How to get nerds fascinated about mysterious chronic illness research?
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2814
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.
2
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.
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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?
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Imaginal worlds, escapism. Video games, tabletop gaming, fantasy movies and books, comics and anime, collecting things, model building or mechanically intricate things.
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Makes sense. But I think the OP is using the term to mean something different than you(centrally math and puzzle solving)
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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.
81
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.
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.
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.
2You can speed up your experiments by testing multiple variables at once https://youtu.be/5oULEuOoRd0
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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.
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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.
6
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.
40
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.
10
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.
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.
Man, I didn't know about this and am really sorry to hear about that. I have had two partners who also have been dealing with kind of messy chronic illness-adjacent things and so have a lot of sympathy for this (and went through a few months of probbly-mold-poisoning last year which shared a lot of structure with the cases of mysterious chronic illness that I've seen).
1I'm not quite sure what you're asking here. Do you want people interested in solving your particular problem? Solving the class of problems you're in (probably not option)? Solving mysterious illnesses in general?
Are you wondering why there's no one to hire? No one will help you for free? Not enough research money is spent on the topic?
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 wonder if, just like young people not thinking clearly about mortality, it's just something healthy people don't tend to think about, partly because it's depressing.
(I'm also someone who got a lot more interested in this kind of thing after my own health issues)
Edit: just this single medicine might be better than the below three combined. Bet offer now stands for this single medicine or the below three instead.
I offer to bet my $300 against your $600 that taking these three dewormers cures your condition
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".
Looked for sold online and broad-spectrum. Basically just google.com/search?q=broad+spectrum+dewormer+human . I ate the chocolate one myself. Idk why different parasites would be sensitive to different chemicals or anything. Didn't check user reports at all.
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!
Were you gardening or anything when you first got sick?
I was not. I've stayed indoors most of my adult life, so I think I'm at lower risk for worms. Hard to say where I could have gotten worms from (assuming it is worms).
Yeah hurts the chances then. Could get something from an unwashed piece of fruit. I think the ones that do spread person-to-person do so via eggs that make your butt itch; the eggs get on the bedsheets then Bob eats an apple in the morning. I'm still like 50/50 on the parasite hypothesis
Having been suffering myself from ME/CFS (and/or possibly long COVID) since early 2020 (after I fell ill with an illness very similar to COVID-19 at the end of 2019) I understand and feel your frustration, pain and suffering having to face a very long haul chronic debilitating complex disease with complex/unknow/obscure etiology/mechanisms and no current proven cure and nothing much effective to treat the symptoms neither.
At least for long COVID and also ME/CFS (thanks to long COVID which has many similarities with ME/CFS) there are quite a few labs/researchers/nerds/... who are interested in trying to advance the science around these illnesses. 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 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?
With regard to addressing the etiology of complex chronic illnesses, specially the ones involving dysfunctions of the immune system, of the autonomic system, of the physiological energy generation/consumption mechanisms, of metabolism, etc... I wish the human body could be put into "profiling mode" (like for software) where you could trace/record in details all the related/relevant biochemical processes going on and then have tools that take that trace as input and provide as output an analysis of the processes going wrong and the root cause(s) of it and the possible remedies for it but it is of course still largely science fiction at this point in time!
So unfortunately, as yourself and some commenters in this thread have said, you have to find or determine by yourself the protocol(s)/approach(es) that you think are best suited to you and what you can do (depending on your own cognitive/physical/relational/financial/... resources).
For ME/CFS, some interesting comprehensive simple-enough-for-the-layman-to-understand approach I have come across so far is this one:
https://www.drmyhill.co.uk/wiki/Overview_of_CFS/ME_protocol
I have absolutely no affiliation and never made contact with the practician who authored that approach and do not endorse it or take any responsibility if you follow it, etc... but simply noted (in my very humble opinion) that this approach as a potentially interesting, comprehensive, systematic, systemic, rational, practical, ... example of approach at least from a patient point of view in the current state of science related to ME/CFS (with the option to zoom-in / research further into any level of details at each step of this approach).
I guess this type of systematic/rational/... approach can provide some inspiration for some other complex chronic illnesses at least from a patient point of view. One of the main point of this approach is I think basically to try to list and address each and every possible cause of the illness by priority order of importance/likelihood/....
Note: sorry if my comment looks very "drafty", as I am invoIved in the same kind of problems as the OP I wanted to quickly give my own very little 2c about them, I might slightly edit some bits of my comment later on to iron it out if/where necessary and if I have the time & energy.
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 intuition-guided trial and error might work better. That's been my experience dealing with chronic-illness type stuff.
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.
What methods do you use to study this?
Like I guess the main method one can use is to start with the symptoms and track backwards step by step along the known causes of such symptoms to identify causes that are out of whack, until one gets up to some major cause that's treatable?
Alternatively, one could just throw stuff at the wall and see if it sticks, but it seems like it would be too noisy to work.
The tricky part is I'd think it's very hard to enumerate the causes of the symptoms? What does it look like in practice?
