How to get nerds fascinated about mysterious chronic illness research?

Sure, all of those things. I think they are all related parts of what I've been wondering about, and are not as distinct as maybe you think. If I were to try to compress my main confusion, it's something like: I see nerdy people spontaneously doing certain activities for fun, like doing math, programming, making and solving puzzle games, writing long blog posts about COVID origins, or whatever; why is it that almost no one spontaneously decides to try to solve mysterious chronic illnesses? Does thinking about mysterious chronic illnesses have some kind of barrier that repels people, and if so, are there ways to remove that barrier?

I'd be curious to hear about how you decided which on dewormers I should take. Maybe the answer is just "a bunch of reading on random internet posts and papers".

If you do this I would recommend taking 3 days between each one, then waiting 2-3 weeks for eggs to hatch, then taking each again. Were you gardening or anything when you first got sick?

Apparently in the US we are too ashamed to say we have "worms" or "parasites", so instead we say we have "helminths". Using this keyword makes google work. This article estimates at least 5 million people (possibly far more) in the US have one of 6 considered parasites. Other parasites may also be around. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7847297/

Note the weird symptoms. Blurry vision, headache, respiratory illness, blindness, impaired cognition, fever... Not just IBS and anemia!

I guess one of the first things to do to create/market/... an interest from labs/researchers/nerds/... would be to find other people suffering from the same illness and create/coin a name for that illness and create some association/website/gatherings/... to communicate about it like it is done for most other illnesses?

Funny that you mention this, because I was just musing about this the other day over on my personal website. Unfortunately I wasn't able to come up with a very good name...

It must be really dreadful as it seems to be the case for you, to have a mysterious chronic illness without even a specific name attached to it (from what I understand), only a set of symptoms which (similarly to ME/CFS) can have many different possible root causes/factors.

I really appreciate you saying this!

I've looked at some of Sarah Myhill's work before, and yeah, I think it's a good example of someone seriously thinking about how to solve an illness. I wish I knew how to get more people like her to study different kinds of illnesses too.

I've been trying. You can see my write-ups about breathing, swallowing, weird thirst/electrolyte(?) thing, and paradoxical temporary improvements following certain events. I also have a draft of a post detailing all of my history, labs, symptoms, and everything I've ever tried, but it's a huge amount work and I don't have much hope of people even reading it (hence this question, to see what I can do to make it more interesting), so I've only been able to make progress on it very slowly.

I wonder if "brains" of the sort that are useful for math and programming are neccessarily all that helpful here.

I think I used to implicitly believe this too. I gravitate much more to math/programming than biology, and had a really hard time getting myself interested in biology/health stuff. But having been forced to learn more biology/health stuff, I seem to be able to ask questions that I don't see other people asking, and thinking thoughts that not many others are thinking, so now I think the kinds of thinking used in math/programming generalize and would be quite helpful in solving mysterious chronic illnesses.

Separately, I used to mostly agree with the Elizabeth post you linked, but the biggest "win" I've had so far with my own chronic illness has had the opposite lesson, where careful thinking and learning allowed me to improve my breathing problem. Of course, I still try a bunch of random things based on intuition. But I have a sense that having a good mechanistic model of the underlying physiology will lead to the biggest cures.

Here's one example. Jeff Wood had been suffering from ME/CFS for a while, and found that his head started sinking one day, and a lot of his symptoms would get worse depending on the position of his head/neck. This led to his diagnosis of CCI/AAI and he was able to get the right surgeries and is now in remission. Of course, most of us are not as lucky as he is in having something that so dramatically and immediately changes symptoms. But I think it's one way to solve such medical mysteries, and is basically what you say about tracking backwards from symptoms to causes.

Here's another example, although this one hasn't led to any actual cures yet. Robert Phair used his knowledge of biochemistry pathways to come up with a hypothesis of how the citric acid cycle gets shunted, which has the immediate effect of lowering ATP production but also some other crazy downstream effects like neurotransmitters being stolen to fuel an alternative cyclic reactions (which possibly is what one type of brainfog is caused by). So this approach is more top-down: start with a bunch of "textbook" knowledge and theory, try to come up with a hypothesis of how that could lead to problems, and how those problems might explain symptoms.

I'm sure there are many other approaches.

Last random suggestion for you (not that you were requesting these): prepare ahead and do one very long fast (ideally like more than 3 days). Heard lots of success stories for totally weird conditions with this.

I have not. I've been supplementing vitamin D my whole adult life, and the initial blood test showed a level of 86.6ng/mL which one of my doctors said was higher than optimal, so I lowered the frequency of supplementation and my follow-up blood test showed a level of 54.5ng/mL. Any reason I should try megadosing it even if I have adequate levels in my blood?

I've heard of zinc carnosine but haven't tried it yet. I tried supplementing with zinc gluconate at one point but it seemed to be aggravating my hunger attack symptom so I stopped.

Oh i read the reddit post you linked in another comment suggesting it may be auto immune. If you're not worried about the pathogen itself then you can just get hookworm to permanently suppress your immune system. You have to take iron the rest of your life to keep your red blood cell count high i think. It is supposed to be extremely effective.

I wasted the first couple years of my illness thinking my condition was psychosomatic or DP/DR, doing things like therapy, anxiety techniques, introspection/journaling, gradual exposure, and so forth. I still sometimes try some psychosomatic treatments anyway (most recently, I was trying out John Sarno/Howard Schubiner-style mind body syndrome stuff, after reading Steve Byrnes's post [LW · GW] and having it recommended to me). None of it really helped. I now think a lot of what people think of as psychosomatic conditions are instead somatopsychic conditions (i.e. a physical condition that results in mental symptoms). In my case, it helps that some of my symptoms clearly cannot be produced by anxiety/a psychosomatic condition (e.g. peeling and burning lips and rapid heart rate that returns to normal by lying down).

Perhaps an intestinal parasite like a tapeworm?

I did get the GI Effects stool test done (in December 2022, well after I'd already been ill), which showed no presence of parasites. Any reason to think a stool test like this wouldn't detect the parasites?

How do you know your infection from years ago was viral?

My symptoms during the acute infection were a sore throat, fever, large quantities of mucus and clogged nose (requiring constantly blowing my nose), and a cough (both dry and wet cough; mostly in the evenings). It felt like a cold or flu, just stronger and longer lasting (10 days for most symptoms to clear, then 5 more days after that until I felt basically normal, and then a few weeks later weird stuff started happening to me like extreme sensitivity to caffeine, and it has just kept going on for 5 years now).

GI tract pathogen

I do know I have SIBO and gut dysbiosis (from breath/stool test), but the usual treatments for these seem to have made me worse off, so my current guess is that it's not the root problem.