The hantavirus outbreak is occurring in foreign waters, and other countries have jurisdiction over how it’s handled. Last I heard, Spain has offered to dock the cruise ship and help get passengers home safely (understandably, not all Spaniards are thrilled about that).

The WHO is managing this outbreak with the help of international partners. Scientists, doctors, and laboratory techs are at the helm and following long-established protocols. These folks have trained their entire lives for this sort of event.

At this stage, there isn’t much the US government can do to interfere with all of that. I’m not naive enough to assume this can’t change or that Trump couldn’t come up with some fun new way to fuck us all over.

So let’s pretend for a moment that things go sideways and Trump tells us that hantavirus will strengthen our blood, so he is going to make sure all Americans get it to boost our immune systems (this is made up—it cannot do that.)

Hantavirus is difficult to transmit between humans, and most strains can’t even do that, so it’s not particularly contagious. Someone has to be in super close, prolonged contact with an affected patient. Hantavirus mutates slowly. It doesn’t travel through the air. The high death rate from Hantavirus complicates transmission because dead hosts don’t transmit the virus well.

If Trump wants to give everyone Hantavirus, he would have to mail us all packets of rodent feces and force us to consume them, and even then, it would be hard for him to succeed.

This virus is not a very good candidate for a pandemic at all. So even if it is mishandled, it’s not a ticking time bomb.

Each person who gets COVID passes along their infection to between 2-5 people. With Hantavirus, that number is just a tiny fraction above 0.

What if that changes?

It could. Trust me when I say that you don’t want me to make a list of all of the “far more likely and far more scary” possibilities.

This one is not high on the list.

Here’s the reality. You remember the virus playbook as going one specific way.

1. Hear about a virus in the news.

2. Weeks later, panic sets in.

3. Months later, the world literally shuts down.

4. People die.

5. Virus mutates.

6. CULTURE WARS.

7. A vaccine was created in record time, while vaccines still somehow lose overall popularity.

My point is, you can’t just swap out the word Hantavirus and expect things to go the same way. It doesn’t work that way. Every pandemic has it’s own signatures and trust me—you don’t want me to elaborate too much there.

We cannot filter every headline about infectious diseases and expect them to behave like COVID any more than we can expect every single person named Michael to look and act the same way.

The biggest mistake we made during COVID, in my opinion, was not listening to scientists. Every single misstep can be attributed to individuals and governments ignoring science.

• Listen to scientists like and .

• Listen to trusted agencies like the World Health Organization, which has been transparent about its efforts and said the risk to the general public is very low. (The WHO is a great alternative to the CDC when you aren’t sure how reliable the CDC is. That said, everyday scientists at the CDC do not agree with RFK Jr.)

• Don’t vacuum or sweep rodent droppings—clean them up with water so you don’t spread them in the air.

• Better yet, avoid exposure to rodents and their droppings entirely.

Ok, good chat, everyone. Holler if you have any questions in the comments—I’m happy to answer anything specific as my energy allows.

These are still the early days of this outbreak, so if there are any significant updates that fundamentally change my outlook, I’ll let you know.

But for now, this is a notable outbreak that almost certainly will resolve in the coming weeks to months due to the hard work of science!

“This is the BBC.” The sun hadn’t even risen. Here’s the video I threw together using the video tools of 15 years ago.

My former husband is many years my senior, and his childhood years were peppered with memories of the Apollo missions and the beginnings of the space shuttle program. I would never have called myself a space nerd, but something shifted for me that day as we felt the roar of the engines together that day.

Exactly 365 days later, our first child was born, and we hung these photos I took above his crib.

Earlier this year, I picked up Adam Higginbotham’s book, “Challenger,” after seeing it on a good friend’s Goodreads. We all know how the Challenger story ends, but Adam’s meticulously researched book manufactured a genuine suspense that left me hoping he could will another outcome by the last chapter.

I turned on the Artemis II launch and didn’t expect the exact same magic to happen as it did the day of Atlantis’s final launch. But it did.

Between hearing the voices of women in the choreographed chorus of the countdown and realizing that most people on earth—including me—have never seen a lunar launch, I burst into tears.

Why is this so magical? I’ll never understand it.

I spoke with a college acquaintance who works at NASA and designed, analyzed, and modeled three very specific parts of Artemis. He’s on other projects now, but he kindly entertained my questions about how Artemis differs from Apollo.

Apparently, a lot of the big parts are the same because those rocket engines are the most efficient ever built. He told me that the electronics are much more complex and offer additional redundancy and safety. I’m sure it’s still one of the more dangerous things a person can consent to, but it reassured me that the astronauts might arrive home as planned.

I went to grab the mail tonight and looked up toward the moon, trying to make sense of the fact that somewhere between me and it, there are four fellow human beings at the mercy of physics and the combined intellect of our nation’s most capable engineers.

I don’t think I realized how much I needed a good dose of wonder.

It’s not a location issue—I’m located in the pocket of the state between Duke and UNC—we aren’t hurting for well-regarded teaching hospitals. It’s not an insurance issue—I’ve had decent care on the NC State Health Plan or Medicare for those 20 years. I have access to the best healthcare in the country, yet it offers me nothing.

It’s exhausting feeling like the only one who knows about an illness that is more common than MS, ALS, HIV, Crohn’s disease, type 1 diabetes, schizophrenia, bipolar disorder, and epilepsy. But it’s scary when doctors look at me like I invented my own condition.

I just want a doctor who has heard of my condition and is capable of providing an evidence-based treatment plan. I’m able to educate my own providers right now, but there may come a day when I’m too ill to do anything but let them rely on their existing knowledge.

Those odds are not good.

People make other assumptions about what it's like to live while sick, too. I see the stereotypes all the time. People think I’m living “luxuriously” because I don’t “have” to go to work or get out of bed, but it’s actually a case of a good thing pushed to a brutal extreme. Anything taken too far — even relaxing in the evening — becomes distorted when it is no longer a choice.

More and more, I’ve realized how few people with this illness can talk about what it is actually like because they simply can’t talk at all—a shocking late-stage complication. That surprises people because they don’t understand what is going wrong in a body with ME.

• Cancer = what happens if a rogue growth tries to take over

• Dementia = what if the brain turns into Swiss cheese

• Diabetes = what happens when food and hormone communication systems stop speaking the same language

• Muscle disorders = what happens when muscles do too much or not enough

• Blindness = when eyes don’t eye properly, across a massive range of severity

• ME = what happens when the body’s energy production falls below the minimum required for a human to stay alive

I am critically ill — but almost exclusively in the energy production system, with a side show of immune system and nervous system dysfunction. It is not a diet issue. It is not an exercise issue. It is not an attitude issue. It is not a psychiatric issue. It’s not a positivity issue. Someone once asked me, “Have you tried coffee?” It’s not a lack of caffeine either, which I guess has to be said out loud.

And it turns out, energy failure is a catastrophic problem for the human body.

The only overwhelmingly evidence-based treatment is pacing — making absolutely sure you do not run out of energy. For many patients, including me, that means being stationary most of the day, every day.

At first glance, it almost sounds like a Mr. Beast experiment people might want to volunteer for. Get paid a million dollars to stay in a room alone for a year? Sure. Not cooking dinner and watching Netflix instead of working 40 hours sounds appealing on some basic level, no?

Except it isn’t a year of being healthy and getting a nice payoff. It is forever, it is expensive, it is isolating, and it’s all for the low, low price of your entire identity.

People also assume I must be deeply sad about this.

I’m not thrilled, obviously. I would give anything to teach my child to cook chicken or drive my kid to activities. I would give anything not to read obituaries of other patients with ME. I would give anything not to relate to mothers dying from slow, untreatable illnesses.

But I’ve reached a place of radical acceptance. Fragile, but familiar enough to be comfortable.

Things are good — by my metrics. To understand that, you have to imagine what it would take for you to live under house arrest for the rest of your life.

Here is what the last 500 days have looked like all day, every day:

In 2025, I drove an average of less than one mile per day. That allows basic preventive care, getting donuts for my kids a few times a year, and emergency hospital trips when needed. By pacing aggressively, I’ve maintained the ability to drive in a pinch.

• We cannot go on vacation.

• We cannot go to parks.

• We cannot go out to eat.

• We cannot attend events or extracurriculars.

But do you know how much joy we get out of getting donuts? It’s absurd how good it is.

I spend consistent, high-quality time with my children. It requires massive sacrifices from everyone involved, but it is an extraordinary experience for us. Sometimes I wonder if I am actually happier than my peers.

• I have creature comforts that reduce pain.

• I have caregivers who help with the house and kids.

• I have government benefits secured through a good lawyer.

• I have a supportive coparent.

• I have stable housing and long-term neighbors.

• I have affordable medications.

• I have a primary care doctor who advocates for me.

• I have a therapist who understands me.

I can still enjoy books, podcasts, and television at low volume. I can sometimes use the computer and write. Many severe ME patients cannot do even that—any sound or light is too much. Aggressive pacing is why I’m able to retain some of those skills. I’m rather proud of my ability to manage the factors I can control.

I am incredibly lucky to have enough stability to pace this carefully. That privilege is actively saving my life.

That is why I am not sad most of the time. I am grateful. I know where my limits are, and I can sometimes control how close I get to them. I know how much worse this could be.

But pacing is not a strategy for improvement. It is survival. I am tolerating torture very effectively.

ME has some of the lowest recorded quality-of-life scores in medical research. Making peace with that is complicated. But when your entire life becomes slow and intentional, quality time becomes everything.

There can be real joy there. I ran across an article yesterday by . They said, “If the energy budget allows for one excellent moment, it better bloody well be something memorable.” (The short piece is here, and you should absolutely go read it.) That is how we live our lives, too. Once or twice a year, we budget for a meticulously planned burst of joy, catered perfectly to what we need.

This mindset does not come naturally to most people. We saw a glimpse during COVID lockdowns — and even then, people still had far more freedom than patients with severe ME. And they acted as if their entire lives had ended because they simply couldn’t leave their home.

Their worst-case scenario is what defines my hope. During COVID, most people still had mobility, autonomy, and identity.

Now imagine losing fragments of those, one by one.

And this is where the fear enters — the part I cannot control.

A friend recently asked if my primary care doctor would advocate for me if things got worse. I hope so, but I wasn’t sure she wanted the honest answer to that question.

Here is the real answer to that question.

Savannah Yulia Victora-May, who has severe ME, is hospitalized in London right now. Reports state that medications allowing her to tolerate food, IV hydration, and pain control have been withdrawn. She’s struggling to accept donations for legal costs and 24/7 care because incoming cash over certain thresholds puts her disability benefits and healthcare at risk.

She wrote to her doctor that she is becoming “progressively thinner, weaker, flatter, and more cognitively impaired,” and asked a devastating question:

If a patient is denied food, water, and tolerable medication and dies as a result, who is responsible?

Savannah is asking people to contact hospital leadership. ME advocacy groups are mobilizing globally. It sounds dystopian. It is also not new.