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've heard a lot of good things about fasting, but unfortunately I am pretty underweight (104 pounds, 5 feet 6.5 inches) and unable to gain any weight (despite trying quite hard). And when I am awake if I don't eat for 1-2 hours I start to feel extremely weak. So those two things have kept me from thinking seriously about trying fasting. Do you have any resources or thoughts on fasting for underweight/wasting people?
Jesus have you always been underweight? If it's new then I would bet you have like a tapeworm. If you've always been underweight then I would bet fasting is not worth the risk.
I've always been underweight. The heaviest I got was about 115 pounds during freshman year of college. A bunch of the men in my family were quite skinny (though not as much as me) when they were younger, so I suspect it's at least partly genetic.
1I 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.
Well if you've always been supplementing it then try not supplementing it!
But I had some weird food issues for years (eg seizures after eating garlic) that are mostly gone with 250mcg daily vit D. I started taking K with it about a year ago because people say D alone can have long term side effects. I don't know why a giant dose is different from a regular dose... I also had normal levels IIRC. Maybe a giant dose gets stuff deeper into certain tissues or something ¿
Zinc carnosine is supposed to increase mucus production. My understanding is that mucus is the source of all good things health-wise (unless it's in your lungs lol). My mom and I both took it for food vs brain stuff and it seemed to help us both a bit (we were in decent starting condition so a big effect would be hard to see).
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've heard of this, and may want to try it eventually. I'm starting out with things like LDN first though.
1Medicine has solved this problem for the majority of mystery illnesses that are psychosomatic. But it's a difficult cure because it requires the sick person's cooperation. And people don't often talk about this because of the misconception that considering psychosomatic illness is insulting to the sick person.
There is probably a niche for a prominent person or doctor to explain psychosomatic illness and work on getting people to consider that possibility and accept treatment. But that is a task suited more to influencers and those with a lot of tact than for nerds.
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 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? All the really weird symptoms explained by worm poo and worm bites (poking holes) in the GI tract? How do you know your infection from years ago was viral?
I think they are easy to kill with dewormers. If you have some unusual fungus or bacteria or virus (or eukaryote or archaea) then it could be very hard to kill.
I think taking dewormers might be easier than getting a proper colonoscopy or test. If it is a parasite then you'll see it in the toilet. (And you said you're pretty underweight so fasting seems off the table.) I have not researched side effects and risks of dewormers.
If the underlying thing is totally autoimmune then getting rid of a parasite could actually make it worse. Easy to get a new parasite though if you wanted to go back lol
Here is chatgpt trying to make score cards for various causes based on the stuff you listed in your reddit posts.
https://chatgpt.com/share/66fcba19-cfbf-4e3d-86e7-8f40c536d624
Anyway I would place like 60% on GI tract pathogen, 15% on pathogen elsewhere, 10% on poisoning, 10% on autoimmune without pathogen or poison, and 5% on all other causes. Just guessing obviously.
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.
False negative rate is high apparently.
Seems like 5-10% false negative for when they already know exactly what you have? And a 30% number is randomly quoted online... I guess it totally depends on what someone has, how much they poop, etc
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC266208/?page=2
Some reports of people just taking dewormers despite negative tests and having good results. Example:
https://old.reddit.com/r/SIBO/comments/euuvqw/psa_your_sibo_could_be_parasites_even_if_you/
Idk how broad-spectrum/effective dewormers typically are. Apparently this one killed a bunch of random stuff but some species can come back after:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7983463/
Yeah i would bet 40% on a worm (ie 67% of my 60% on GI pathogen)
weird stuff started happening to me like extreme sensitivity to caffeine
Only explanation for this (and the salt sensitivity etc) IMO is a hole/thinning in gut lining. Which is moderately likely (30%?) with nonworm gut pathogen but very likely (75%?) with a worm.
Thank you, this is good to know. I reached out to one of my doctors to see what they think of this idea. My own feeling is that 40% on a worm is too high. My eosinophils count is normal (and I know sometimes that can be normal even with a parasite), the viral illness seems like a sufficient explanation of kick-starting my chronic symptoms, I tested negative on the stool test, and I already know I have gut problems (and those gut problems seem to be explained by SIBO/leaky gut). Basically, everything I see seems to be explained well by stuff that I already know is going on, and I don't see any clear evidence of parasites. I would still put maybe 3% on it though.
My current distribution of root cause now looks something like: 35% on autoimmune/pre-autoimmune (e.g. Sjogren's syndrome), 25% on MCAS, 10% on dysautonomia/POTS, 5% on latent virus/viral reactivation, 5% on SIBO/impaired MMC, 3% on some kind of parasite, 17% other causes.
Only explanation for this (and the salt sensitivity etc) IMO is a hole/thinning in gut lining.
Why not dysautonomia? I am newly sensitive to a lot of things, including heat, light, and sound that don't directly involve the gut.
Oh that's a lot of evidence against a worm probably. I am out of ideas. Good luck. I hope you can figure it out