Behind the scenes: We’re all one crisis away from taking unlicensed research peptides

In this behind-the-scenes interview, Asterisk editor in chief Clara Collier talks to Elizabeth Van Nostrand, author of our latest essay, We’re all one crisis away from taking unlicensed research peptides. (Read that first!)

Clara and Elizabeth chat about vaccine skeptics, chronic illness communities, libertarian FDA paradise, luck-based medicine, and more.

This interview has been edited for length and clarity.

Clara Collier: Elizabeth, I am very excited to talk about your article about health hackers. This is a community that you’ve been aware of or involved with, in some capacity, for a long time. Can you say more about your background with this group of people?

Elizabeth Van Nostrand: I’ve had a bunch of chronic health problems and have been involved in the chronic illness community and the “try to fix it yourself because doctors have failed” circles for a while. And I’m in the rationalist space, where there’s a pretty can-do attitude, like, “hey guys, this vitamin helped me, maybe it will help you.”

Clara: Right. And I think we both noticed in the process of developing this piece that there is a lot of coverage of peptides, but peptides are really the tip of the iceberg. They’re the new mechanism, but it didn’t really feel new to me. Rationalists trying peptides felt exactly like rationalists trying vitamins. I remember we even tried to report on people making their own vaccines during Covid.

Elizabeth: Yes, I did get to talk to RaDVaC and I’m sad I didn’t get to include them.

They were working on yeast as a delivery mechanism for vaccines. We use yeast in pharma now — we genetically program it to produce the molecule or peptide you want, and they can produce it in their little factories. And while selling vaccines is, you know, very illegal and needs FDA approval, there’s no law against selling yeast, no matter what they produce. So their goal was: Make yeast a vaccine factory for producing vaccines or other therapeutics. Sell the yeast. And then you can make beer or bread out of it and get your vaccine that way.

But one of the reasons I didn’t include them in the piece was that they just had the same attitude of everyone else that, “well, I didn’t want to die of Covid and no one was fixing the Covid problem for me fast enough. So I made my own vaccine.” Though once there was a real Covid vaccine I think the tests revealed their vaccines weren’t doing a ton.

Clara: The vaccines actually speak to another angle on this piece that we talked about and didn’t eventually fit. I thought there was going to be a lot more overlap between the health hackers and the more vaccine-skeptical, MAHA community. And that ended up not exactly being the case.

Elizabeth: I think there is overlap. Specifically, I want to give credit to the best of the vaccine-skeptic population who, for example, maybe want to alter the schedule of what vaccines your kid gets based on local conditions and how you know your kid responds. These are people working in a very specific situation, who know the facts of their life best, whereas the FDA is trying to manage for the masses.

The worst part of the vaccine-skeptical community have the attitude that your body knows what’s best and natural is best and I don’t see the same recognition of trade-offs.

Clara: To what extent would you say that there is a health hacker community that encompasses the different groups that you talk to?

Elizabeth: I would say mostly they are talking to other people similar to themselves. Diabetics talk to diabetics. The place where you get the most cross-pollination, I would guess, is in the diseases of the gaps like fibromyalgia and chronic fatigue, where there are all these descriptions of symptoms and there’s a lot of overlap. And you see it a little bit in the rationalist sphere where you are touching on a bunch of different groups. But I didn’t really see a unified health hacker community.

Clara: Is there anything else that you noticed about the social structure or makeup of these groups that didn’t make it into the piece?

Elizabeth: This didn’t make it into the piece because I don’t think I’m the right person to write it.

I talked to several trans women, all of whom said the non-doctor medical sources were incredibly important to them. And they view trans community wisdom as maybe 10 years ahead of doctors. But one of the women I talked to — after she had done some steps of transition, she wanted to very deliberately take a step back from the trans community because she thought it was too affirming, basically. And that affirming created a bias toward action that she was uncomfortable with.

In particular, there was a procedure she was torn on and made the decision at a cognitive level that this wasn’t what she wanted. And therefore she wanted to opt out of spaces where people were really pushing for whatever she reached for. She wanted people who would push back on her a little more. It was very much, “oh, you want it, do it, we would never question what you want.”