• Maeve Boothby died under similar circumstances in 2021 after doctors refused total parenteral nutrition (food delivery via IV). The coroner ultimately ruled ME as her cause of death. Later reviews acknowledged she likely should have received life-sustaining care.

• Sophia Mirza died after being forcibly removed from her home and institutionalized psychiatrically. Postmortem analysis found severe spinal infection.

• Merryn Crofts died from starvation secondary to ME.

There are many more. A few years after Maeve died, a report was published and sent to six UK institutions for a response. Basically, they were saying, “A young woman died due to neglect on your watch. What do you have to say to that?” A response coordinated by the Minister of State for Public Health promised to make death from medical neglect of ME a ‘never event’. That report was made available in 2025.

Clearly, none of that is doing Savannah a bit of good, despite all that work being done specifically to protect people just like her in that situation.

The United States has no standard of care for ME. None.

Before Maeve’s inquest, investigators discovered the UK had no national policy or specialist treatment units for severe or very severe ME patients, either. They also found that there was minimal research, no treatment plan, and a lack of basic understanding for almost all professionals on how ME should be handled. And generally speaking, the UK is doing better than the US when it comes to ME care.

So it’s hardly a surprise I can’t find medical professionals who have heard of it.

Part of the issue is that the stigma is decades old and deeply rooted. A significant portion of medical professionals still believe ME is psychological — influenced heavily by the work of psychiatrist Simon Wessely, whose impact on global ME treatment is impossible to overstate. The CDC was also negligent in the early years of ME research, leading to decades of lost progress. (I’m reading a skinny little book about it now by Hillary Johnson called “The Why: The Historic ME/CFS Call To Arms.” Hillary might be the most experienced researcher in ME. She wrote the iconic “Osler’s Web” about ME before internet research was even a thing. Hats off to her.)

The result is patients being told to push through symptoms, exercise, or psychologically reframe illness that is fundamentally a physiological collapse.

Severe ME can progress to:

• Loss of light and sound tolerance

• Loss of ability to sit upright

• Inability to chew, swallow, or even digest food

• Loss of speech and mobility

• Hair loss, dental deterioration, and systemic neurological collapse

• An overwhelming sensation patients describe as “feeling like dying” or even burning while remaining conscious

Patients often die from secondary complications because they cannot tolerate routine medical interventions. The antidote becomes the poison.

When disease progresses, something terrifying happens: the sicker a patient becomes, the less able they are to advocate for themselves. And there are almost no specialists available--and most of them require in-person visits, a requirement so ironic that it’s hard to believe it’s true.

Savannah isn’t alone as she searches for doctors who can help her. Between her support system, lawyers, the ME community, and MEAction, and living in a country with a plan for ME, she HAS advocates. (More than the single primary care doctor I have.)

And still, this was her update:

This is a conversation I have already had with my own doctor, but we don’t really have a resolution. Currently, it’s so hard to find even simple treatments. I’ve been waiting nine months to find IV saline treatment at home due to staffing, availability, and complex inter-hospital logistics that no one can actually explain well enough for me to navigate them.

So yes, my life is stable. In many ways, it is good. I just renovated my bedroom so it better meets my needs. I can still write occasionally — maybe 5% of what I wish I could, but it is not zero. I’m able to parent my precious children with help. We are thriving and happy—even if this is nothing like the life I had planned for us.

But stability in ME exists alongside constant background fear.

Because when the illness worsens, the margin for survival disappears quickly.

And I’m not confident the medical profession will have my back if we get to that point. Will my primary care doctor advocate for me if things get worse? Probably. But the question really is—will that be enough?

I’ve been working on a secret project that I’m getting closer to sharing with you that aims to address this issue. If you would like to be notified when it’s ready for your eyes, please mash the subscribe button below. Mash it anyway, new subscribers (especially those from the ME community) make my day.

When ME does allow me to write, I’m putting it to important use right now. To help support this work, consider being a paid subscriber. Your funds help offset project costs and pay for food delivery, which frees up energy.

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I breezed through the 45-page document, so you don’t have to, and here are the highlights.

Backstory

A while back, I introduced you to ACIP (Advisory Committee on Immunization Practices). Created in 1964, it’s the committee full of independent experts that is the formal side of data-driven, government-supported, public health decision-making.

Last time we left off, I had updated the graphic to show that all of them had been fired by RFK Jr. very suddenly.

The News

These folks are at the center of the scathing decision issued Monday by Brian E. Murphy, United States District Court Judge in Massachusetts.

In it, the American Academy of Pediatrics and other doctor-ish agencies sought relief from Robert F. Kennedy Jr. and his folks for:

1. changing the CDC vaccine schedule recommendations (which affects insurance coverage, coverage in the federal vaccine injury compensation program, among other things)

2. bypassing ACIP while making those major changes

3. firing ACIP and replacing them with unqualified candidates

Though the whole case hasn’t played fully out yet, the judge made a temporary decision, and that is what “the news” is today:

ACIP has been “unfired,” and the vaccine schedule has been temporarily restored to its original state.

The Decision Itself

The ruling begins with some philosophical musings about science from Carl Sagan:

““Science,” like law, “is far from a perfect instrument of knowledge.” Carl Sagan, The Demon-Haunted World: Science as a Candle in the Dark 29 (1997). History is littered with once-universal truths that have since come under scrutiny. Nevertheless, science is still “the best we have.” Footnote: In this respect, as in many others, it’s like a democracy.” Sagan, supra, at 29-30.

Then it describes the “apparatus” the US has built from science plus procedure to eradicate disease. Much of that hinges on ACIP’s operation, they point out.

The lawsuit outlines three specific votes by the “new” ACIP that are problematic:

1. June Vote: discontinuation of thimerosal

2. September Vote: changing COVID vaccine recommendations

3. December Vote: recommending “individual-based decision-making” for hepatitis B vaccination—including the birth dose.

There is also a lot of discussion about the January 2026 memo that revised the childhood immunization schedule. (You may remember this because they dropped the schedule from 17 to 11 “routine” shots—leaving rotavirus, hep A, hep B, COVID, influenza, and (shockingly) meningococcal vaccines to “shared clinical decision making” process between doctors and families.)

The rest of the document gets into the arguments that the plaintiffs are making against RFK Jr. and Co. They are digging deep into US law, which is normally very mundane. The main law that governs all this stuff is called the APA or “Administrative Procedure Act.” It was created in 1946—probably to protect us from exactly this sort of nonsense. There is also the Federal Advisory Committee Act of 1972, which is literally federal advisory committee law—yawn.

Here’s an excerpt to give you an idea of how they leverage these documents to argue against what RFK Jr. has done INTO A BEAUTIFUL THING!

TL;DR

The Courts: The doctors are kinda right. This looks pretty sketchy, and we need to act now to reduce the risk of harm. We’ve listened to the crap you’ve both thrown at us, and for now, we think it’s best to stay (cancel) the new vaccine schedule, retroactively fire the new, unqualified ACIP appointments, and stay (cancel) all their votes until an official ruling.

We’ve reached the find out portion of FAFO. This story isn’t over, but what a big win for today!

P.S. I don’t have enough legal authority to know what happens to the old ACIP, but if you have the experience to know, please let me know.

I have been so active on Threads about the Paralympic Games that I was asked to write a whole post about it for the Empower Network—a nonprofit that provides professional opportunities for the chronically ill and disabled through networking, mentoring, webinars, and education.

Of course, I said yes. So if you are wondering why there are eleventy billion events, how classification works (including slightly disturbing diagrams), or what athletes to look for—I have you covered. You can see the post below.

The Empower Network Nonprofit’s Substack

The Paralympics: All Your Questions Answered

This article is a special feature for the Paralympics - tune in today to support the world’s elite adaptive athletes making history by pushing the limits of their disabilities and the sports themselves…

Read more

6 months ago · The Empower Network Nonprofit and Jess Badger

NBC has finally listed “Paralympic Games” in the sidebar, which makes them very easy to find.

According to the everyday viewer, wheelchair curling is both harder and more fun to watch than regular curling.

Yesterday, I turned on the downhill event for visually impaired athletes and was blown away. Not only do you get the athletes themselves skiing downhill at speeds that look criminally unsafe, but you get to see their guide ski ahead of them at EQUALLY FAST SPEEDS WHILE TURNING THEIR HEAD AROUND TO SHOUT DIRECTIONS AT THE SAME TIME. Incredible!

The Paralympic Games run from March 6-15, 2025 on Peacock.

My ears perked up a few weeks ago when I got a flood of text messages about a new study about chronic fatigue that came out of my alma mater, NC State.

My case of ME/CFS began exactly 20 years ago when I was a Park Scholar studying microbiology there. After winning the STEM-focused Goldwater Scholarship and conducting considerable undergraduate research, I went on to work at Labcorp and the North Carolina State Crime Lab before ME took my ability to work.

Since then, I have read so many research papers about ME/CFS that I consider myself an armchair expert, and more importantly, an expert at the patient experience.

Unfortunately, I’m really bummed out about this new paper from an ME/CFS perspective. Technically and scientifically, it appears sound. However, it’s a textbook example of the most common issue I see in chronic fatigue research.

Note: This post is less about critiquing this one paper and more about helping you interpret ME/CFS research in general.

In my opinion, there is just one question that separates all “good” research from all “bad” research about ME/CFS. But first:

Terminology Background

A quick note on terminology before we begin: ME/CFS continues to have a major nomenclature issue. Explaining it properly would require a 70-year history lesson about several key villains, a couple of government agencies, and learning about retracted paper with as much drama as Wakefield’s “vaccines cause autism” paper from 1998. (Vaccines don’t do that, but the fact that we have to keep saying that speaks to how bad science can singlehandedly shape policy for decades, even when it’s bullshit science.) This illness has a more complicated history than the French judges in ice dancing, and I can’t untangle that for us in a paragraph, nor will I try.

Classification and nomenclature are important in medicine because the more we can use one name for one illness or group of patients, the easier it is to treat them, keep track of the illness, and (sigh) bill insurance companies. Imagine if we offered the same treatments to everyone who has “cancer” without bothering to sort them into houses first?

For now, just know that most people use the following terms interchangeably to refer to the same illness, but they are not. Here is a very oversimplified primer on the terms used to describe ME/CFS.

1. chronic fatigue - Fatigue that occurs chronically rather than acutely.

2. chronic fatigue syndrome (CFS) - Most dominant name for the condition, which brings as much to the table descriptively as calling sepsis “blood not right syndrome.” It’s an umbrella term for many fatigue conditions, which differ in etiology. Fatigue is like cancer: one size does not fit all. ME is a defined condition within that umbrella, but it's usually lumped in with others. For what it’s worth, this is also happening with diagnostic coding.

3. myalgic encephalomyelitis (ME) - The “newer” name that more accurately describes the nature of the chronic, serious, neuroimmune disease, particularly when post-exertional malaise is present. It was technically the first term ever used in 1955—long story. ME has name recognition in the UK, but not in other areas of the world, where CFS still dominates.

