Like many nerdy people, back when I was healthy, I was interested in subjects like math, programming, and philosophy. But 5 years ago I got sick with a viral illness and never recovered. For the last couple of years I’ve been spending most of my now-limited brainpower trying to figure out how I can get better.
I occasionally wonder why more people aren’t interested in figuring out illnesses such as my own. Mysterious chronic illness research has a lot of the qualities of an interesting puzzle:
There is a phenomenon with many confusing properties (e.g. the specific symptoms people get, why certain treatments work for some people but not others, why some people achieve temporary or permanent spontaneous remission), exactly like classic scientific mysteries.
Social reward for solving it: Many people currently alive would be extremely grateful to have this problem solved. I believe the social reward would be much more direct and gratifying compared to most other hobby projects one could take on.
When I think about what mysterious chronic illness research is missing, in order to make it of intellectual interest, here’s what I can think of:
Lack of a good feedback loop: With subjects like math and programming, or puzzle games, you can often get immediate feedback on whether your idea works, and this makes tinkering fun. Common hobbies like cooking and playing musical instruments also fits this pattern. In fact, I believe the lack of such feedback loops (mostly by being unable to access or afford equipment) personally kept me from becoming interested in biology, medicine, and similar subjects until when I was much older (compared to subjects like math and programming). I’m wondering how much my experience generalizes.
Requires knowledge of many fields: Solving these illnesses probably requires knowledge of biochemistry, immunology, neuroscience, medicine, etc. This makes it less accessible compared to other hobbies. I don’t think this is a huge barrier though.
Are there other reasons? I’m interested in both speculation about why other people aren’t interested, as well as personal reports of why you personally aren’t interested enough to be working on solving mysterious chronic illnesses.
If the lack of feedback loop is the main reason, I am wondering if there are ways to create such a feedback loop. For example, maybe chronically ill people can team up with healthy people to decide on what sort of information to log and which treatments to try. Chronically ill people have access to lab results and sensory data that healthy people don’t, and healthy people have the brainpower that chronically ill people don’t, so by teaming up, both sides can make more progress.
It also occurs to me that maybe there is an outreach problem, in that people think medical professionals have this problem covered, and so there isn’t much to do. If so, that’s very sad because (1) most doctors don’t have the sort of curiosity, mental inclinations, and training that would make them good at solving scientific mysteries (in fact, even most scientists don’t receive this kind of training; this is why I’ve used the term “nerds” in the title of the question, to hint at wanting people with this property), and (2) for whatever crazy reason, doctors basically don’t care about mysterious chronic illnesses and will often deny their existence and insist it’s “just anxiety” or “in the patient’s head” (I’ve personally been told this on a few occasions during doctor appointments), partly because their training and operating protocols are geared toward treating acute conditions and particular chronic conditions (such as cancer); (3) for whatever other crazy reason, the main group of doctors who do care about complex/mysterious cases (“functional medicine doctors”) are also often the ones that are into stuff like homeopathy, probably because their main distinguishing trait is their open-mindedness, which cuts both ways. (Obviously, there are some exceptions for all three points here.)
So in closing I’d like to say, on behalf of people with mysterious chronic illnesses: We need more people like you. Please tell us how to make the problem more interesting so we can harness your brains for greater health and glory.
Acknowledgments: Thanks to Vipul Naik for being part of an early conversation that later turned into this post, and for feedback on a draft of the post. This does not mean he agrees with anything in the post.
Due to diagnostic ambiguity, a lot of the solutions don’t generalize, which is anathema to the nerdy interest tick in my experience.
Can you elaborate? It seems to me that a lot of nerdy interests also “don’t generalize” in the sense that different problems are quite different from one another (a puzzle game would be boring if all the puzzles had similar solutions, and part of the game designer’s job is to make puzzles feel impossible in different ways; a mathematical theorem that was unnecessarily particular would be eaten up by a more general theorem, so major theorems in math necessarily require unique insights, so you can’t prove most theorems by using the same old tricks; etc.). So this does not seem to be a distinguishing property to me.
Puzzle games and real math are pretty non central examples of nerdy interests in my ontology. I think of nerdy interests as fake compression, they provide a simpler world with a working memory number of variables to optimize instead of the mess of the real world. Results can be knowably optimal etc.
Hmm, but don’t puzzle games and math fit those criteria pretty well?(I guess if you’re really trying hard at either there’s more legitimate contact with reality?) What would you consider a central example of a nerdy interest?
Imaginal worlds, escapism. Video games, tabletop gaming, fantasy movies and books, comics and anime, collecting things, model building or mechanically intricate things.