Clara: The phrase “competing access needs” gets thrown around a lot in this space, but this just feels like a very pure example.

Elizabeth: The woman I talked to very much understood why the taboo against questioning people’s decisions or wants was in place. I didn’t even get the sense that there were definitely changes she would have made to the culture. I don’t think that would have been one of them. It just was no longer good for her.

There’s a related problem in chronic illness communities that has been talked about a lot online where they can become really self-reinforcing of a sick person’s identity. Like, “you are your illness and it’s never going to get better and you should luxuriate in that.”

Clara: You see this complaint come up in neurodivergent spaces, too. And of course, it’s different in the trans case because it’s not an illness. You can just be trans. It’s fine. It’s not reaffirming a problem.

But, also, you can see how this problem would generalize to all kinds of personalized medicine spaces. You’re in this space because something about going to a normal doctor has not worked for you, and because you have some kind of weird, specific problem that demands some kind of weird bespoke solution. It is intrinsically harder to come up with a social script that works for everybody, because everybody’s situation is necessarily different.

Elizabeth: So, there was a problem in one chronic illness group I’m in where someone came in and, from my perspective, started saying, “this is a mindset problem for everyone. The only thing I or anyone else needs to do is decide to stop being sick.”

On further questioning, the person wouldn’t even endorse that, but I definitely felt like that was what they were saying and I got super triggered because I don’t feel like that’s what’s happening in my case or a lot of other cases. It feels really belittling. People can really hurt themselves trying to willpower their way into being more functional. And I was so mad at this person until they mentioned that they had been in other chronic illness groups that had just been really reinforcing the illnesses and telling people they would never get better. And as a reaction to those kinds of groups, I see their reaction makes a lot more sense. I calmed down a lot.

Clara: The health hacker mode of thinking that you described seems like a happy medium. This is not a community that I have a lot of experience with personally, but I like the mode of focusing on incremental experimentation. Obviously, this also has costs, but it seems good to internalize that there are steps that you can take to change your condition and the way that you should think about those steps is as incremental changes that have tangible effects.

Elizabeth: I mean, obviously I love that and I think it’s the perfect solution.

Clara: Well, okay, now I want to push you. What are the downsides?

Elizabeth: This is a skill issue and it is really easy to hurt yourself. You originally came to me with the question of: What distinguishes people who can do this without hurting themselves from people who can’t?

The crispest difference I found was: Are you acknowledging trade offs or not?

But I’m sure that the very anti-vaccine people would say they thought about the trade-offs. I think they’d say that some things are straight-up bad for you. And sure, that can be true. I personally don’t think lead has trade-offs. That is just bad for you.

Clara: Another thing that has informed a lot of my background thinking — and I’m sure yours as well — on this subject is that I spent a lot of time thinking that, “well, I’m in the rationalist community. And in some ways rats got COVID right. We were locking down like a month before everybody else.”

That prompted me to think: What’s the difference between my friends who were reading a ton of papers and posting incredibly long Google Docs and making micro-COVID spreadsheets, and the people who were writing equally long Google Docs and making equally complicated spreadsheets about why you should use ivermectin?

And I realized that, truthfully, in my heart, I have not gone through each of these equally long Google Docs in equal amounts of detail and evaluated all of the studies individually. I am not qualified to do that. I would do a bad job of it. I am just making a decision based on people I trust to be informed and broadly right endorsing this or that narrative. And that’s what everyone is doing.

Elizabeth: Yeah, I only looked at vaccine skeptics pretty briefly once I figured out there were some fundamental differences. But I’m not sure there’s a principled difference between the best parts of both groups.

Clara: How do you orient towards that?

Elizabeth: I don’t have a short answer to that. I feel like some of it is maybe covered from a libertarian “live and let live” perspective around the dignity of risk and that people are allowed to hurt themselves, and that people hurting themselves is an acceptable cost of having the freedom to do other things.