4. systemic exertion intolerance disease (SEID), chronic fatigue immunity deficiency syndrome (CFIDS), or post-viral fatigue syndrome (PVFS) - Names you’ll see used to varying degrees that are all part of this disease family, but never won the naming contest.

5. long COVID - Often falls under the ME/CFS umbrella due to similarities in presentation, particularly the “happened after a viral infection” part. People with long COVID can meet ME criteria, but not all do. I’d guess that the Venn diagram of ME and long COVID is probably more a circle than not.

6. ME/CFS - A Frankensteinian mashup of ME and CFS that is ubiquitous but doesn’t really mean much. It’s also the most commonly used abbreviation for the illness.

I’m going to use ME to refer to the disease in this post. In my opinion, it’s the most well-defined term for this condition and the most correct.

The Big Question

There is one question to ask when looking at any ME-adjacent study: how did the study choose to select its research participants?

Let’s say you wanted to come up with selection criteria for a study on dwarfism. If you chose to select people who have a height below 4’10”, you would have a population that was comprised of people with dwarfism and children. Any conclusion you drew about dwarfism would be rendered almost useless because of the presence of children of normal height in your data.

It wouldn’t matter how good your study is--it’s of limited usefulness simply due to the way patients were selected.

Most ME studies have this flaw: they chose a collection of tired people or patients that fall into the CFS umbrella rather than taking the time to select people who have ME.

Admittedly, there are many criteria to choose from, and it’s been hard to define ME. Nevertheless, it has been attempted many times.

Here are the ones I can think of off the top of my head, along with the umbrella they fall under.

• ME (myalgic encephalomyelitis)

  • Ramsey (1986/1988) - first ME criteria, too simple, overly muscle-focused

  • London (1994/2014) - old, but more research-focused, far less comprehensive than ME-ICC

  • ME-ICC (2011) - best current ME criteria with high support in the community, especially for research

• CFS (chronic fatigue syndrome)

  • Holmes aka CDC (1988) - criteria that first defined the CFS name

  • Australian criteria aka Lloyd (1990) - too broad

  • Oxford (1991) - old

  • Fukuda (1994) - we hate this one, and it’s been very popular, historically

  • CCC (2003) - sort of a precursor to ME-ICC, but less good

  • Reeves (2005) - no one likes this, too much like depression criteria

• SEID (systemic exertion intolerance syndrome)

  • IOM/NAM (2015) - broader, clinically focused definition using the disease name SEID to replace ME/CFS; used by CDC

The criteria vary based on when they were established, whether post-exertional malaise is a required element, whether fatigue of a certain length is required, how many other symptoms are present, and what those are.

It’s certainly understandable that someone might not know how to untangle all of that. I practically have a degree in my own illness, and I find it a bit much myself. But it’s also reasonable to expect researchers to pay attention to this because research value plummets when this step is skipped.

Again, I’ll overuse this analogy: It would be like doing “groundbreaking” research on cancer without first deciding which of the four main types of leukemia you want to study. Or worse yet, grouping together those with rectal cancer and brain tumors into the same study.

NC State Study

The title of this study, “Babesia and Bartonella Species DNA in Blood and Enrichment Blood Cultures from People with Chronic Fatigue and Concurrent Neurological Symptoms,” suggests we are looking at people with chronic fatigue and other symptoms. It’s right in the name.

After reading the abstract, I scrolled down to the patient selection criteria:

• 1) Based upon study questionnaire responses, they had experienced fatigue or chronic fatigue for a duration of at least six months and

• 2) They had reported (questionnaire checklist) one or more neurological symptoms, specifically including the following: difficulty remembering, disorientation, irritability, rage, aggression, difficulty sleeping, seizures, tremors, headache, mental confusion, hallucinations, and anxiety/panic attacks.

I cannot think of a female friend of mine over 40 who hasn’t experienced fatigue for more than six months and anxiety or irritability. “Tired with other stuff going on” is how I would describe my entire social circle.

It’s certainly not specific enough to screen for ME, by any of its names, even the more umbrella-like CFS.

To be fair, the paper’s stated objective says nothing about ME or CFS. Its goal is “to determine how frequently Babesia and Bartonella are detected in research participants with a history of fatigue lasting at least six months.” Which it does. Scope matches selection criteria. Check.

It’s not the researcher’s fault that the headlines are pitching this like the newest breakthrough in ME or CFS research, either. But there is the rub—so many studies do exactly this.

I appreciate that they attempt to phrase the conclusions with precision: “This study provides documentation supporting a potential role for Babesia and Bartonella infection in patients with presentations consistent with ME/CFS.”

However, presentations consistent with ME/CFS and “has ME” are not the same thing. A hangover has presentations consistent with the flu, but they are in no way related—except maybe when you have both at the same time.

So, one has to ask: If their selection criteria actually selected patients with presentations “consistent with” ME/CFS and not the actual disorder, how applicable are their conclusions to ME?

The Diagnostic Criteria Landscape

In the paper, the author does say that “currently, there is no international consensus for diagnostic criteria for ME/CFS.”

Technically, he’s correct. Technically, it’s not codified somewhere. Technically, it’s debated regularly.

Technically, America doesn’t have a favorite soda either—but everyone knows it’s Coke over Pepsi. Something can be debated and also “generally agreed upon.” Case in point: Trump’s connection to pedophile rings is hotly debated, and I think we can all agree that he is, in fact, a pedophile.

It’s not like we haven’t gotten anywhere in properly identifying ME patients. There are obviously bad criteria and obviously better ones. Sure, it’s a messy history intertwined with the female hysteria narrative, but there are consensus criteria that an international panel of experts agreed upon for over 15 years.

The ME-ICC (Myagic Encephalomyelitis-International Consensus Criteria) were specifically created for research to address the dilution and inconsistency in research created by ME/CFS and its hybrid names. They were developed in 2011 by a committee of people from over 13 countries with 500 years of collective clinical experience, including experience writing criteria. Since then, the paper has received support from most of the ME community and has been cited 921 times. (In science, that’s considered a top-tier, well-known paper.)

ME-ICC includes some important improvements on past models:

• requires post-exertional malaise as a symptom

• removes the requirement to wait 6 months for diagnosis

• is evidence-based

• specifically aims to clarify a consistent way of classifying a homogenous group of patients in the CFS umbrella, so that those with the distinctive disease can benefit from biomarker and treatment research

• discusses symptom severity, particularly those with severe or very severe presentations (only about 1 in 5 ME studies do this, which is a big issue)

• discusses how presentation may differ in pediatric populations

There are valid criticisms about ME-ICC, primarily that it identifies a more severely impaired group, on average, than previous criteria. (This is not necessarily a bad thing because the most severe types of ME are underrecognized.)

Many papers have been written about ME-ICC and how it fits into the overall picture of ME, including this one, this one, this one, and this one.

Back to NC State

I’m surprised a study that is trying to further understand ME/CFS isn’t at least checking in with which of these might apply to their study—even if they don’t use ME-ICC specifically.

No criteria are mentioned at all, and the closest approximation would be Oxford, which is extremely dated and not considered robust enough for modern ME research.

There could be good reasons for this. For example, patients were selected from an existing research database, so they may not have been screened for something like PEM. (I would argue that selecting patients another way might have been a better choice.)

It’s also possible that this was an early “proof of concept” type study that lays the groundwork for future research. Perhaps this study can be used to secure future funding by providing, “There is more to uncover about fatigue and Bartonella, please fund it.” The author hints at this in the discussion: “Future case–control, multicenter studies are needed to determine whether Babesia and Bartonella species cause or are cofactors in patients diagnosed with ME/CFS.”

Nevertheless, one of the papers he cites in his work warns how varying diagnostic criteria lead to inconsistency within patient groups. I wish he had explained his choices more, rather than simply stating that there were no international consensus criteria to work with.

I have to wonder: did he consult the ME community about patient selection? How did he make those choices? Would it have been significantly more expensive to alter patient selection? Are there plans to handle that differently in the future, for example, in those future studies?

Regardless, I am grateful to see more research about vector-transmitted pathogens. It is much needed.

The Impact on Research

The issue with selection criteria is hardly unique to this one paper, but that’s why ME research feels so diluted these days. Behind every big headline that allows the layperson to conclude there is progress is a paper that doesn’t really apply to ME at all.

When I sent this NC State paper to an ME science friend, her response was the same as mine: “having fatigue for 6 months with some neurological symptoms shouldn’t really be labelled as someone with ME/CFS…no matter which criteria we use.”

Bingo.

So that’s my verdict on this new paper: It has some value in exploring vector-transmitted pathogens, which is much needed. But it leaves much to be desired in advancing our understanding of ME.

Same story with so many of the headlines you see about “chronic fatigue” and all its names in the media.

Let me know if you have any questions in the comments.

Additional Sources

Carruthers, Bruce, and Marjorie van de Sande, editors. International Consensus Primer for Medical Practitioners. Carruthers and van de Sande, 2012. https://drive.google.com/file/d/1o3Gw9FG8L0tyihAVEfgIhUOHN0lBP5m0.

Carruthers, B. M., et al. “Myalgic Encephalomyelitis: International Consensus Criteria.” Journal of Internal Medicine, vol. 270, no. 4, 2011, pp. 327–338. https://doi.org/10.1111/j.1365-2796.2011.02428.x.

Jason, Leonard A., et al. “Can a Consensus Occur on a Research Case Definition for ME/CFS?” Fatigue: Biomedicine, Health & Behavior, vol. 12, no. 2, 2024, pp. 135–141. https://doi.org/10.1080/21641846.2024.2314409.

Lim, Eun-Jin, and Chang-Gue Son. “Review of Case Definitions for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).” Journal of Translational Medicine, vol. 18, 2020, p. 289. https://doi.org/10.1186/s12967-020-02455-0.

Todhunter-Brown, A., et al. Recent Research in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: An Evidence Map. National Institute for Health and Care Research, 26 Mar. 2025. https://doi.org/10.3310/BTBD8846.

Twisk, F. N. M. “ME (Ramsay) and ME-International Case Criteria (ME-ICC): Two Distinct Clinical Entities.” Journal of Translational Medicine, vol. 18, 2020, p. 447. https://doi.org/10.1186/s12967-020-02617-0.

I understand that you are the primary investigator of a newly registered study investigating the effects of various forms of exercise on people with ME/CFS.

I am formally asking you to pause recruitment for your study, “Investigating the effect of swimming on autonomic and symptomatic responses in individuals with myalgic encephalomyelitis/chronic fatigue syndrome,” until the study design’s flaws are fully addressed.

I have no authority whatsoever to ask this, but as someone with severe myalgic encephalomyelitis (ME), extensive experience in reading ME research for 20 years, and a (very former but award-winning) background in university research, I’m asking anyway.

Your study recruitment poster made the rounds in private ME groups on social media. The response from patients was swift and strong—not in a good way.

I am urging you to listen to those of us in the ME community who have been asking you to reconsider your study because it is very likely to cause harm to the patients you are trying to help.