Makes sense. But I think the OP is using the term to mean something different than you(centrally math and puzzle solving)
The thing is, it’s hard to come up with ways to package the problem. I’ve tried doing small data science efforts for lesser chronic problems on myself and my wife, recording the kind of biometric indicators that were likely to correlate with our issues (e.g. food diaries vs symptoms) and it’s still almost impossible to suss out meaningful correlations unless it’s something as basic as “eating food X causes you immediate excruciating pain”. In a non laboratory setting, controlling environmental conditions is impossible. Actual rigorous datasets, if they exist at all, are mostly privacy protected. Relevant diagnostic parameters are often incredibly expensive and complex to acquire, and possibly gatekept. The knowledge aspect is almost secondary IMO (after all, in the end, lots of recommendations your doctor will give you are still little more than empirical fixes someone came up with by analysing the data, mechanistic explanations don’t go very far when dealing with biology). But even the data science, which would be doable by curious individuals, is forbidding. Even entire fields of actual, legitimate academia are swamped in this sea of noisy correlations and statistical hallucinations (looking at you, nutrition science). Add to that the risk of causing harm to people even if well meaning, and the ethical and legal implications of that, and I can see why this wouldn’t take off. SMTM’s citizen research on obesity seems the closest I can think of, and I’ve heard plenty of criticism of it and its actual rigour.
It seems to me that studying the condition of an individual person is qualitatively different than studying a cluster of mysterious conditions in general.
To study a particular person, you actually need one nearby and have a relationship with them that helps you studying them. This sort of relationship management is not what the stereotypical nerd wants to do.
When it comes to studying a cluster a cluster of mysterious conditions in general you come to topics like Chronic Lyme Disease. If you study it you see that there’s a community that believes that there’s such a thing and at the same time the mainstream establishment that doesn’t believe that Chronic Lyme Disease is a thing.
Solving a mysterious health issue that mainstream medicine doesn’t solve means advocating alternative medicine treatments. In many cases, this has more social costs than social rewards even if the treatment helps some people.
You can speed up your experiments by testing multiple variables at once https://youtu.be/5oULEuOoRd0
That depends a lot on the nature of the phenomena you are investigating. You need independent observations for multivariate testing and those are often not available if you only have one patient.
Mysterious chronic illnesses tend to be hard to fix. If controlling human physiology were as easy as controlling software-based systems, some people would be able to stay alive indefinitely.
I agree they are hard to fix, but a lot of nerdy interests tend to also be hard (and that seems to be part of the attraction). So this doesn’t seem like a differentiating factor.
They are hard to fix, but you quickly realize that they’re all one-off problems and whatever solution you come up with for one person isn’t going to work for anyone else.
If you can even find a solution.
The problems are too hard, the feedback is too weak, and the solutions never generalize. All of those are the opposite of what I’d prefer out of my problems.
Epistemic status: just speculation loosely based on my understanding of how my brain works and assuming other peoples brains work similarly.
I think the problem might be that there are too many mysterious diseases. As an analogy: I have a desire to learn a second language, but often when I start trying to learn a language I will be distracted by other languages I could learn, I’ll study one language for a few months and then abandon it for a different language, and then abandon that language for another, until I look back and barely remember any words from any of them, and I’ll think if only I had some reason to commit to a specific language, like if I had a partner who spoke a second language, then I would for sure be able to focus my effort to learning that specific one.
In the same way I’ve researched medical topics before, but there is a lot of medicine to learn and I have no reason to focus my effort on one specific mysterious disease. When me or my family or friends get sick I will sometimes spend some time learning about the disease or the medicine that they got, but quickly move on to other things that interest me of which there are many. If me or someone very close to me got sick with a chronic mysterious disease that would probably result in me getting fascinated by it to a similar degree as you are now, but currently I am not in that situation. other than someone I care about getting sick I am struggling to think of another reason I would force myself to focus on one specific issue, perhaps if the government or my job assigned me a specific illness but I am not a doctor so I don’t see why they would do that.
One roadblock that I see relates to objective measures of treatment efficacy—in other works we have no accessible way to capture ‘energy system failure’.
If you have MECFS you are overwhelmingly aware that how you feel subjectively from one day to the next has very little bearing on how sick you actually are (this seems to hold up to a point, once ‘severe’ hits you know you very sick). Add to this that many of the treatment protocols that should help somewhat often make people feel horrible, even for extended periods of time. 99% of people in trials would stop taking a helpful treatment soon after starting if they felt they were getting worse, but feeling worse is actually the sign the treatment is working as predicted. Patients cannot trust their own experience and they also cannot assess if something is helping.
Wearables and metrics like HRV can be helpful (over time) but we desperately need testing (something extremely simple like urine test strips) that people can use daily or weekly to gauge where they are at.
Early on in the disease course most people find that it takes months or even years of constantly pushing and doing too much before they finally crash to severe. One of the primary needs as far as I am concerned is a way to capture this energy system failure.
To get the nerds we need to have easily accessible—DAY to DAY—home-based objective data collection.