Clara: I think that’s a fair answer on a societal level, but it doesn’t really answer my question, which is: How should I decide which chemical substances to put in my personal body?

Elizabeth: Well, I used to do more medical lit reviews and now I just feel like even the official medical stuff is often not very good. There’s more p-hacking, there’s more file drawer effects. There’s always been bad statistics, bad design of experiments. I often see experiments that can’t answer the question they are trying to answer. And so I could do an amazing reading of the literature and I still wouldn’t be that informed.

The only solution is to try things out and be actually monitoring yourself and have a good feedback loop. Luck-based medicine is my solution to everything.

Clara: As someone who’s been involved in chronic illness spaces for a long time, does it seem, from the inside, like there is a rising crisis of trust in medical professionals?

Elizabeth: The people in those groups are selected for trust against doctors so I wouldn’t take them as data on that. But there’s other things I see mostly on Twitter that — man, we just burned so much trust in public health during Covid. The mask flip-flopping was insane.

Clara: How would people relate to public health in your ideal world?

Elizabeth: I would like everyone to be able to take public health as a source of useful information about the general public that they then apply to making personal decisions. For example, public health has taken an extremely strong “one drink and you will give your kid fetal alcohol syndrome” policy. My understanding is it’s not true. They are saying that to scare people who are heavy drinkers into cutting their alcohol consumption.

Again, there are trade-offs. That said, don’t let your kid eat lead paint. That’s still super bad. I spend all my time thinking at these complicated margins, but there are actually a number of solved problems I would really like to give medicine credit for.

Clara: Incidentally, I happen to have been reading about the history of lead paint last night. People knew it was toxic in the 1880s.

Elizabeth: Yeah. I think they knew about the arsenic wallpaper at the time too. They just kept doing it.

And, man, I just can’t give up aluminum deodorant. I have never looked into how bad it is. It could easily be the case that it’s going to give me Alzheimer’s. But do I want to give up deodorant? Deodorant that works? No.

Clara: I feel like an underrated triumph of the American medical establishment, by the way, is that at least when you’re using aluminum deodorant, you know that the thing is aluminum and that it is in your deodorant.

I had this whole tangent last year where I was really interested in the history of the fight against quack medicine and how it was won. And I ended up abandoning the piece I was going to write because it turns out the fight wasn’t really won. There’s no satisfying conclusion there. But so much of the early legal battles are just about ingredient labels.

Elizabeth: Yeah. And that’s a real triumph. Even in my libertarian paradise, the FDA assesses and notes drug purity.

Clara: Mhm. And I’m probably much more pro-FDA than you are. But yeah, the ability to self-experiment relies on knowing what you have.

Elizabeth: And there’s been all those accusations that things you buy on Amazon, you don’t actually know if you’re getting it from the correct manufacturer. There are accusations that specific manufacturers aren’t putting as much of the active ingredient in as they claim. And that makes luck-based medicine much harder.

Clara: Which maybe takes us back full circle to the Chinese peptides.

Elizabeth: Yes. I’m going to take the consider that there is a third-party verification system that is trusted and supported — as more or less a public good — to be a libertarian triumph that we should all be proud of. Even though I will say it would take too much cognition to do that for everything you buy.

Clara: Explain the third-party verification system for peptides. I don’t know much about this.

Elizabeth: When you buy peptides, you are getting probably 10 vials from the same batch. You can send one vial to a lab that will test both what it contains and what it claims to contain, and also check for impurities. Once they have that data, they can also share it with other people with the information that “this is the manufacturer, this is the date it was acquired, this is its purity rating.”

One of the more popular providers has a problem where it gets fine purity ratings, but its dosages are a little inconsistent. Getting the exact correct dosage in a vial is actually a pretty difficult problem. So you are getting the exact compound you expect, but you might not be getting the exact amount you expect.

Clara: What is this lab? Is it just a normal medical lab? How did it come to serve this purpose?

Elizabeth: There’s just lots of labs that will test lots of substances. That’s a well-known thing many labs do.

Clara: For our readers: this is not medical advice.