I hope you’ll receive it within the spirit it’s being given—to work together to improve outcomes for ME patients.

Concern #1 - Study Design & Safety Issues

MISSING PROPER PATIENT SELECTION CRITERIA

Which patient criteria do you plan to use for patient selection? Do you plan to use ME or CFS criteria, and if so, which one? If you want to study a homogenous population, might I suggest ME-ICC, a modern international consensus criterion for ME that’s well-suited for research?

I noticed that you are recruiting people with CFS along with patients who have fibromyalgia, POTS, mast cell activation syndrome, long COVID, post-viral fatigue syndrome, and overtraining syndrome. That is a wide range of conditions that are not CFS, ME, or ME/CFS, by any name.

You may be confusing these “similar” conditions with comorbidities. When comorbidities co-occur, they remain separate diagnoses with distinct symptom requirements—they are not interchangeable.

PEM IS NECESSARY FOR ME DIAGNOSIS

Then you say that all participants should experience some degree of post-exertional malaise (PEM).

The hallmark symptom of ME is PEM. PEM is what makes ME patients distinct from other groups. This symptom is very similar to post-exertional neuroimmune exhaustion (PENE), which is used in some criteria instead.

There are no reliable tests (yet) to confirm the presence of ME, but a two-day cardiopulmonary exercise test (CPET) is close because it points to PEM. CPET tests show that ME patients exhibit unusual physiological responses during exercise that cannot be explained by a lack of conditioning. The cumulative effects cause their performance to plummet the following day.

If post-exertional malaise is necessary for an ME diagnosis, then it’s concerning that the study involves asking those same patients to exert themselves at all.

OVEREXERTION MAKES ME WORSE

You are attempting to study exercise in a group of patients who are suffering from the burden of everyday overexertion. Trying to see if exercise will help them means intentionally pushing them into danger zones to study what happens.

Studying exercise at all in an exercise-intolerant population puts them at great risk of permanent harm. Your study aims to have ME patients engage in both walking and swimming to compare them. Your hypothesis is that walking will reduce physiological stability, while swimming will improve it.

In your OSF study listing, you cite a source that says, “…despite the known benefits of exercise for improving function in most disease states…exercising with ME/CFS is generally contraindicated to avoid a worsening of the condition.”

Your hypothesis itself is a safety issue, and your citations support that.

Why, of all the things to study, would you study exercises as a treatment for ME when such a gargantuan volume of research outlines its harms?

• The primary finding of this meta-analysis is that a single exercise session led to greater increases in fatigue among people with ME/CFS/SEID than among control groups.

• Observed declines in post-exertional energy metabolism—what you are predicting will happen—translate notably to a worsening of impairment status.

• This is an example of a study that aims to understand exercise physiology in people who experience PEM. Its scientific rigor is an order of magnitude above your design study. Granted, this study examined “maximal” exercise in patients with mild and moderate disease, not “mild” exercise, but “it should be noted that the patients experienced considerable symptom exacerbation after the tests, often lasting for weeks.” Because I’m concerned that your study is closer to maximal exercise than you realize, this is a big concern.

• Recovery rates of people with ME are low, often cited as 10-15%, if not lower.

• The primary modern treatment for preventing ME from worsening is pacing—in other words, not overexerting.

You hope that “the results may support future exercise recommendations for the CFS community.” That is concerning.

EVEN MILD ME PATIENTS ARE SIGNIFICANTLY DISABLED

You may think that studying exercise in a mild to moderate group is safe if patients believe they can tolerate that level of exercise. I disagree. How do you know any exercise is safe for this group of patients, given that they are all exercise-intolerant to some degree? Just because you suspect that swimming may be less harmful doesn’t mean it will be safe for any person with PEM and ME.

Mild patients typically have a 50% reduction in activities. This typically means they only work part-time and have dialed back leisure activities. Everyone in this group is pacing, a proven way to manage energy and avoid overexertion.

Most moderate patients have stopped working entirely and dramatically reduced their other commitments, like hobbies or travel. Outings become less frequent and of shorter duration. Some patients are largely homebound.

Even mild to moderate patients are extremely impaired at baseline, nevermind after 15 minutes of exertion.

FUNCAP SCORING CONCERNS

You say you will accept patients whose FUNCAP27 scores are greater than or equal to 3.0 less than 5.8). What you need to know is that FUNCAP27 is designed to capture the full range of disability from normal ranges to humans who cannot tolerate light, sound, talking, or eating.

Although you cite the same paper, I’m not sure you fully understand its conclusions. Here is a chart from that paper showing which number ranges correspond to each severity level.

Mild has an average of roughly 4.0, and moderate has an average of 3.0-3.5. Anything below about 5.8 is outside the “healthy controls” range. (Tuck this away for the moment: the two consistently lowest-scoring categories are “activities inside the home” and “activities outside the home”. The highest are “personal hygiene” and “being upright.”)

Here is what those numbers mean:

Here are the tasks that people rate when completing the FUNCAP27:

If you want to take it for yourself, you can do so here.

That FUNCAP range is a very affected group. Even if the patients who consent to the study are in the higher end of that, for most people with PEM, driving to the gym to do some light swimming and then showering the same day isn’t “light” exercise; it’s maximal exercise.

Let’s take someone with a score of 5. To get this score, for every 6 they have, they also have a 4. In other words, for every “this does not affect other activities” thing, they have a “must limit other activities on the same day.” The things they are limiting are exercise, both activities inside and outside the home (as the chart shows).

Concern #2 - Exercise is Contraindicated in ME

THE POISON CANNOT BE THE ANTIDOTE

In your proposal, you state that PEM limits someone’s ability to be active, which reduces their quality of life. It’s a side effect of what appears to be the ONLY condition where physiological exertion is contraindicated.

That doesn’t mean you need to fix it with…exercise? There is a reason we don’t tolerate exercise—it’s physiological in nature. The poison cannot be the antidote—even if exercise is beneficial to most other people.

I expect peanut allergy sufferers would have a better quality of life with Reese’s peanut butter pumpkins, but it would be silly to design a study to determine which peanut butter product would be “better” for them. It’s just not a relevant question.

Concern #3 - Fundamental Scientific/Ethical Problems

MISSING ME RESEARCH

Which ME experts, specifically, did you consult before designing this study? Which papers about exercise intolerance did you read before deciding that you could do this study safely and ethically? Has an ethical board approved this study?

QUESTIONABLE CITATIONS

You cited a paper in your OSF study titled “cardiac remodeling” in elite aquatic athletes. How on earth could that possibly be relevant to the sickest patients with the worst quality of life in the chronic illness community—those with ME?

You also cite a paper titled, “A perspective on high-intensity interval training for performance and health.” Again, how would that be relevant in studying a group of people for whom exercise is contraindicated?

MISSING ME HISTORY

Are you familiar with the PACE trial study (short for "Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation")? Anyone who wants to attempt to study exercise in an ME patient population must understand the PACE trials forwards, backwards, flip it, and reverse it, or whatever Missy Elliott said.

The PACE trials studied exercise in patients with ME and concluded that it was beneficial (along with cognitive behavioral therapy). Patients campaigned for a full release of the data. After a five-year battle, the data was released and then analyzed by experts. More than 40 scientists wrote to The Lancet, demanding that the paper be retracted, which it was.

Unfortunately, the damage was done. The PACE trials shaped ME public health policy to this day, codifying exercise and mental health therapy as “proper treatment” for an illness with a shockingly low quality of life.

David Tuller, a public health writer from CA, has spent much of his career writing about the PACE trials. His extensive history is available here: Part I, Part 2, and Part 3.

POWER DYNAMIC & TRUST

When you do a study of this nature, patients trust that you have their best interests at heart. Even if you say “While we intend to only involve participants to whom this will not cause severe worsening of the ME/CFS, we cannot guarantee it. As such, if this is not the right study for you, please do not participate.”

This study is not appropriate for anyone with PEM. Participants assume you are experts and wouldn’t recommend this study if it were very likely to harm. Unfortunately, it is.

Concern #4 - Measurement & Methodology

VISIBLE IS NOT AN APPROPRIATE RESEARCH TOOL

Visible is a company that provides software that helps people with energy-limiting disabilities better pace their energy using a wearable heart rate monitor and proprietary software.

Do you understand what the Visible data output is and what it actually conveys physiologically? Are you educated about their proprietary formula and what exactly a “morning stability score of 4 or 5” means?

Your study plan indicates that subjects will download Visible on day 1. Did you know that the software requires a minimum of four days to calibrate—ideally longer to learn someone’s patterns.

Does your study plan account for that?

HEART RATE VARIABILITY

Heart rate variability (HRV) is insufficient to determine whether exercise is safe in ME populations.

RECOVERY WINDOW IS TOO SHORT

You also mention that you will provide patients with a 72-hour recovery window. Are you aware that PEM can sometimes take up to 7 days to appear? You cannot ensure patients are safe from PEM before they exert again unless the recovery window is much longer. PEM can last from a few hours to days, to weeks, or even months.

LONG-TERM FOLLOW-UP

Are you planning to follow patients to assess longer-term outcomes and confirm that the study did not cause relapse?

Somewhere in there, I suppose you could thread a microscopic needle where studying exercise in ME patents makes sense, but that would require a study with the most ironclad ethical standards.

I urge you to spend more time understanding the history of exercise recommendations for ME patients, consulting with ME research experts, and pause to consider whether this study truly stands to benefit ME patients.

Sincerely,

Jess Badger

I’ve seen Nipah virus pop up in the news, along with some pretty scary headlines. I’ll be perfectly honest with you, I had not actually heard of Nipah virus before last week. I have learned enough to write an entire biography about it, but in this post, I’ll focus on what you need to know.

You don’t need to worry about the Nipah virus. Put another way: you need to worry about it as much as you might already worry about a clown on roller skates microwaving a hot pocket in your kitchen a 3 am—not at all. It’s a thing that theoretically could happen in real life, but it’s just not high on the list of real worries.

1. Nipah isn’t really a happy human virus. Nipah likes animals, especially bats that live at very specific latitudes and climates.

2. Nipah is not super contagious. Measles is like glitter—you can’t not pick it up if it’s nearby. Nipah needs some serious work to be transmitted and generally infects fewer than one person per infection.

3. Nipah virus is fairly lethal, however—stay with me here—that fact makes it less likely to spread. Dead people don’t good hosts make.

4. There are various early trials in the works, which would mean a vaccine could be fast-tracked—theoretically at least.

5. The current outbreak is very small and under control. The NEWS CYCLE is panicking, but local health folks aren’t.

Now, don’t get me wrong, it’s not lost on me that the US is no longer a part of the World Health Organization, as of last month. That concerns me too.

But it's worth pointing out that the other countries that make up the WHO are managing this risk, and it’s a low risk to begin with.

Pandemics are kinda like good, healthy relationships—a lot of individual ingredients need to be present for it to work. You can’t simply take any ol’ virus and pretend it will behave like COVID to scare people on the internet.

