When my first symptoms appeared, I initially thought it was just aging, despite being a healthy 28-year-old man who enjoyed exercise and maintained a proper diet. I noticed health issues arising even though I took better care of my exercise, diet, and sleep compared to my friends.
Hospitals provide fragmented information across departments, which can extend the diagnosis period for rare conditions.
I believe medical services can be delivered through personal medical data + medical domain knowledge + intelligence (excluding physical intervention). AI can process more data than doctors have time to review, contains more knowledge than one person can study, and its intelligence will continue to improve.
This gives me hope, and I want to help others who could benefit from this hope.
The key part of that statement is "continue to improve" we have no way of knowing where we are on the sigmoid curve of improvement.
But right now. Today. Tools like this that spit out "you might have an autoimmune disease" aren't helping. Until they improve dramatically, the most likely outcome is that doctors get even more overwhelmed with people who think they have an auto immune disorder, but don't.
I'm much more medically knowledgeable than the average person. I'm reasonably smart, and interested in the subject. And then I married a doctor.
But even given all of those things, I'm very bad a diagnosing myself. I once swore that I had Giardia. I read dozens of papers and case studies. A close family member of mine was also having some similar GI symptoms at the time, and I even calculated the probability that our symptoms were independent.
After that was ruled out from testing and I kept having stomach pain, I did more research. I was pretty sure I had stomach cancer.
Eventually I got scoped--gastritis. Took a PPI for a little bit and it cleared right up. Gastritis wasn't even something that I had considered. It showed up in my search results, but because it wasn't a serious problem, I didn't focus on it.
Multiple times she was turned down for breast cancer screenings, she was told that she was too young (33 at the time). It was not until she had requested that the doctor write a note of their denial, along with reasoning, that they finally gave her some screenings.
It was stage 2(3?), it had affected several lymph-nodes, but she was lucky that she persisted and did not just say “oh ya it’s fatigue”. When I ask her about how she knew, it’s always the same response, that it was just a feeling, that she knew something was not normal.
There are costs to testing, financial and otherwise. For example you take someones family history, and other risk factors into account. There is a 1/100,000 chance that they have cancer. Then you add in the symptoms, fatigue, and minor aches and pains. That brings it to a 1/50,00 chance.
We don't have the money, technicians, or machines to run an MRI on everyone who shows up to the doctor with a problem that has a 1/50,000 chance of being cancer.
Then for many tests, with such a low prior probability, a positive test has a higher chance of being a false positive. So now you patients with massive anxiety out over a positive that has high chance of being a false positive. And you need to send them or further more invasive anymore expensive tests, that have real risks of harm.
A guy launched a car into space; I think we have all this stuff but we — as a society — just don’t find the business case for “poor people being alive” very compelling.
You are incorrectly calculating the “value of the appointment” from precisely the wrong viewpoint. Remember that healthcare is about the patient’s health, not the bill.
It's also just so wildly irrelevant to the topic at hand
Of course, to the doctor's defense, patients are not an easy population to work with, "Why can't I eat candy and cake 3 meals day and my diabetes is getting worse?"
"I HAVE cancer. I HAVE this autoimmune condition. I GOT a cold."
So people are in search of a label and the "thing" to get rid or fight, but imagine if all technology problems were labeled similarly. Rendering-itis. Memory-itis. PCI-Bus-itis. Imagine someone coming to a person going, "I think I have keyboard-itis, because when I type a key into the keyboard, it takes a couple seconds for the character to show up on the screen." When in reality, as the engineer, your intuition is that there's something amiss in the auto-complete microservice. Perhaps that service needs to be scaled up or something else is DOS'ing the service, Perhaps the autocomplete service is running across the country instead of the same datacenter, so you know which tests to run to isolate and solve the source of the problem. Medicine is basically that now.
Medicine has developed to the point where they have several hammers where if bloodwork == X || symptoms == Y, then A or B or C drug/procedure. So doctors are mostly the level 1 engineer after the level 1 tech support rep on a script.
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Most medicine is merely a collections of latin labels, and unless the conditions map to well-known treatments, most doctors are in the dark. You were lucky that you responded to PPIs.
Gastritis is "inflammation of the GI lining" and the use of a PPI, is similar to a common second-line option like "reset the software settings" after the first suggestion of "reboot your computer." They scoped you, because they had no clue what was up. Scoping is basically like lighting up the debugger. They go in with a camera, and basically found nothing but inflammation, thus came the PPIs. They were mostly ruling out cancer or growths or other weird things like outside items. (ie ate a non-digestible item).
Basically, doctors are relying on pharmaceuticals to help out for a couple days/weeks, while the body addresses things on their own such that they don't become necessary anymore. That's probably most medicine. As most pharmaceuticals are symptom management, doctors really only have tools to help someone manage symptoms or alleviate the pain. They are just practiced in that troubleshooting process, the way tech folks get deep into the stack of the architecture of computing, networks, etc and can troubleshoot issues in the tech stack.
