Every week or so, something happens online that feels like event television. This week’s on Twitter was a guy who intentionally has given himself dysentery, and tweeted through the experience. Yes, you read that right, and no, he’s not insane. Jake Eberts, a 26-year-old research consultant based in DC, isn’t just doing this for lark, to be clear. He’s participating in a paid clinical research study for the development of a vaccine to prevent dysentery. While some may think of dysentery as a disease of the past, or something to reference when discussing old PC games, diarrhoeal disease kills over 500,000 children per year according to the WHO. There’s no vaccine for it, but Eberts and his fellow brave study participants are forging the path towards the development of one.
I first took notice of this group digestive event when I logged on and my twitter timeline was discussing “dysentery guy.” After realizing it wasn’t a misspelling of Blink 182’s “Dysentery Gary,” I rushed to Eberts’s timeline, not sure of what to expect. A deeply misguided attempt to lose weight? A lot of poop jokes? The worst home-science center I could think of? Instead, I found Eberts making funny, charming observations from a medical research center about the study itself, posting mood boards for the night before he gets “challenged” with dysentery, and discussing the ad he saw on instagram as well as his reasoning for doing the study. After he took a shot of the shigella bacteria, we hopped onto Zoom and chatted about the wild world of paid medical trials.
To start off, where are you? How are you doing so far?
So I am here for an inpatient clinical trial that is testing a potential vaccine for shigella, which is one of the two causes of bacteria that leads to dysentery. One of them is an amoeba and one of them is the group of bacteria called the shigella bacteria. This morning I took a big old gulp of shigella, and we are testing to see if the vaccine worked on us.
What did the shigella taste like?
We first took a little solution of sodium bicarbonate to buffer our stomach acid and make it the least hostile environment for what we’re really trying to deliberately infect ourselves with. It’s a high pH and like neutralized acids in the stomach. Then we took 30 to 40 milliliters of clear liquid that had shigella in it. They both tasted like saline
There’s almost a Fear Factor or Jackass element too, right? The confirmation bias that you know it’s gross.
I definitely had a moment where they took us up to be dosed in groups—they didn’t call it “dosing.” They call it being “challenged with” shigella. All of the staff were in their scrubs with face shields and I was like, “Oh yeah this is a biohazard.” They were gonna dispose of this in a biohazard bag. And like, I’m gonna take a shot of it.
They asked you not to clink the glasses like they were shots, right?
They preemptively told us in our little briefing “you can’t do that,” because someone had before and spilled it. So much of this involves a really funny but understandable level of intense regulation, and I’m sure if they spilled an active disease on the ground, someone would have to write a report about it.
So how did you find the ad for the study itself?
The ad itself was very funny.
I had been reading about all the horrible things big tech does through data, was horrified, and turned off all the personalization on Instagram for ads. I take data hygiene seriously. Sorry, that’s not really here nor there.
It ties in! This is a chat about wider hygiene.
True! So I turned off those ads and I started getting these blanket ads because I’m in the DC area and there’s a lot of medical research institutions. I was getting ads that were targeted to adults in the DMV area, the least specific targeting, which I think is part of it. That was in fall. I called and filled out some forms to make sure I didn’t have any excluding factors. You can’t have IBS or anything.
So the first half of this is outpatient?
Yeah. It was early February is when we started the first injection. It took two or three hours for the first shot mainly because these are not mass produced vaccines yet. They’re bespoke vaccines. They make them there.
Farm to table. How are you feeling about all the attention online?
I did not expect this! When I wrote the first thread, I was like, “Maybe this will get like a hundred likes.” I didn’t expect that within 48 hours, everyone in the epidemiological and immunological communities will have read this and it will have been read by all the staff at your clinical trial. Two very different types of social media attention that I’m getting!
I found it very delightful how transparent and self-effacing you’ve been about this and your motivations. The staff is cool with you tweeting about this?
I think they were kind of blindsided in a good way! I could totally see how they wouldn’t be happy, or if I were less scrupulous. I’m careful to not reveal anyone’s personal information. I’m careful to not to make it about, “Wow, look at this awful experience I’m being subjected to.” I signed up for it!
There are extra protocols everywhere right? Like even with flushing.
Yes! We have to put bleach in the toilet and wait for several minutes before we flush. It’s an extra layer of protection that the study is taking. They want to further decrease the very slight possibility that it will be transmitted through the public sanitation system, which by all accounts is equipped to handle it. It’s really a good example of the many ways that it’s layers upon layers of protection here to make sure that everyone involved is safe. Lots of hand washing.
Is this your first time doing a medical trial?
Yes. I had a friend who was also in a clinical trial for a different thing. It was a very impactful medication, which was part of my motivation. I was raised in a very pro-vaccine household. My dad’s a doctor and my mom was just always extremely pro-vaccine. My mom is super proud. Before I saw the ad I was like, “Oh, these trials happen somewhere in some facility in the middle of nowhere.” It turns out you can go to clinicaltrials.gov and just type in your info and you find hundreds. They’re happening all the time.