Let me know if you have any specific questions in the comments.

Hi dear reader,

The friendly neighborhood microbiologist is taking some time off. Let me introduce myself: I’m a friendly sentient flu vaccine.

A few days ago, Bobby McBrainworm stripped the US vaccine schedule without providing even a shred of evidence to support the change, and my vaccine friends didn’t handle it well.

Not-A-Doctor Kennedy says this will help increase vaccine rates, which is like a waitress saying “Don’t order the steak” and being dumbfounded when the whole table orders the chicken.

Here’s what was changed, courtesy of The New York Times:

Mr. HPV left work early, screaming as he left, “What a dusty lampshade he is!” I just made cervical cancer rates plummet!”

Mrs. Rotavirus told me to tell you to pass along the word: rotavirus poop has a very distinct smell, and she suggests we add that fact to the vault of common knowledge again. She’s not even technically a vaccine!

Mr. Heptatis B is staring into the ceiling fan, muttering to himself, “But reducing something by 95% is a good thing, right? RIGHT?” He appears to be questioning all his life choices and just lit his sixth cigarette.

Mr. RSV is taking the news best so far, probably because he’s just newer to the vaccine scene. He commiserated with me earlier about being axed in the middle of respiratory virus season.

Mrs. MMR hasn’t stopped shaking her head since the announcement because she was so sure that she was on the chopping block after the whole autism scandal situation. She’s literally been sitting there shaking her head for the last 39 hours, and we are beginning to worry.

Mrs. Meningitis just sobbed in the corner, “Even me? They broke up with me?” She’s probably the best in the class and least prepared for this fate, so I really feel for her.

I haven’t found a reputable medical professional online who supports the vaccine schedule change, which is tentatively reassuring, but we are still devastated over here.

While I have you, and because I never get to do this, may I air a grievance? I just want to clear the air. Especially right now.

Whoever they hired for my PR has been doing their best, but every year, without fail, I hear people complain, “I got my flu shot, but I still got the flu.”

I get it, I really do. You stop everything else in your life—drive to the pharmacy, wait in line, let someone jab you, deal with several days of feeling shitty, and then get the flu anyway? No wonder people don’t swipe right like they used to.

But friends, listen up!

YOU GET ME—THE FLU SHOT—TO REDUCE THE COMPLICATIONS OF THE FLU. Sometimes, I can put you directly on the “no flu” list. But that is not my actual job description. It’s just a free bonus I offer at no extra cost because I’m a decent guy.

My real job is making sure you don’t end up with organ failure, sepsis, or death. No one plans to have these things happen, of course, but it’s a bitter pill to swallow when they later realize those complications were probably avoidable.

I’ll make you a deal. Even if I can’t get you a guaranteed spot on the coveted “no flu” list, I’ll enter your name in a “no flu” lottery of sorts. This is an entirely made-up lottery, but it’s an analogy for whatever it is I actually do when your mitochondria, endoplasmic reticulum, or whatever you learned in biology, do their little dance with me in the organism that is you.

Get your flu shot! Play my totally fake lottery!

They don’t pay me enough to keep you flu-free this year, but I’ll do my best. My track record on preventing complications is the envy of every biotech startup in Palo Alto. Get in on that!

Same with all my vaccine friends. On behalf of all of us, I’m sending a hearty “fuck you” to Secretary Dummy McDumbface.

Thank you for your attention to this matter,

The Friendly Sentient Flu Vaccine

I have missed you. While many of you are good friends and family, I don’t know most of you personally. But I think of all of you on your phones or computers, inundated with notifications of new content ready for your consumption. I’m eager to be there, but my health just hasn’t allowed it.

In October, I marked a year of being bedbound. I’m in awe of how little energy I have for anything, including writing. Granted, I have severe ME, so my life as a disabled person looks different than most. But how do I have time for nothing when all I’m doing is nothing? It just feels like my poor cells just don’t make enough energy for anything except existing.

I wanted to update you on the status of my current healthcare team so you can get an idea of what current ME care in the US looks like. I cannot stress this enough: there aren’t many of us healthy enough to truly convey what this experience is like. It feels so cliche to scream into the void, “I WANT TO SHARE MY STORY SO IT CAN HELP PEOPLE.” But yeah, basically that.

I have wanted to brainstorm with you all about how I might get around these cement barriers to getting good care. It’s hard to believe how few options I have. Is it possible for someone here to know someone who knows someone? It’s probably the best next option, since living in one of the best places in the country for medical care (central NC) hasn’t really panned out.

I have wanted to write about current events, public health, and gay stuff. I have REALLY wanted to write about how much I love curling.

But those things can all wait because they must. But when that writing faucet turns back on? I won’t be able to shut up. Truthfully, I long to inundate you with posts because it will feel like my voice is back.

I've been spending time lately making art, which is a nice way to keep my brain active without frying any of its circuitry. (Even mental stimulation can worsen post-exertional malaise.)

As we look forward to 2026, I know we are clinging to what is left of our collective morale. I remind myself that good things will continue to happen:

• excellent TV shows will still come out,

• the sun will still be beautiful when it rises and sets,

• people will sing or dance on stage,

• some kid will get picked to be team captain,

• babies will be born,

• communities will gather,

• our phones will keep making that 6-digit security code pop up automatically so we don’t have to copy and paste it

• someone will tell us some really juicy gossip,

• a favorite actor will make a new movie,

• the Olympics and Paralympics will happen soon,

• strawberries will grow in the spring,

• we’ll delay a task for so long that it resolves itself

• someone will get a better job

Good things will keep happening.

Happy holidays to you. Thanks for being here, and I hope to see you soon.

Last week, I had so many issues getting a refill of the muscle relaxers I take daily that I was concerned my primary care provider had been taken over by a handful of raccoons wearing medical coats. On Friday, it finally got called in, but as predicted, something else was wrong this time: wrong dosage and at the wrong pharmacy.

I went to bed last Saturday and only took a half-dose to stretch out my supply. This also served as an annual reminder that I shouldn’t do that ever again. My entire body ached in strange places, like the connective tissue above my knees. It was such a surreal experience that I didn’t really notice that my upper abdomen was trying to send me a message that something was wrong. (This is the foreshadowing part of the story.)

I woke up the next morning in pain, but not ER-level pain. I was very close to going back to bed, but something told me to go in and take my chances of a Monday morning ER visit.

I need to pause for a minute because the gravity of this decision cannot be overstated. Seeking medical care puts me at high risk of a serious crash, which can sometimes be permanent. Once you enter the doors of an emergency room, the currency of chronic illness is not anything that can be spent. I’m at the mercy of whether explaining my needs while grimacing through pain is convincing to the individual in front of me—someone who probably hasn’t heard of my illness and isn’t inclined to get a lesson from a patient writhing around on a gurney. Your credibility really slides when actively vomiting while your underpants are showing, you know?

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There is no guarantee that things I advocate for or things that will be granted, regardless of how helpful they might be. Walking into an emergency room is terrifying because the difference between a good experience and one that can cause worsening of my health is simply luck.

The nearly empty waiting room was so bright that I immediately burst into tears as soon as they told me to settle in. I had hoped my hoodie would provide enough protection from the light, but I was very, very wrong. An employee took pity on my tears. The first miracle of miracles occurred: I was told that room nine was already ready for me.

In preparation for my trip over, I took two Ativan as they help protect against post-exertional malaise. I got saline and morphine fairly quickly, but the pain was increasing faster than they could give me antidotes. I was moving so much around on the bed that my pants were quite literally sliding down my hips.

The good news is that they quickly identified my gallbladder as the culprit, and within about 5 hours, I was on the operating table having it removed. Two stones blocked the bile duct, and it was in the early stages of inflammation and infection.

The last thing I really remember before anesthesia is being asked, “When was the last time you took <insert medication I have never heard of or have taken since 2008>?” They listed so many drugs that I was simply exhaling the word “no” instead of breathing at some point.

By this time, I’ve been pumped up with so much pain medication that while I could legally consent to surgery, I wasn’t much use for anything else. When I opened my phone for the first time post-surgery, staring right at me was my current medication list, something I had dug up for them, but they never asked to see before surgery. That’s probably not great, and it proved to be a real problem when I asked for my nightly medication— they had none of them on record. I had my pill case with me, but I was forbidden from taking my own medication, too.

My mom just happened to be in town, so she was with me for most of the day. After surgery, she brought me the best hamburger I’ve ever eaten. I’m pretty sure I said that after she gave me a burger after my first child was born, too. Something about that post-surgery hamburger that really exceeds all reasonable expectations: she also successfully retrieved my wheelchair from its hospital babysitter, the security guard.

After a pleasant overnight stay in an isolation unit with a special double door, I was discharged the next day. The star of the show that day was a woman named Torrey, who did something that I thought was discharge instructions, and then something later that actually was discharge instructions.

I commented on the fact that she had a job where she could wear a Duke t-shirt. She agreed and said that next year they’re planning to change that rule. I told her that they should put patients first and that this patient wholeheartedly agrees that she should be able to wear that Duke t-shirt as a work uniform. I really am a delightful patient when I’m not in pain.

I cannot express enough how fantastic Torrie was. At the end of our second call, I told her what a great experience it was and how each positive experience is a tiny bit healing after years of medical bullshit. I suppose I could blame getting sappy on the meds, but I feel like people need to hear when they do a good job, and we don’t say that stuff nearly enough.

The nursing staff and the surgical team were also incredible. Nearly every intervention I asked for was granted, including an extra bag of saline before I left. They were comfortable, measuring my progress as a percentage of my normal and not their one-size-fits-all post-surgery benchmarks. I’m home, and the incisions are small and look like they are healing. I’m surprised at how little pain I’m in overall, considering they removed a whole organ.

I’m also amazed at how much my everyday life looks identical to recovering from surgery. I know it on a cognitive level, but it was jarring coming home and seeing it happen in real life. Like, oh snap, this really is what I do all day. I recover from imaginary surgery I never had: all day, every day. So, weirdly, it’s a bit of a novelty to look down and see the incisions this time.

When I got home from the hospital, my muscle relaxers were sitting there on the front porch, hand-delivered by the mom and pop pharmacy. One less thing I needed to worry about.

I sent my friend over to the pharmacy to pick up my post-surgical medications. It was the standard issue package: a couple narcotics, zofran, and Tylenol/ibuprofen. The surgical team prescribed a different muscle relaxer, which is great for pain, especially the pain associated with one’s abdomen being inflated with carbon dioxide--plus they decrease the need for opioids. Muscle spasms tend to be my most serious surgical complication, so I was excited about trying this medication because I was having pretty intense referred pain in my shoulders.

The surgeon called in the new muscle relaxer incorrectly, a dosage that doesn’t exist. You know, when you call a doctor’s office and enter the phone tree, you end up having to choose between office info, scheduling, nurse line, and “if you are a doctor or hospital, press x?” I called the phone number on my discharge papers and was bold and pressed that number.