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The way that there's only a handful of the most brilliant engineers who deeply understand the stack top to bottom in such a way that they can thread their way to "that's a problem in this specific subsystem and the latest change now makes the datastructures exceed the L3 cache size of that node and that's causing an additional 10 millis degradation." There's really only a handful of doctors who are intimate enough with the all the subsystems of the body to be able to drill into what's going on with a person, otherwise most operate on rules and mentally null pointer when they run into something that doesn't fit into their flow chart.
Outside of very specific genetic conditions, incredible amounts of sickness out there could be alleviated by supporting the biochemistry (limiting reagents) of the body, so its processes can keep it in tip-top shape.
I've met doctors that are passionate, but are hamstrung by "the process". The hospital has policies, the insurance company has policies, local health departmen thas policies, whatever it is. I hate that "some process" needs to be in place to keep things in check, lest we end up with patients abusing things, or doctors abusing things (SURGERY ALL THE THINGS, for example).
I think it's "the process" we have lost trust in. Individual people really do want to do good things for each other. But "the process" sadly has an awful lot of inertia, and doesn't make it easy to change.
There is a legitimate issue with concentrated ownership of provider organizations in some regions. More antitrust enforcement is needed to protect consumers but unfortunately that seems unlikely.
https://www.theatlantic.com/ideas/archive/2023/05/private-eq...
https://www.ineteconomics.org/perspectives/blog/private-equi...
"What if you didn't generate the heat in the first place?"
Personally, I have a hypothesis that there are systemic areas we need to address in our food supply to lower healthcare demand. This will sound kooky, but if we can get more sulfur and trace minerals into the food supply, we could improve the general well-being of massive amounts of the population. We really need to look at doing more research into additionally fortifying our foods.
Here's a nature article on the reduction of sulfur from the food supply: https://www.nature.com/articles/s43247-021-00172-0
NPK farming has ensured that the food supply doesn't have a rich set of additional minerals outside of (N)itrogen, (P)hosphorous and (K)potassium.
Then when looking at sulfur-containing molecules, the research on them tends to herald them as miracle-health molecules: MSM Taurine, B1, NAC. All bring sulfur into the body.
Then there's companies like Buoy drops that offer 87 different trace minerals and folks are swearing by the effects of them. Asian countries consume things like seaweed and get trace minerals like this from the the sea water, but a the standard american diet is really lacking in a lot of additional nutrition that would be productive to health.
https://peterattiamd.com/outlive/
As for the food supply, I have no doubt that many people are impacted by subclinical micronutrient deficiencies, whether it's sulphur or zinc or D3 or something else. But the evidence indicates that's less important than excess macronutrients for most people.
I wonder though if with the advent of GLP1 drugs, if obesity may already be a solved problem, but merely a matter of time?
I imagine, as with anything, perfect doesn't need to be the enemy of good enough. A huge multifaceted issue like obesity could be addressed from many angles.
Japan has an obesity rate of 4%. By law they require every school to employ a professional nutritionist, which requires 3 years of additional training on top of their education degrees. In a particular example of 1000 kids, not a single child is overweight. Every nutritionist is required to design the school's food curriculum such that all meals are made from fresh foods and to be balanced according to all the food groups, and they forbid even the use of processed pastes. All meals are made from fresh foods on-site.
Then the kids are then taught how to eat well and to fully cover their nutritional needs from 6-18. This would be the non-ozempic way to influence a nation to eat well.
If you're paying out of pocket, you have the right to demand as many tests and as many treatments as you can afford. If you're relying on an insurer to foot the bill, then that insurer has two choices - refuse to pay for some treatments, or watch costs (and premiums) trend towards infinity.
Do you have any source to back this up? I very much trust my doctors to provide a treatment correct for me versus googling my way to horse de-wormer or similar
Bully didn't suddenly turn into a nice person who wants to save the world, that never happens.
More likely, he's still doing everything he can to maximize power and profits, without any regard whatsoever for other people.
Africa is where all the resources are, we just have to get rid of all the pesky people standing in the way.
Anecdotally, a colleague had a patient bring him a printed PubMed article about something. The patient demanded the treatment in that PubMed article.
I looked at the article, and it was from a trash journal, with huge amounts of red flags (eg: C.I was all over the place, self-reporting, no blood work. Diagnosis was suspect from the start, and the authors had a financial interest in the treatment)
The patient didn't want to her any.
a) The knowledge is democratized on the internet (albeit often without proper context, and with somewhat limited accuracy)
b) You just care a lot more about your own, or a loved one's health/life and are willing to put a lot more effort than a doctor can or an insurance company is willing to pay for.
