[Question] How to get nerds fascinated about mysterious chronic illness research?

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.