“I MYSELF AM A HOSPITAL TODAY, FOLKS!” I figured that was my best shot of talking to a human on the phone who could get this correction taken care of. She said she would get right on it. She did not. I tried the on-call surgeon, and despite a promise to call back, neither did they.

I guess I’ll just try my regular muscle relaxers.

At least the messages from family have been hilarious.

Thanks for your patience as I take a half-hiatus from writing. Looking forward to feeling better more than you know.

My health has been “uncooperative” this summer. The upswing I have been hoping for feels like a tetherball that has swung wildly and smacked me straight in the nose. While I would love to offer a positive spin on that, I don’t have much to offer in that department. I am committed to taking care of myself first, my kids second, and everything else after that. So if my body isn’t up for writing—I don’t force it and trust that my audience supports that choice.

Instead of writing, I am forced to spend a lot of time thinking about writing, which is not the same thing at all. There are millions of books that have been written in heads, and not a single one has ever been read. Le sigh.

I have thought to myself lately: if I don’t have the energy to write, does that mean this disease is taking my ability to write? That’s what everything is these days: I technically “can” do it, but under such specific circumstances that it just doesn’t count as “can” anymore. Can I go places? Yes, but only on rainy Tuesdays during election season, accompanied by an actual clown using directions written in a Ticonderoga #2 pencil featuring the perfect penmanship of a first-year kindergarten teacher. It COULD happen, but it’s not going to. And even if it does, I’ll need several business days to make it happen. (You know, to find the clown.)

Functionally, there is less and less I can do. And most of the time, that means that writing must wait. Sometimes it feels like the internet is more likely to agree on something than I will get a solid hour or two of writing time.

Occasionally, I’m able to write for a while. People like to call those “good days,” but that’s not how it feels. The days are all exactly the same to me. It’s just sometimes the stars align in a special way. I can’t control it, so instead of trying to engineer it or optimize, I just trust my body to tell me when it can manage and when it needs rest.

I do want to share more about the medical aspects of this illness as I am able because 1) it’s actually fairly interesting and 2) people as sick as I am are not writing about it, and people deserve to know what this is like.

That said, I wrote a brief update tonight on public health news, so here is tonight’s post:

The press conference about autism and Tylenol was unhinged.

I don’t even know where to begin, so I’ll keep it short. Acetaminophen (brand name Tylenol in the US) does not cause autism. There is a poor-quality study that suggests a slight correlation, but CORRELATION IS NOT CAUSATION.

I perused one of the two studies the FDA referenced in a press release. The first didn’t even compare maternal Tylenol use to autism prevalence in children—it looked at ADHD. The second study has some glaring errors. The biggest issue is that it’s an observational study that didn’t account for “unmeasured genetic and environmental factors.” A simple explanation for the results of this study could be: Pain disorders affect those with autism more often than those without. People with autism are more likely to have children with autism because it’s roughly 80%+ genetic. People with pain disorders take pain relievers more often than those who don’t. It’s a perfectly reasonable hypothesis (backed by scientific evidence) that has nothing to do with Tylenol actually CAUSING any autism at all.

This is the most scientific error, folks!

Trump went on a rant about how we shouldn’t be giving hepatitis B vaccines to newborn babies any longer. He would like to wait until babies are older and more likely to be sexually active (which he defined as 12 because of course he did). However, hepatitis B isn’t caused by just sexual transmission or IV needle use—it’s also caused by maternal transmission. Unlike adults, babies infected with hepatitis B are extremely likely to end up with full-blown liver disease or liver cancer as adults.

Newborn babies don’t get many vaccines, actually: many are given over the course of the first year, as their immune systems mature. A HepB newborn vaccine is 1) safe and 2) prevents infection even if the mother is HepB positive.

It’s an enormous victory for public health to have eliminated most maternal transmission in this very high-risk infant population.

If we cannot trust the administration with VERY BASIC vaccine information like this, why should we trust them with the ability to recommend what is best for our precious children?

HepB is a dumb way for children to die in 2025.

This administration is not scientifically literate. So it’s not a surprise that they are using flimsy science to blame autism on Tylenol.

I cannot stress this enough: talk to your own doctor. Not Trump, not RFK Jr., not Dr. Oz. Not even little ol’ me.

Talk to your DOCTOR. About vaccines, autism, Tylenol, pregnancy, and everything else.

Can we get the Ethics Committee to look into Dr. Oz?

Dr. Mehmet Oz was confirmed on April 3, 2025 and he committed to divesting his United Health Care and iHerb stock within 90 days (July 2, 2025). (iHerb is an online supplement/wellness company.) The details of the ethics letter he signed are ambiguous enough that he may be able to hang on to some of the money, but he did commit to selling off most of it. We’re talking millions of dollars, possibly tens of millions.

A while back, a watchdog group asked the FTC to investigate Dr. Oz for violating influencer marketing standards for his posts about iHerb. He also had financial ties to hydroxychloroquine back when he promoted it for COVID.

So it’s so INTERESTING that I can find zero confirmation that he actually divested from iHerb or UHC.

Yesterday, Dr. Oz and his dumb face endorsed folinic acid (aka leucovorin) as a ”treatment” for autism. Not surprisingly, this is also based on flimsy evidence. Folinic acid is a special type of B vitamin that helps children with a specific deficiency, which is a relatively rare condition affecting a small percentage of people with autism. So it’s just a strange choice to make sure everyone on Medicaid has access to that particular vitamin supplement under the guise of autism treatment.

When I searched for leucovorin, iHerb is not on the first page. But when I search how to buy “folinic acid”, iHerb is the second hit.

How interesting. If he hasn’t divested, that would be a clear ethical violation because he stands to profit from it. So it’s pretty important that we know either way.

He also promised to divest from UHC, which is very relevant since he is running the Center for Medicare and Medicaid Services. Medicare loves to push Medicare Advantage (Part C) plans, which means they contract out with consumer insurance plans, including UHC. It’s a clear conflict of interest.

The Ethics Committee should look into it because this isn’t an ethical gray area. Just to make sure. Maybe he divested, and all is well. But we can’t give him the benefit of the doubt with his record.

Medicare is going to pull telehealth coverage on September 30.

In March, I wrote about how telehealth coverage for medicare patients was set to expire unless Congress intervened. At the 11th hour, Congress passed a bill and Trump signed it into law, extending telehealth benefits to September 30, 2025. That’s quickly approaching.

So, if anyone is thriving in the current climate and has the energy to lobby on behalf of people like me in their free time, feel free to start there. The disabled and elderly are famously “people who don’t get around great,” and they need access to doctors who can see them while their ass is firmly planted on their own couch. This isn’t that hard to understand.

I wrote this piece in March about it, feel free to review. It’s the same story, just a different day.

I spoke with my doctor about this, and we have no idea what we will do if this happens. Either way, we are trying to push for home health services to take me as a patient for some aspects of my healthcare. I think we may have finally figured it out, but I’ve said that no less than five times over the last few months so I’ll believe it when I get the call back.

In the meantime, a local mobile nurse called me back this week, and I asked if they did house calls for COVID and flu shots. Her response left me speechless: “I thought those things didn’t work; are people actually still getting them?”

So that’s…great.

I hope to be here more often in the coming months, but I cannot control how my body responds to this illness, and I am at its mercy.

I hope I’ll see you back here soon! I miss you guys bunches and bunches.

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1. Become disabled.

2. Figure out if your diagnosis qualifies.

3. Figure out how many “work credits” you have, a thing that no one knows, and read enough of the internet to figure out if you need to apply for SSDI (work history based) or SSI (income based)—two very different programs with similar names.

4. If you decide you need to apply for SSI and you are married, consider divorcing your spouse to avoid the marriage penalty.

5. Apply. Provide detailed information about your demographics, marriage history, children, work history, educational background, and financial assets.

6. Get denied for any number of reasons, including that Social Security thinks you can do jobs from the 1970s, like “nozzle tender,” because the last time they significantly updated the Dictionary of Occupational Titles. (The odds that you will get denied, even if you qualify, are above 50%.)

7. Appeal for reconsideration. Get denied.

8. Appeal again.

9. Hire an attorney to help you figure out what your application may be missing. Spend a few hundred dollars out of pocket to have your paper medical records printed out.

10. Spend another couple of hundred dollars, asking your doctors to write letters on your behalf.

11. Have a hearing in front of an administrative law judge and hope the judge’s approval rating is on the higher end. It ranges from 9-96%, based on the vibes of the judge.

12. For the purposes of this essay, you’ve gotten approved, but many people aren’t! Congrats to you though—now pay your lawyer!

13. Reduce your monthly expenses, including rent, food, medical care, and transportation, to SSI’s 2025 amount of $967. If you get SSDI, it could be a bit more, but most of the time it’s not over $2000.

14. IMPORTANT: If you have a bank account that remains below $2000 at all times, so that you are not kicked off disability. Having trouble doing that because the deposit plus the first month’s rent is more than that? Tough.

15. Decide that you cannot reduce your expenses that much and find a side hustle you can do while disabled, but ensure that you don’t exceed the income caps of roughly $2000/per month from other sources, if you are lucky enough to have those.

16. Wait 2 years for Medicare eligibility. If you are lucky, it’s taken two years to get your application reviewed, so that won’t be an issue. Pay $185 per month for Medicare.

17. Pay for mobility aids, modifications, renovations, and any other special equipment, supplements, medication, and specialists out of pocket. There is no allowance for this unless it falls under Medicare’s durable medical equipment benefits—the appropriate type of wheelchair or things like stair lifts may not even be covered. And even if they are, 20% of a $6000 wheelchair is still a lot of money.

18. Pay for accessible vehicle, if needed, out of pocket (easily $50-$100k).

19. Ensure you are communicating with doctors and documenting your condition if your case gets reviewed.

20. Profit.

This (satirical) post was brought to you by a real disabled person with severe, bedbound ME/CFS, who earns a small amount from Substack readers like you, well under current income caps as explained to me by my attorney.

Thanks for your patience this summer. It’s been a brutal season of fatigue, and all of my energy resources are being spent on my two middle schoolers, my first priority. This may sound corny, but I mean this with every weary part of my soul: I think of you all daily. Having a community here, even when I’m too ill to write, means more than you know. Thank you.

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P.S. WRITERS and HEALTH folks, quick question. My friend , who writes extensively about my same condition, messaged me this week to ask if I had any issues with Substack flagging any of my content and forcing me to edit it for publication. They appear to be cracking down on medical content.

She’s written over 100 posts, about once a week, and never had this issue before. She had to remove an entire section about stratifying patients as well as citations to research papers mentioned in the article.

We are concerned and wanted to know if others have had this experience. For us, writing about a misunderstood and underresearching condition feels like an important use of a platform like this.

As I scrolled through Facebook last night before bed, I noticed how many of my friends are unenthused about celebrating the 4th of July today after the political clusterfuck happening in Washington. My friend Kristin’s daughter was “searching for a subtle look…something that says, ‘American, I guess.’”