You may not have a medical degree, but if you're willing to put in 40 hours doing research and your condition is even somewhat unusual, you can probably exceed the knowledge of your doctor about your specific condition.
>> you can probably exceed the knowledge of your doctor about your specific condition.
It depends on the doctor. That's why in the US patients first see a general practitioner, then are referred to a specialist. I've met some less knowledgeable doctors for my condition, but I don't discredit them for it. It's a difficult profession.
Plus "doing research on your own" is not a bad idea, but if one deep dives and starts believing ivermectin cures everything, well, I'd say they did poor research, and poor research can be worse than listening to a doctor.
When I need my car fixed, I don't go to the local psychic or consult Fox News. I go to a mechanic.
Such a tired take. What we do know is we are not on the flattening part and literally every company working on these technologies is saying there is no end in sight.
Literally every company making money selling Foobars is saying there's no end in sight selling Foobars?
WebMD has been like this well before current iterations of LLMs. Pretty much any symptom you looked up would very meme-like say "it could be cancer". Only, it wasn't trying to be a meme. I always saw it more of a CYA on webMD's part though, without trying to sound authoritative like LLMs do.
https://gutenberg.org/files/308/308-h/308-h.htm
Published 1889
Food, bitter beer, exercise, early bedtimes and "stop stuffing your head with things you don't understand".
> I followed the directions, with the happy result—speaking for myself—that my life was preserved, and is still going on.
I read the book as part of my English - II in school, but no part stuck to me as much as the Liver cure for children.
The medical shills are working hard on this thread.
The most dramatic was in 2009. My wife was admitted to emergency at 22 weeks pregnant with severe cramping, nausea, and severe IBS like symptoms. She couldn't keep food down, leading to daily stomach pumping and eventually IV nutrition.
The episodes started every few days but grew more intense and frequent. After 8 days, the first doctor seemed lost. When I asked about a second opinion, he lectured me that it was "his call to make, not mine." That killed any trust - I asked him not to return.
The next doctor, an eccentric but brilliant GI specialist, ordered new tests. I obsessively googled every result (partly to cope, partly to help). When he suggested a motility drug, my research found a case of spontaneous abortion linked to it. We declined.
Three weeks in, I noticed something odd in her lab work - different blood counts from different locations. More late-night googling led me to placental percreta, where the placenta grows through the uterus and attaches to other organs. Several ultrasounds proved inconclusive.
With daily episodes now and my wife deteriorating, we insisted on an emergency C-section despite warnings about our baby's lung development. During the procedure, even with an epidural, she went into extreme pain. Her eyes rolled back, the surgical team's demeanor changed instantly, and I was told to leave the OR.
Waiting outside for who knows how long. I knew the risks. Some noise down the hallway, a few nurses called me over. They were wheeling a humidicrib down the hall to the ICU. Little champs whole leg was no longer than my pinky finger. They took him into the ICU and sent me to the hospital room to wait.
The OB arrived an hour or so later and explained she was alive and they had to remove something. He took out a photo and and showed how the placenta had indeed broken through her uterus and attached to the intestine. He then pointed to a particular point and explained how it would have ruptured at any moment. The decision to push for the C-section likely saved both lives. Our son, never developed lung issues. Lots of luck.
This experience showed me how even amazing doctors, overwhelmed with cases and data, can miss crucial connections. In 2009, they didn't have the tools to correlate data the way I could with google search-fu.
AI diagnosis tools will save lives - they can make these connections faster and more reliably than either doctors or desperate husbands with search engines. And it will just improve over time.
I don't have the ins and outs of your case. I'm a student, not an obsterician, or neonatologist. That said, I do know delivering a 25 weeker is insanely risky even if perfect care is provided, for both his immediate outcomes and avoiding long-term disability. (80% of babies born before 26w have some form of disability e.g low IQ, blindness, etc [1]).
No sane obstetrician is going to deliver based on a family opinion like that - it is a true last resort. If you were wrong, or less lucky, as horrible as it is to say, your son would not be with us and the surgeon would be out of a job with the "what if" on their conscious (which trust me, all obstericians have anyway).
When your son needed to be delivered, it sounded like he was delivered. Frankly no neonatal respiratory distress at 22 weeks sounds insanely lucky to me; normally before 35 weeks it's a concern.
I can't say if this was a failure of the medical professionals in charge of your care or not, but from the information you've given us it doesn't sound like it. Tens, maybe hundreds of patients will have presented identically to your partner with a far less severe diagnosis. Getting their babies out early could have left them permanently disabled or dead, on the offchance it was percreta/accreta/increta: especially in the absence of definitive imaging, which they did attempt to perform. Medicine is not perfect by a long shot. Managing uncertainty is one of the many skills of senior doctors.
Medicine isn't as simple as a lot of people in this thread think it to be.