Correct me if I’m wrong, but I feel like there’s an awareness of medical trials that developed because of Covid. For better or worse, there’s a lot of discourse about medical testing and medical trials that we’re a more acutely aware of.
Yes! And also, to be clear, we all had to be vaccinated to do this. We had to get PCR testing. We got here and they were really strict about masking the first two day. If one of us had COVID, like, that’s a huge separate immunological variable that would basically mess up the entire study. It is fascinating to be able to look into this world and say like, this is how these things are approved.
You talked about this on Twitter but I’d like to restate it here—this is important research, different from doing your own research when you buy a car or get a loan or something. It was really well spoken.
Thank you! I try to sound really, really smart. To give you background, I edit Wikipedia for fun. I think a lot about how knowledge is transmitted, what it means for something to be a reliable source. Wiki has an internal grading system for articles. I’m very interested in the way something becomes a reliable source. This study for instance, will be a primary source from a medical perspective. I’m the raw data. Sometimes we rely on regulatory agencies and third party groups to police consumer products, complex ones like cars. We all think we’re perfectly intelligent. But as a whole, we are all very stupid actually. Like we as humans are dumb. We do dumb things. We are bad at things.
Are they adjusting your diet at all?
They have a caterer. I described it as upscale airport food and, like, it’s fine. It’s not elementary school gross cafeteria food. I think their main goal is not necessarily nutritional, but keeping us hydrated.
You describe yourself as a liberal and a progressive. How does this interact with your politics, if at all?
Well, so there’s definitely an ideological aspect to this. This is a publicly funded trial. This is not a pharmaceutical company. [Pharmaceutical companies] don’t go after these things because this is not a disease that is common in the United States. There’s no pressing need for it here, and so you would not make a lot of money. The people who need it are the poorest of the world and they’re destitute. That’s where the state comes in with the National Institutes of Health. The funding for this trial specifically running it right now is the Bill and Melinda Gates Foundation. This is a state institution. The goal is not profit.
I’m on Truvada. You can use Truvada prophylactically, which is you can use it to prevent the infection of HIV in the first place, which is an incredible breakthrough. Gilead Sciences, which is a pharmaceutical company, designed the original drugs. Gilead did some insane price gouging for Truvada. After a lot of lobbying, a lot of angry gays screaming at the top of their lungs at Gilead, at a Senate hearing, Gilead started to distribute some of it for free, but I know a lot of gay men who just could not take it because they didn’t have good enough insurance. They could not get access to this drug. The thought that there is a lifesaving drug partially funded by tax-payer money that could save a large number of gay men from a plague that killed a lot of us in the ’80s and ’90 and was deliberately withheld because of profit motive just makes my blood boil. I have just utter contempt for that. Pharmaceutical researchers at these companies are not bad people. They do important research.
I can hear your voice shaking.
It makes me so angry! In terms of me being willing to take on this really ugly disease, dysentery, I am much more willing to do so because I’m much more confident that it will actually be deployed where it needs to be. I don’t wanna valorize myself too much here. The money’s an incentive too, of course! But the underlying values of this being a public health trial is really, really important to me.
How have the more superficial things been so far?
They’ve been great here. The study was originally supposed to happen two years ago apparently, but obviously Covid pushed that back. I’m sleeping in a big room with other people. I don’t love the pillow they gave me. It’s a very sad pillow. I’m sleeping among four or five other guys. I have a little section to myself.
So the important question: How many bathrooms are there?
I haven’t counted! I think there are eight or nine. There are two other rooms that are like mine, just an array of beds.
How many showers are there?
Four. Three dedicated men’s showers and then a weird one next to the laundry room. I guess so we can throw our scrubs directly into the machines? There’s piles of scrubs everywhere so we can change into fresh ones. They can’t have waste all over them, obviously.
How is the audio dampening in the walls? Is there relative privacy with sound in there?
It’s PAPER thin. The toilets are super loud. My guess I’ll get used to everyone hearing it very quickly. I’m not going to give a shit pretty quickly. No pun intended.
Are the toilet seats at least sloped ergonomically?
They’re not great, Rachel. Not great.
Are there any questions that people have not asked you that you’re surprised that they haven’t asked you?
There haven’t been a lot of questions from people on how they prevent the disease from getting out. No one seems to be curious how we’re making sure to not infect the good city of Baltimore with dysentery.
I would guess part of that reasoning is dysentery in the Western world sounds like an old timey disease? To us, it’s an Oregon Trail meme. Our brains aren’t built around the needs of the developing world, just our own.
Right. But it is highly infectious if it gets out. One of the requirements to be accepted in this study was that we cannot work in food service in any way. We can’t live with someone or regularly take care of someone who’s below the age of five or over the age of, I think, 65.
Well, I and many others are rooting for your health on the other side of this. Good luck!
Thank you. I will need it. It’s up to God and my gut now.
To keep up with Jake’s gastrointestinal adventure, follow him on Twitter at @wokeglobaltimes. If you’d like to participate in clinical trials of your own, head to clinicaltrials.gov to find some in your area. This interview has been condensed and edited for clarity.