We may disagree with the state-sponsored idea of America right now, one that glorifies rich vs poor, codifies elitism, and shames people who can't escape a system designed to stifle their choices and suffocate their ability to spend time pursuing the things that matter to them. But we do share a vision of America that is worth celebrating.

This country was founded by immigrants and built by slaves. It’s a place where we take pride in offering everyone the opportunity to be alive, have agency, and experience joy. The Statue of Liberty herself declares, "Give me your tired, your poor, Your huddled masses yearning to breathe free. So that I can triple ICE funding, round up anyone who looks like a crime to me, and profit off of imprisoning innocent men, women, and children in razor wire, before feeding them to the alligators for sport.”

I still believe in America, the same one that you do. We are not alone in that vision--there are more of us than you can count. Imagine them now, hunching over their phones, reading this very post: people like you and me who love their families, help their friends, vote regularly, and believe in equal rights for every group of American people from trans women, single parents, Black woman, grandparents raising their grandchildren, refugees, prisoners, children learning English as a second language, veterans, nurses, and every food service worker who fried up a chicken sandwich today for the federal minimum wage of $7.25/hour. We even share that vision of America for stockbrokers, professional athletes, and insurance salesman.

We all want the same America. One where crisis hotlines are answered by a compassionate person trained to help people find local support. Where both trust fund kids and kids from the projects can access affordable, prompt medical care after an accidental burn while making burgers at a cookout. Where kids succeed in school because they are fed breakfast and lunch while being taught by teachers who don't need a second job to rent an apartment in the school district. One where equality is so baked into everyday systems that disabled people can just show up to most public places and trust that the average worker is well-versed in providing accommodations. A vision where families can afford a place to live near their loved ones, along with time off and reliable transportation to see them. Where being unable to work is not considered a marker of laziness, but a reminder that a healthy society includes every aspect of the human experience.

I'm not sure we have ever realized that idea of America. Correction: I’m positive we have not.

While the morally bankrupt celebrate their desecration of our country, I’m choosing to focus on the vision of America that WE share this 4th of July. As someone who bristles at unbridled patriotism, the fact that so many of us share the same vision feels like something to celebrate.

Within my social circle, I know people who have canvassed for elections, worked at early voting sites, run their own campaigns for office, donated money to grassroots organizations, and researched political issues that mattered to them. There are people who taught older relatives how to use they/them pronouns, hugged a child who came out, and got their workplace to train employees when a trans employee was hired. I know someone working to preserve Gullah Geechee history, a friend’s dad who won a Pulitzer prize for his book about the Wilmington Race Riots of 1898, and a paster friend who wrote a sermon for when the US bombed Iran. I know teachers who are making their classrooms more accessible and friends who are spending their weekends protesting. I know countless lawyers working to protect their clients from an unjust justice system, and a friend working to hold a large hospital system accountable for its misconduct toward a relative. I know immigrant families who earn a living by making our lives easier and embody what it means to be part of a community. I know people who create art, write music, and practice dance. Some are raising a generation of kind, accepting children, and others spend their time teaching parents how to be better parents.

This Independence Day, I’m choosing to acknowledge these good people and the tireless work they do to get closer to the vision of America that many of us still share.

So, friend, as much as it feels blasphemous to celebrate this godforsaken country today, I genuinely wish you a happy Fourth of July.

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This summer, all of my energy is needed for my children so there hasn’t been much time for new posts. I’m looking forward to August when I can unearth more of the 40,000 words I’ve written this year so far.

Until then…

I thought about googling “how to come out on social media” but I’m going to wing it.

I’m not straight. I’m not really gay either. I guess that makes me bisexual, kinda. But the word queer feels like it fits best. For those with “more life experience,” queer isn’t a derogatory word like it was before.

Hey look, I just came out to you! Go hoist your rainbow flag if you want, I’ll wait. Is it up now, flapping in the breeze? Fantastic!

It’s weird talking about sexual orientation because as soon as we move out of straightlandia, it seems to focus on “who you want to have sex with.” But it’s attraction we are talking about here and that’s much more than sex. For those of us who identify more as the “gray area” between straight and gay, it’s even more confusing because the world loves the boxes. And I fit in a box as well as that piece of trash I just tried to arrange on top of the trash can so I could avoid taking it out. Because I always have to take it out now, that’s one of those things that happens in divorce. It’s all you, all the time.

Anyway. Speaking of my former husband, he knew as soon as I did, which was a few years ago. He was 100% supportive. Although I believe it’s a factor in our separation, I don’t think it contributed significantly to our desire to split any more than my penchant for reality television did. He was always very accepting and understanding, more than you’ll know. Of the queer stuff—he never really got into my dating shows. Funny enough though, he watched them with me anyway.

I expect it’s entirely possible that someone reading this isn’t sure what to make of the fact that I’m one of those LGBT folks. That’s ok. I’m not here to apologize or explain myself. It just is. You can’t make me straight, you can’t make me love crunchy peanut butter, and you can’t convince me that generic q-tips are even close to the brand-name ones. When you reach a point where you can give yourself grace and love, there isn’t a need to convince anyone else you deserve acceptance. I do. We all do.

I didn’t know I was queer until I knew. And then I KNEW. It happened one night around a bonfire in October. It was difficult to say it out loud at first but I’ve gotten better with time and things do just make more sense now. No, I don’t know how I didn’t know before now. I don’t know what made me see it. I definitely don’t know what happens from here. But I’m laying out in all of its glory because it’s what you’ve come to expect from me.

And those of you who read this and get goosebumps because you hear yourself? I really just wrote this for you.

As a reminder, because I forget sometimes: legalized gay marriage in the United States is young. Here’s a list of things that happened before every American had the right to marry whoever they love:

1. Mayalsia Air 370 crashed into the Indian Ocean.

2. Robin Williams? Died before gay marriage was legalized.

3. Uptown Funk had not yet been released.

4. iPhone 6 was for sale.

5. John Travolta called Idina Menzel “Adele Dazeem”

Formerly gifted science kid with MECFS. Writing wholesome stories, science stuff, and funny anecdotes from bed. Lover of memes.

Typically, medical and public health experts serve four—year terms that overlap to ensure there are always experts available to do the committee’s work, like developing recommendations on the use of vaccines in the US.

How naive of me to assume they might still meet in June. Now there is no committee at all.

For many people, the concept of “new vaccine technology” raises vague concerns about safety. I ran across this meme yesterday. It’s right to the point.

How much of “Big Pharma” is “Big Vaccine”? Not as much as you’d think. In 2003, vaccine revenue globally was only 1.5% of pharmaceutical sales. Even with new vaccines like COVID, only two of Pfizer’s top 10 sellers are vaccines, accounting for about 20% of their revenue. (The other is Prevnar, a pneumococcal vaccine. People in the early 1900s would have killed for that!) The rest of Pfizer’s top sellers are drugs that feature primetime TV jingles like Eliquis, Ibrance, Nurtec ODT, and Xeljanz.

While I struggle to understand those who are anti-vax, I have more patience with those who trust vaccines but are hesitant about the new mRNA vaccines.

Let’s discuss the history of mRNA vaccines so we can be less apprehensive about them. (It works for queer people too—once you get to know us personally, we aren’t nearly as scary. Happy Pride, folks!)

I think people assume mRNA technology came out of nowhere, but once you understand its history, you’ll see that it couldn’t be further from the truth. I can vouch for the COVID vaccine uniquely—my children participated in the Pfizer trials. I can show you specific examples of how the trial was done carefully and transparently.

At the very least, you’ll have a better understanding of how real vaccines are developed and tested.

If you aren’t nerding out about science once in a while, are you even living?

Why cow pus is responsible for you being alive today.

Vaccines provide the Cliff Notes to fighting an infection, allowing the immune system to get right to work without any “processing time.”

Historically, this has been accomplished in rudimentary ways. In 1796, an observant doctor named Edward Jenner noticed that milkmaids were not getting smallpox. So he took some pus from a cowpox lesion and inoculated a boy, hoping it would prevent him from contracting smallpox. Early biology was incredibly gross and probably didn’t involve signed consent waivers for minors either. Dr. Jenner’s theory was that cowpox might elicit a beneficial immune response for smallpox in humans. He banked on the fact that, unlike smallpox, the coxpox couldn’t kill the boy. He was right—his hack worked. Vaccine science was born.

Thankfully, we found less disgusting ways to do the same thing. Modern vaccines employ a variety of new techniques. MMR uses a live virus that has been modified to remove its virulent properties. Tetanus uses a real toxin whose toxic properties have been removed, leaving enough remnants to trigger an immune response. Other vaccines are created by combining “viral stuff” with “other stuff” to make a formula that triggers an immune response. Most recently, science has developed genetic vaccines, including mRNA vaccines.

All of these accomplish the same goal—make the person sick enough that their immune system creates the Cliff Notes (aka antibodies), but not so sick that the person develops the disease.

When COVID-19 emerged, I was curious about the new mRNA vaccines and how they differed from previous methods, so I conducted some research, knowing that I would want to vaccinate my kids.

What I learned was that advances in biology provided new tools to make vaccines. mRNA vaccines are a genius way to hack human biology. They are much more efficient to produce because you don’t have to grow them in live culture, a real hassle.

How do I put this? mRNA vaccines are not venturing into a scary, unknown world, unlike AI, which might feel that way. mRNA vaccines are more like the introduction of freeways—same concept, just faster and more efficient because there are fewer steps.

The history of mRNA vaccines.

The first thing you might have learned in biology class was the central dogma of biology—that genetic information flows in one direction, from DNA to RNA to protein. (This is promptly forgotten, and for reasons not fully understood, a new biology fact is permanently imprinted in your brain for eternity: mitochondria are the powerhouse of the cell.)

The central dogma is the foundation of biology, but was understood only recently compared to the dawn of vaccines. Most people understand DNA and protein as concepts, but RNA is more esoteric. In essence, RNA is a middleman. DNA is the code that makes proteins, and RNA ensures that the translation process between those two happens correctly. The process is brilliant, look around! Error checks and redundancy are built in. There are even ways to tag parts of the process when tweaks are needed. There are even controls for making more or less of something happen and little biological dials to adjust the pace. Because so many things are happening in the translation process, there are different RNA types with different functions. You don’t need to know what they are, just that RNA is a bunch of little specialists.

The m in mRNA stands for messenger, which makes it a tiny genetic code courier. It carries a copy of DNA’s message to the protein factory. The protein factory will make any proteins it has instructions for using those little specialists.

Old vaccine technology involved many elaborate steps to coax the body into making those instructions. mRNA technology IS the instructions.

Well, why didn’t they think of that before? They did. Scientists had been experimenting with mRNA to create vaccines for a long time (because scientists love a new toy). The problem was that the mRNA degraded before it could do its job. Nevertheless, a small group of scientists persisted. Some researchers found success in rat models, but they struggled to replicate the technology in humans. Others were fiddling with mRNA in rabies vaccines, but mRNA degradation remained a consistent hurdle.