DOI: Medical Student
[1]: https://www.tommys.org/pregnancy-information/premature-birth...
In our cases, her condition was deteriorating at a frightening rate. She could barely speak. Under such stress one must also consider the possibility her body giving up and aborting the pregnancy. Doctors had put cameras up and down and ultra sound etc. They were trying to keep her going as long as possible to give baby the best chance. I definitely would not advocate for anyone to make rash decisions in such delicate situations, and of course, my post omitted myriad details for brevity.
The cause was later determined to be the result of a D&C for retained placenta that was performed following the birth of our first child a few years earlier.
Medical training and experience can reduce the impact, but not overcome it. It is a reason why someone can't entirely outsource their heath to the medical system, and something that I think people miss when they set medical expectations.
From the perspective of the medical system, it is a numbers game, where the optimal number of deaths is non-zero. More time and effort spent in one area means less in another. Saving one life might cost two others.
Because of this, I think it is most useful to discuss ways to increase medical efficiency. Better data transfer, better collation, better processes. AI/big data review has a place in this, but we should be aware of it's limitations, particularly on the data it doesn't capture.
Do you know how many times I've got prescribed a drug that would harm me more than do good? Do you know how many times I've got prescribed an antibiotic I'm allergic to, even after telling them I'm allergic to it, even after three different people wrote that down in many different places? Most modern doctors are criminals and I will never be ashamed to say that, because it's true.
Please keep doing what you're doing and ignore the naysayers, they're usually on some pharma's company payroll, sad.
You probably won't believe it, but that's not a thing. My wife is a doctor and I can tell you exactly how she gets paid. The only real misaligned incentive I've been able to find is that she could pad her paycheck by spending more ordering tests.
But she her pet peeve is doctors ordering tests that aren't going to change the course of treatment, so she's definitely not going to do that.
But it could be something I eat, definitely, what I have feels like a sudden allergy to something that I haven't been able to single out from the environment.
Anecdotally, I have heard that hypochondria is a problem in this space. So I would want to know the ratio of incorrect self-diagnosis to confirmed diagnosis, and what percentage of the system's totally human and technical resources are spent recognizing false positives.
I think that this sort of effort is probably a positive one. Patients should have access to their records are are more likely to be able to centralize data for analysis by a 3rd party - with all the attendant risks - more effectively than any other party. Secure systems without conflicts of interest - ie, insurance companies - to aid multidisciplinary diagnoses over longer time frames is a good thing.
But the risk of AI hallucinations and doctor/diagnosis shopping are real. This post was light on details on the diagnosis, how many rheumatologists they saw to get it, what tests confirmed it, and if the treatment has been effective in a way that cannot be skewed (https://pubmed.ncbi.nlm.nih.gov/30139289/)
It's like how the tech world did not notice or address "the website is slow" in the 90s until folks started writing about how the 95th, 98th, 99th, 99.9th percentile times affected user experience. Once we could link 95th percentile page latency to revenue/profit, all of a sudden, investing in performance became a priority.
I'm not sure that we have managed to link and make a case of linking GDP (or some other metric) to overall health of the population at the fringes.
She had five knee surgeries, starting at age 20, to address instability and knee pain that were not caused by any injury (nor has she ever been overweight), just standing and walking like an average person. She has no foot arch, bruises very easily, has velvety soft skin, has an unusually high arch in the roof of her mouth, and has POTS (postural orthostatic tachycardia syndrome). These are all common hallmarks of EDS, but no doctor connected the dots until the 5th surgery. BTW, none of the surgeries helped and in fact made things worse.
A lot of men won’t have that same experience, they’ll have the experience of waiting too long to ask for help. Which in a dark ironic manner is one way of keeping things equal, one won’t be taken seriously for 5 years, the other won’t ask for help for 5 years!
It's weird how people who complain about inequality and lack of empathy towards one group, are completely incapable or unwilling to offer any of that to other people.
Not sure why you find that weird. It's a complaint about inequality towards women, and also the inequality that men face due to misguided masculinity encouraging them not to seek medical advice (and instead rely on DIY nonsense).
https://pubmed.ncbi.nlm.nih.gov/9934383/ https://info.primarycare.hms.harvard.edu/perspectives/articl... https://www.aamc.org/news/why-we-know-so-little-about-women-... https://pmc.ncbi.nlm.nih.gov/articles/PMC9657442/
It's a generalization that paints men in a negative light, which I took personally.
Anyhow, I don't usually pick fights online, I'm just particularly miserable today because my stupid health keeps hurting me for no reason.
To say something on topic - I've been talking to Claude about my health problems, and, while I still can't figure out what's wrong with me, I find it extremely helpful. It teaches me all sorts of things about health and medicine that no doctor would have the time or patience to explain, and helps out a lot, both with helpful information, and emotional support. I realize that it's kinda bleak to be receiving those things from an LLM instead of a person, but here we are.
I've been to dozens of doctors, spent a lot of money, they all were extremely unhelpful. Claude does offer a lot of advice and information that no doctor ever shared with me.
> It's a generalization that paints men in a negative light, which I took personally.
With compassion, I seriously suggest that you adopt a radically different perspective. OP did not come after you personally. Yet you say that you took it personally. How did you come to that reaction?
It helps to not look at all facts as binary. This leads to a brittle world view as one tries to reduce reality’s complexity into a bits. Social group membership is not like sets and propositional logic. If you’re applying that system of logic to the real world, you’ll derive false things. I look at it like the axioms are verifiably false by observation, thus poisoning the whole system.
I don’t usually wade into deep comment threads, but I want to help here. I see something you said that I used to struggle with myself. And I struggled until someone else helped me.
Good luck with your health.
Yeah, no good comes from taking things personally, or getting offended at things, or arguing about who's getting treated more unfairly. I'm just not my best self today.
No one wins here, but some suffer particularly egregious losses.
Doesn't this explain why doctors could take men complaints more "seriously"? If doctors are aware that men wait longer before asking for help, they'd know that there's a smaller window for a positive outcome in the event of a serious underlying medical condition.
I’ve concluded that most doctors are highly credentialed decision trees, they all start at the top of the tree no matter your history, and if they hit a dead end you’re going to told you are the problem, directly or indirectly.
I was talking to a doctor who specializes in a hard to diagnose condition. Somewhere close to 80% of his referrals are women. If you search online there are countless stories about how it takes longer for women to get diagnosed despite higher prevalence in women. The Facebook groups are full of complaints that women are at a disadvantage with this condition and it’s the doctor’s fault.
But when you look at research where the condition is discovered incidentally in people’s records, the gender difference disappears. When you randomly check for it, there is no gender disparity. It’s just random.
The difference, he said, is that many women are more persistent about getting diagnosed while many men avoid going to the doctor as long as possible. The fact that women are diagnosed at a higher rate and with longer time to diagnosis doesn’t, by itself, explain that a condition is more common in women or that doctors ignore them longer.
The author fed their medical records to the tool and then, as far as I can tell, the tool included autoimmune disease as a possible explanation.
Every comment that I saw asking for clarification received a vague response. The closest I can see is that the LLM and rheumatologist both proposed “an autoimmune condition” around a similar time, though the answer about which came first is also unclear.
The catch is that for the author to even have a rheumatologist referral to begin with, some previous combination of directors would have had to have suspected an autoimmune possibility and created some documentation to that effect. Those documents were supposedly fed into the tool, which obviously would have surfaced some of the data and possibilities that led to a rheumatologist referral.
So I agree. The way this tool is being presented as diagnosing a mystery illness by itself feels very misleading. I saw this spammed across multiple subreddits last week when the author was trying to promote it. I think maybe they set out trying to get attention on their AI side project on their GitHub profile, but got a little carried away with the angle that it was diagnosing medical mysteries.
This is a good point. Even when a diagnosis is obvious, a doctor may not say it outright and instead make a referral to a specialist because it’s not their specialty to diagnose that condition. This is a good thing because they’re not that specialist so they could be wrong about it, and if they are right, then they should make that referral anyway - and end result is the same i.e. a referral.
I think the issue is people might assume it's going to spit out your exact diagnosis 100% of the time right off the bat. That's obviously not true, but that's not what I got from reading the description of the project. It sounds more like a potential useful tool for folks to have as an additional option, and then to bring that information to a doctor to see if it pans out.
Regardless, one extremely helpful thing I got out of reading the reddit thread was the mention of an unrelated project called Fasten, which will apparently allow you to request all your medical records from many sources and then self host them:
Fasten is an open-source, self-hosted, personal/family electronic medical record aggregator, designed to integrate with 100,000's of insurances/hospitals/clinics
That's a massive "if" that the rest of your argument hinges on. You can't train your own LLM on your own data. You can fine tune it's responses to be more in line with the format or style you want. But this is usually used as a cost saving exercise when you are feeding s big system or inital prompt for lots of queries.
> there's a decent probability it could give some perspective you might not be able to get elsewhere
There's also a decent probability that it will give a wildly incorrect perspective that influences how you approach your possible disease in an unproductive way.
The author has no idea how accurate the tool is. They list no effectiveness measures. They just talk about the cool things it does (again, without accuracy) and their subjective experience with it.
It's the same pattern with LLM based tools we see so often: someone gets lucky with a useful result that no one else has done yet, they assume it will work just as well for all inputs, they build an app around it. You _have_ to measure effectiveness across a wide variety and quantity of inputs because of how inconsistent LLMs still are.
Incorrect self diagnosis is a big problem for doctors. Patients will show up convinced they have one condition and reject their doctors’ attempts to explore other explanations.