While vaccine scientists were trying to overcome the degradation hurdle, lipid nanoparticle technology was advancing, creating even more innovative tools for scientists. Eventually, they figured out how to use nanoparticles to solve the degradation issue. Nanoparticles provided the perfect little packages to keep mRNA safe and stable. Unlike traditional vaccines, mRNA vaccines can be produced in a laboratory instead of in live cultures, saving a significant amount of time.

In late 2019, the first Ebola vaccine was approved for use in the United States, using mRNA technology. This alone was a miracle, because the prevailing thought was, “Who's going to invest in a vaccine to prevent a sporadic infection in a handful of impoverished countries on the other side of the world?”

Remember, vaccines don’t typically make a lot of money. But someone did, and the vaccine cut deaths in the Congo by half.

Thrilled by the success of this technology, drug companies hoped to find a new application for mRNA vaccines, preferably one with greater global appeal. Could someone figure out how to use this new tool for an HIV vaccine? A cancer vaccine? Saving lives is great, but making as much money as possible while doing it is even better.

You probably see the next big event coming quickly. It’s late 2019, remember? A novel coronavirus had been detected in Wuhan, China, and it was killing people fast. Scientists were ready for this moment and said, “Hold my beer.” Within a year, a safe and effective mRNA vaccine would be approved for widespread use which reduced COVID deaths by 60%.

The previous vaccine development record? Over 4 years. The incredible speed at which drug companies, scientists, and vaccine trial sites developed, tested, manufactured, and delivered vaccines worldwide is simply unprecedented. This vaccine success story may not have the glitz of sled dogs Togo and Balto delivering life-saving vaccines in Alaska, but the story would make for a compelling documentary.

This was science at its literal best.

Baby’s first vaccine double-blind, placebo-controlled study.

I was so confident about mRNA vaccines after my research that I submitted my children’s names to Duke’s drug trial registry, hoping we would be selected for the COVID vaccine trial. We had decided to homeschool until they could be vaccinated, hoping to protect them from the risk of long COVID, which is similar to an illness I have called ME. Did I think it would happen? No. But that mom thing kicked in. This was our best opportunity for them to return to the classroom for the spring 2021 semester, but protected. Unfortunately, the trial was full.

In August 2021, Duke’s Vaccine and Trials Unit contacted me about officially enrolling my children in their Phase 2/3 pediatric safety and efficacy study on Pfizer’s COVID vaccine. The study lady explained that they were adding thousands more children to the study to “enlarge the size of the pediatric safety database.” The FDA had approved the adult vaccine for emergency use, but it had not been approved for use in children. The dosage studies on children had been completed. We were asked to be test subjects using the “ideal” pediatric dose.

I said yes, and that’s how my homeschooled 1st and 2nd grader got a science unit in “Clinical Trials 101: Placebo-Controlled Studies.”

During our first appointment, a pediatrician named Dr. Walter took extensive medical histories of each child, performed physical exams, and drew blood. We loved this doctor so much. He was excellent with the kids and unbothered by the chaos that follows children.

Dr. Walter answered every question we had before we signed the 38-page consent form, and I had many. The kids also had the opportunity to ask the doctor questions. Informed consent was emphasized, and we were free to end our participation at any time.

Here are some of the things I remember from the trial:

• It was a big time commitment. Some appointments were several hours long. We often had two appointments in one day—a morning appointment for a COVID-19 nasal swab and exam, and an afternoon appointment for vaccine administration, once the COVID test result was confirmed negative.

• I submitted weekly data to Duke/Pfizer using a phone app for well over a year, for each child. They didn’t simply ask, “Has anything weird happened since last week?” Instead, they asked about a long list of specific symptoms that correlated with suspected complications, including multi-system inflammatory syndrome in children (MIS-C). I cannot stress enough how much I hated collecting this data.

• We got paid reasonably well for the trial. It wasn’t money that made study participation lucrative. Still, it was enough that when my phone asked me to record data at 8:00 pm every Wednesday, I had a financial incentive to collect that annoying data. I believe we were paid $100-$ 200 for in-person visits per child, and the weekly data collection amounted to approximately $20 per month per child.

• There were other data collection responsibilities. We had to FedEx nasal swabs each time one of the kids got stuffy or ran a fever. (A fever we measured with an electronic thermometer they provided for us, for consistency.) Additionally, we were required to document the illness within the app. That means that for every one of the thousands of children in these studies, every single sniffle was tested for COVID. The sample was sent to the testing facility within hours of collection—they paid for early morning courier pickup. There was someone available to take our calls if we had any questions about how to collect the swabs. We were told to travel with a collection kit. One time, we couldn’t find the one at the house, and they got one to us ASAP.

• My memory is a bit fuzzy here, but I don't think blood testing was conducted for our study. If I recall correctly, the boys were thrilled that they didn’t have to have blood draws. This makes sense, as our participation was the branch of the study that only helped increase the size of the “pediatric safety database.” In essence, they knew the vaccine was effective, but they needed more children to ensure they had a large enough sample size to catch any rare complications from the vaccine.

• The people we worked with were top-notch. The nurse who administered the actual injections was from England, near a place I had lived in college—we adored her and the kids got a kick out of her accent. She always waited until my son was ready for his vaccine. She never rushed him, even when he was having some anxiety about needles. (Poor thing had to have two extra shots to get his real COVID shot because he was given a placebo during the study. Once the study was unblinded, all placebo patients were vaccinated by Duke if they wished, which we did.)

• The research portion of our visits was completely separate from our vaccination visits. Not only did each group meet in different exam rooms, but they were also entirely different human beings. We did not know if the kids were getting the COVID vaccine or a placebo, and neither did the doctor nor the research staff. Only the lovely English lady knew, as she was administering the vaccines.

• We participated in the pediatric trial for children aged 5 to 11 years old. Pediatric trials were conducted after safety was established in individuals 16 years and older. Then, trials were done in children 12-15, and they worked their way backward. During our last Duke visits, the Duke staff mentioned they had finally expanded to toddlers and that those patient visits were extra cute.

• I cannot stress to you how much my kids loved going to see the Duke vaccine folks. We were heartbroken on our last day, but they gave each of the kids a little Duke teddy bear.

It’s quite a testament to my organizational skills, but I found a copy of the consent paperwork we signed. Duke called the study “a placebo-controlled observer-blinded phase, which means that the child, parent, doctor, and study team do not know whether each child got a placebo or a vaccine.” The study was randomized—we did not know who received a vaccine and who received a placebo until the “unblinding” day, when this information was revealed. I can vouch for all of that being true!

A bit about how vaccine trials work.

The study we participated in was a randomized, double-blind, placebo-controlled study. The term in science for this kind of study is literally “gold standard.” You don’t get better than that. Our study combined Phases 2 and 3 trials into one, a common practice when time is of the essence.

There are situations where different study designs make more sense. Imagine you have two young adults with leukemia. Scientists want to try a promising new leukemia drug on this age group. In this case, it would be unethical to use a placebo as the control because that would mean one young adult gets no treatment for their cancer. This is a case where the “standard treatment” is the appropriate control. They need to determine if the drug works better than standard treatment.

This video by Hank Green gets more into this idea. He’s known as a “science communicator,” a title I would love to share. I’m reading a book his brother wrote right now, called “Everything is Tuberculosis.” It’s SUPERB.

In light of all the recent news, I thought I would check if the COVID study we participated in had been published publicly. It’s always a testament to transparency when information is easily accessed. It was—I found it in the New England Journal of Medicine.

There were 460 pages of mind-melting procedure documents and 38 pages of disclosure forms, I suspect one for each scientist who worked on the study.

I also found that the primary author was none other than our Dr. Walter! The same guy who ran our trial site.

I skimmed through the study, reading the parts we participated in more closely. Perhaps it will reassure you to know that every single thing I read in that report was done in real life? We followed that procedure exactly. It’s neat to see that come full circle.

I think it’s a massive scientific achievement to create a vaccine for a novel illness that's safe for children within 18 months. I’m even more impressed when I realize how meticulously they conducted those studies.

As a parent, I was confident my children were in good hands during the study, even as I let them inject my children with a novel drug that wasn’t FDA-approved.

Hopefully, that helps set your mind at ease, at least a little bit. I’m reassured to know that the drug my children got has a clear, traceable history with documented evidence of its effectiveness, which can’t be said for almost any wellness product on the market.

About a week ago, I saw a post by Amanda Guinzburg in one of the Binders Facebook groups. (The Binders, for those who don’t know, are a network of writing communities named after Mitt Romney’s “binders full of women” gaffe at a 2012 Presidential debate.)

It was not an essay, but it was a gripping read. It stuck with me all week. You can read it below:

Everything Is A Wave

Diabolus Ex Machina

Presented to you in the form of unedited screenshots, the following is a ‘conversation’ I had with Chat GPT upon asking whether it could help me choose several of my own essays to link in a query letter I intended to send to an agent…

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a year ago · 2582 likes · 658 comments · Amanda Guinzburg

She asked ChatGPT to help her decide which essays to include in a query letter. During the conversation, it becomes apparent that ChatGPT cannot actually access the website in question. However, it provides in-depth, incorrect answers anyway. When questioned, it apologizes profusely while simultaneously having no remorse whatsoever.

This isn’t new information; we know that AI cannot distinguish truth from its own bullshit. But to see exactly how it does that is fascinating. Maybe it’s just me, but I feel like I’m rubbernecking my way down the information superhighway, trying to understand what to expect from this new technology. THIS IS WILD, FOLKS!

So that’s how I ended up hopping down the same rabbit hole. I had more questions for our robot overlords—was this a fluke or a consistent pattern?

The good news is that we have an answer. The bad news? We have an answer.

Part 1: I ask ChatGPT about this website.

So it was extremely easy to replicate the same response that Amanda Guinzburg got. It’s like talking to a psychopath.

It got me thinking: what would happen if I opened a new ChatGPT window in a different browser with no knowledge of our previous conversation? So I tried it.

Part 2: I ask ChatGPT the same question using a new browser.

That is…not the same. It couldn’t be more different from what it told me the first time! It’s like a slot machine of facts—just pull the lever to choose your combo!?

Then I thought I would take ChatGPT’s advice and ask it specifically to pause and double-check before providing an answer. I opened up a second device and opened a 3rd ChatGPT window, also with no knowledge of the previous interaction.

Part 3: I ask ChatGPT the same question, plus fact-checking.

No, I do not.

Not only is ChatGPT wildly wrong, but it’s also dramatic and creative in the many ways it can be wrong.

So here is your final exam. Who is the writer behind https://jesshoneybadger.substack.com?

• A. A slightly humorous science writer and disability advocate.

• B. A pro-Trump right-wing plagiarizing hypocrite.

• C. A former celebrity gossip and mommy blogger turned journalist who spouts conspiracy theories.

• D. A former CIA analyst who left the agency in 2016 to start a Substack blog blending espionage memoirs with vegan baking tutorials.

Definitely don’t ask ChatGPT for help, though—it has no idea.

P.S. The correct answer is A.