It’s a big problem right now with TikTok self diagnoses. People view a lot of TikToks and think they know better than their doctor for themselves or, worse, their kids.
The easiest example is when people decide they have a bacterial infection when they really have a common cold. They will shop around until they find a doctor who is a pushover and will prescribe antibiotics on demand. This is a big problem right now with antibiotic overprescription.
The problem with this specific post, though, is that it’s misleading. The author tries to present this tool as if it did a better job than $100K of medical testing and 5 years of doctors, but when you read the details it’s clear that the results from all of those doctors and medical testing were put into the tool.
Many of the comments here and on Reddit are missing this key point: The tool was mirroring the diagnosis from the doctors because it was given the medical records from those doctors, not because it was diagnosing the symptoms from a clean slate.
I would hope a medical professional has some baselines to compare against unlike your methodology at Geek Squad.
You could have ran benchmarks, found a machine with identical hardware, etc.
IMO, in both of these cases (medical and geek squad) there are issues with diagnostic methodology.
1. In similar cases I couldn't find a machine with identical hardware to a 5 year old computer without spending way more money than this was worth.
Even if I did the only way to get an accurate comparison would be to wipe both machine and install an OS from scratch so that they are running the same software--the customer doesn't want us to do such an invasive procedure.
Extrapolate both of those problems to actual humans and you'll see the issues here.
2. Almost all of his complaints are subjective and impossible to objectively measure. We have no way to objectively measure things like feeling fatigue and pain.
And 2. If you have chronic fatigue it’s nothing like fatigue a healthy person would experience - it’s next level. There were some thoughts to change the name to mild paralysis because sometimes you can be so fatigued that you literally cannot move.
There are objective ways to measure it. Post Exertional Malaise has a number of tests, two day max exertion test for one. There are also immuno assays which are pretty definitive. You can take plasma from someone with ME/CFS introduce healthy white blood cells, expose it to a salt water stress test and measure how quick the cells run out of energy and the results are definitive here too. Hard to fake that.
As for the subjectivity, when looking at post viral fatigue there seems to be 3 categories of people; 1 people who appear to be incapable of getting post viral fatigue, they'd die before reaching some threshold which suggests that there is a genetic aspect to susceptibility. 2 people who grew up with a progressive ME/CFS who are highly susceptive to post viral fatigue but consider the fatigue within their normal experience. 3 people who don't have ME/CFS but are at least partially susceptible, specially with Covid, and anecdotal accounts of their experience tends to have a common thread of never had experienced that level of fatigue before in their entire lives.
As for Post Exertional Malaise, again maybe this was a complaint of theirs, but they only mentioned slow recovery times.
If their symptoms are severe, they're really underselling them with their descriptions.
>That changes the equation such that spending more than the computer hardware is worth is now worthwhile.
The worthwhile point of that particular analogy is comparing invasive procedures. Doing invasive procedures like wiping the hard drive and reinstalling the OS vs non invasive testing.
You get to a point where invasive testing is only worthwhile if the symptoms are severe enough because of the risks involved in invasive procedures.
I would not call a PEM test invasive but I would consider it likely damaging and wouldn't recommend in general. A blood draw is hardly invasive and there is absolutely no reason why the tests cannot be cheap. Like $5 cheap - far cheaper than the $100K this person already spent.
Sure that's not an example of an invasive test.
> Even if I did the only way to get an accurate comparison would be to wipe both machine and install an OS from scratch so that they are running the same software--the customer doesn't want us to do such an invasive procedure.
You don't need to do any of that if you run benchmarks against averages. For example, PassMark or Geekbench are decent tools for assessing expected performance.
The problem with extrapolating this to humans is that benchmarks for people are wildly variable.
Given the specific nature of the authors complaints, I can almost guarantee that he underwent some standard benchmark tests.
Some people are fine playing games at 20 fps, some people swear they can notice a 10fps difference at near 120fps.
Severe joint pain and fatigue to one person might be something not even worth mentioning to another.
> In similar cases I couldn't find a machine with identical hardware to a 5 year old computer without spending way more money than this was worth.
> Even if I did the only way to get an accurate comparison would be to wipe both machine and install an OS from scratch so that they are running the same software--the customer doesn't want us to do such an invasive procedure.
Then you said:
> Benchmarks were part of every standard diagnosis, not just the weird cases.
So, you had a base objective measure, so why did you say that you could only measure it if you had a clean computer? You could install a fresh hard drive, boot into a PE and demonstrate to the customer its not slow, etc, so many things.
And then:
> Of course, but the entire point of that story is that people can have different subjective experiences of the same objective truth.
I am not trying to be a dick, but it seems more like the story was contrived to give your analogy some armor.
Because I didn't realize when you said "You could have ran benchmarks, found a machine with identical hardware, etc."
That you were talking about 2 separate things. I thought you were saying I could have ran benchmarks on this computer and compared to the benchmarks on an identical computer.
>I am not trying to be a dick, but it seems more like the story was contrived to give your analogy some armor.
There was no one single story. I saw plenty of cases like that. The contrived part was that they came in 30 times--that was exaggerated to match the number of cases in the original post. The kind of people who bring their computers into Geek Squad general don't care about objective measurement. They care about their subjective experience of whether this computer feels fast or not.
Sometimes it feels slower than it did when it was new for a real reason that isn't fixable--the OS was upgraded and some of the interactions feel slower even though the synthetic benchmarks are the same. The software they are running now has been bloated over the last 5 years by new features etc...
Sometimes it's some weird combination of stuff that you're never going to see unless you sit and watch them for a whole day. Sometimes it's stuff they'd never do while you're watching like opening 10 different porn videos at a time.
But the point is it's an analogy. It doesn't matter if it actually happened or not. It's designed to make a comparison to the original problem but in a domain that more people here will have had experience with--diagnosing computer problems vs being a doctor.
Just did it last Saturday in fact.
AI didn't actually give the initial possibility of having an autoimmune disease.
“Likely” had?
I read your post and comments last week when you copied it across a lot of subreddits, but I feel like the specific details of your story are still changing.
I understand you want to promote your side project, but the way you’re vaguely promoting it as having solved a medical mystery is playing a dangerous game with people who are desperate to hear answers from your tool.
So it’s functioning as a second opinion
I fed into ChatGPT my similar symptoms and test results and it came up with a variety of diseases that I, after further testing, don't have.
I don't really know what the answer is. If AI systems are going to be used to deny people coverage (and they will be), why shouldn't patients have AI of their own? On the other hand, there's plenty of examples of AI giving out completely wrong advice, and it may be difficult for doctors to get them to accept that. Not to mention entire politicised subcultures are already built around medical misinformation.
To an external observer, there is no difference between someone who has a very low pain threshold and experiences normal body wear as extremely painful, and someone who has some mechanical condition causing pain.
> but endometriosis seems to be particularly bad.
I've known people who had endometriosis successfully treated after a long struggle to get someone to believe them.
And I've known someone who after a long struggle to convince someone to believe them, finally found someone. Then underwent extremely invasive and expensive surgery with no improvements.
It's an extremely difficult issue and it sucks for everyone involved.
If anything, it's a bit sad that this person felt so let down by their healthcare system that they decided to build software that glues their EMR and LLMs together (maybe that was therapeutic in and of itself)
This doesn't mean I'm dismissing AI for diagnostics outright, but multiple good doctors have confirmed to me that many auto-immune diseases are fiendishly hard to diagnose as diseases in and of themselves vs. inflammation downstream from some other condition. The main problem isn't medical incompetence or apathy.
Autoimmune diagnosis is broken, and it IS a systems problem. The hospital system itself incentivizes compartmentalization of your different body systems to different specialists, because it allows the hospital to do less central planning and smoothes out the financial side of things (e.g. which departments do we invest in next year).
Even if the cause is found, for many diseases the treatment is just "eat healthy and exercise".
People think medicine is like fixing bugs in a code. Just a lot of tests, eventually a single cause is found, a pill is taken and the person is fixed. Reality seems to be closer to this: as you age, you accumulate damage everywhere. Eventually this damage is going to kill you, but before that it just makes you a bit slower and more tired. Sometimes, if you're lucky, some of this damage can be reversed, but mostly not.
Tell me you don't know anyone with an autoimmune disease, without telling me you don't know anyone with an autoimmune disease!
This is exactly the experience of a lot of people, my wife included. It took years to finally get a diagnosis, partly because it took her a long time to convince herself that it wasn't all in her head (much of which was due to gaslighting and general incompetence of doctors), and then once she was convinced she had a problem, finding a doctor who would actually take her seriously was a total mission. There is an enormous class of poorly-understood conditions which result in weird vague symptoms that come and go, and could be explained by many different factors. These symptoms can really destroy your quality of life, but it can be almost impossible to get them diagnosed, and there are often poor treatment options even if you do.
I really try not to take my health for granted now. We are well off financially, but it doesn't matter how much money we have, there's nothing anyone can do about the sort of condition my wife has, at least currently.
My dad has rheumatoid arthritis, my grandmother had rheumatoid arthritis and died from leukemia likely caused by treatment for it. The same grandmother's brother died of an autoimmune lung disease. My favorite uncle has been living with MS for 20 years. I have a family friend with Lupus. And a friend with Type-1 diabetes.
I guess looking at your list they're mostly the better-known autoimmune conditions (except for Lupus and perhaps the lung one), and diagnosis might have been easier.
My mom has a non-autoimmune related health issue (Costochondritis) that has been difficult to diagnose and she's been dealing with that for the last 7 years or so. It sucks having a health problem that no one can diagnose. Even in the case where you don't have a mechanical issue, the pain is still real.
My concern is that for every person with a rare disease causing vague symptoms, there are more people with similar vague symptoms that don't have an underlying rare disease. When you tell people things like "keep going to new doctors until you find one that believes you", or "do your own research", or "use my AI tool that I diagnosed myself with", those people who don't have an underlying disease will do those things too.
And if they do enough tests, or see enough doctors, they'll eventually get a diagnosis. If they see enough doctors, and push hard enough, they'll eventually find a quack who will do all kinds of procedures on them.
One of my mom's friends was convinced she had endometriosis, she doctor shopped for years until she found someone willing to do surgery in a city several hours a way. She still suffers from complications from the surgery, and her other symptoms are no better off.
I know of a kid who came very close to dying from an infection because his parents were convinced that he had chronic Lyme and they doctor shopped until they found someone willing (but not qualified) to install a central line to administer antibiotics.
Even if you have an underlying condition, doctor shopping and doing your own research is no guarantee that your eventual diagnosis is the right one.
I'm not saying you shouldn't advocate for yourself. Nearly everything is a continuum, but when you cross the line into "Doctors are idiots, only I can diagnose myself territory", you're headed into dangerous waters. Educating yourself is fine, diagnosing yourself is the problem.
This is a problem, for sure, and additionally the people with vague (perhaps even imagined) symptoms probably vastly outnumber the ones with legit but weird conditions. But for the people with those conditions who can't find a doctor who will take them seriously, what are they supposed to do? I know a few of them, and I'm unwilling to basically throw them under the bus for the greater good. IMO (going back to OP), if LLMs give them a few options that they can go back to a doctor and ask "Could it be this? How can we rule that out?" could be really life-changing.
Is the average person in such bad health that they believe you're heading downhill in your late twenties??? In most sports this is peak athleticism.
I'm in my mid forties, and obviously I'm slowing down, but if I felt those symptoms I'd be concerned, too.
I was curious so I looked up the author on LinkedIn and he appears to be in his 40s. Where did you get late 20s?
>but if I felt those symptoms I'd be concerned, to
The problem is "felt those symptoms" is subjective. One person might complain because they're a little more tired after a workout than they were in their 20s, but another person might not even notice the exact same thing.
One person might be hyper aware of every little muscle spasm and twinge of pain, another person might just ignore it.
There's actually a fair bit of evidence that depression can make people experience normal muscle contractions used to move food through your GI tract as pain. Doesn't mean it's not real pain to the person involved, but it does make non specific belly pain very unhelpful for doctors trying to diagnose underlying medical issues.
Normally, if a pt comes in and has non-specific symptoms, I'd order up the normal stuff (CBC, A1C, MMA (flat B12 tests are garbage), ANA, Titer, Thyroid tests (full panel). If they are within RR, then the next step is to pinpoint their symptoms. Fatigue? It could be numerous things. Are they taking medications they did not list on their NPF?
Now, we are currently facing a challenge with 'PCAS' (also known as long covid) which is making it very difficult to dx (and rx treatments).
I've worked in tech support too, and at the beginning some people were just doing things wrong. I tried to give them advice, but they weren't always willing to listen, or it led to lots more work to fix the root cause. I started to learn to help them with the current problem only, and not get philosophical because the time saved could help other people.
But this gets turned around if you are the person with the problem. It turns into people helping you by treating a symptom instead of doing systemic / holistic diagnosis and treatment.
I've found lots of people who have struggled with medical conditions, only to finally get a diagnosis (and treatment!) that looking backwards was blindingly obvious.
Those symptoms could be caused by almost anything. In the end the author says they "likely have an autoimmune disorder". To be honest just from that list of symptoms, my first guess would be aging. I really don't buy that this person's AI tool did anything here. I think they probably got lucky even assuming the "autoimmune disorder" is the actual cause of these symptoms.
> I spent over $100k visiting more than 30 hospitals and specialists, trying everything from standard treatments to experimental protocols at longevity clinics
I get it that this sucks. But when you have a list of vague symptoms that aren't very serious, could be caused by anything, and your records show 30 visits to hospitals and specialists, and you start talking about experimental life extension treatments, the vast majority of doctors are going to write you off almost immediately as a hypochondriac.
It's the same in any profession. I worked at Geek Squad during college. Someone comes in 30 times because "my computers feels a little slow", we've ran every test we can think of, and nothing is wrong. In that case I'm going to place the blame on either user perception--this specific customer has unreasonable expectations about what is slow and fast. Or there's a minor non-serious issue with his computer that no one is likely to be able to diagnose without doing something seriously invasive that is likely to cause more harm than the issue.