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>> I’m not a conspiracy nut. I believe in listening to experts (but ultimately making an informed decision). I believe in modern medicine. But that experience s

>> I’m not a conspiracy nut. I believe in listening to experts (but ultimately making an informed decision). I believe in modern medicine. But that experience shook me and forever changed my trust in the dental industry. Ask anybody who’s experienced a “chronic” illness about the “experts” and they’ll tell you a tale or two. The experts are great until they have a case that is unusual. The don’t have the time or knowledge to treat you properly. You get passed from “expert” to “expert” each time having your hopes dashed. You start feeling like a conspiracy nut chatting with other patients online sharing what’s anecdotally helped. After running into this issue more than once I’ve lost all blind trust in medical experts. I’ll verify what they tell me as best I can and get second opinions if necessary. In one case I was passed up the chain of experts until I finally found the right one myself after a year, and it still blows my mind that this wasn’t the first referral. The system is at the same time incredible and awful.

chrismarlow9 3y ago
Same experience here. My analysis is it's a money milking scheme between groups of doctors. Pass you around so everyone gets a cut and they cross refer people to scratch each other's backs. Surgeon refers you to pain management and pain management refers you to surgeon. Add in a physical therapist, testing facility, and chiropractor and you got a pretty lucrative meshnet of referrals going.
- basisword 3y ago
  Tbf in my case this was NHS so no money to be made by referrals afaik. It mostly seems to be a lack of up-to date knowledge paired with a reluctance to take the initiative and research the latest information for a specific case. As a substitute they refer you up the chain where the same problem also exists.
  - wizofaus 3y ago
    > NHS so no money to be made by referrals afaik I wouldn't assume that - just because the money isn't coming from your pocket directly, it's inevitable there are doctors that milk the system. But you'd think bureaucrats whose job it is to assess the legitimacy of requests to the NHS (or equivalent institution in your own country) for payment might be harder to swindle than your typical patient.
- darkerside 3y ago
  Hanlons razor
- maeil 3y ago
  While this might happen, it's certainly a tiny minority of cases. In most cases it's just too big of an ego to admit that they really don't know, and not willing (private practice) or unable to (employed by a big hospital) spend the large amount of time needed to raise the chance of finding the cause from 0% to maybe 2%. Truth is that modern medicine still knows much less than is often assumed, let alone individual doctors. There's an absurd amount of potential for LLMs here.
  - newaccount74 3y ago
    I was with you until the last sentence: > There's an absurd amount of potential for LLMs here. The problem is not that doctors are stupid, the problem is that a lot of ailments are just not easily diagnosed. Even if the doctor has one (or more) suspicions what the red rash on your skin is, there just aren't any tests for many conditions. Many diseases are only diagnosed by symptoms and the underlying cause is unknown. And even if you get a diagnosis, there is often nothing you can do. LLMs are not going to magically come up with cures.
    - palata 3y ago
      Is LLM the new web3, where people just keep throwing it as a solution for every problem they encounter? Seems like it... Maybe soon they will throw LK-99 at every problem?
      - arolihas 3y ago
        LK-99 is already on the blockchain https://coinbrain.com/coins/bnb-0xb131f5e8ec273af4652eecdd87976891513a6778 https://coinbrain.com/coins/bnb-0xb131f5e8ec273af4652eecdd87... This will change everything
      - Retric 3y ago
        People always default to whatever the new thing is being somewhat magical. Radiation as a medical cure all didn’t age particularly well, but it’s not like the same people are falling into the trap. It’s been common across many generations and cultures, I doubt it’s going to change any time soon.
- Etrnl_President 3y ago
  Read HIPAA when you get the chance; Specifically how to calculate cost. Everyone who talks to the patient, who touches them, and who is consulted by the doctor, gets to charge. Yup, that means if another doctor happens to walk by, and confirms what he just told me, he gets to charge me again (double). Feels like theatre every time I go to the doctor, so I just tell the secretary "I'm talking to you and Doc, no one else", and just quietly stare at anyone else who pops in. Usually insurance covers this stuff, but I was uninsured when I discovered it .
- selcuka 3y ago
  > My analysis is it's a money milking scheme between groups of doctors. Pass you around so everyone gets a cut and they cross refer people to scratch each other's backs. This is accurate. Years ago I had a kidney stone and the GP asked for an IVU (Intravenous urography) image to make sure about the size. The report prepared by the radiologist had the statement "operation is required". When I got back to my GP just laughed sarcastically and told me that it was nothing to be worried of. He also said "the radiologist just wanted to return the favor, in case the GP wanted to operate". He was sick of this scheme too, but there was nothing he could do.
- prawn 3y ago
  Most of the complaints I read in this conversation have been about people NOT getting referred for scans when they've reported discomfort!
ransom1538 3y ago
"The experts are great until they have a case that is unusual. " I was so pissed by this I created a way to find experts. People that actually studied the issue, have actual publish papers on the topic. What I found was no one cared. No one wanted "experts" - they want a specialist that is in their network and close. Example of searching for mohs surgury. https://www.opendoctor.io/research/?research_papers=mohs&zip=32766&search=search https://www.opendoctor.io/research/?research_papers=mohs&zip...
- basisword 3y ago
  Interesting service, thanks for sharing. I think most people are looking for their GP to be able to refer them to the correct specialist which seems fair. It shouldn’t be on the patient to try to find them. But good website nonetheless! (FYI it doesn’t display great on mobile Safari - content too wide so there is horizontal scrolling).
- ambicapter 3y ago
  If this is in the US it would make sense that people are really bound by their insurance provider as to who they are allowed to see cheaply.
  - deleted 3y ago
    [deleted]
- atlas_hugged 3y ago
  Wow this is awesome. You should post this as it’s own show HN thingy.
- jcborro 3y ago
  This is great, thank you.
- susiecambria 3y ago
  I've often been struck dumb by the passive nature of so many people when facing health problems. My dad had multiple myeloma and was satisfied with local hosp. Nope. Made him go to Yale and the Dana Farber. He got the best care possible. I struggled with back pain and told to go to a neurologist and informed my GP where I would and wouldn't go. The doc I was referred to was a no-go since I know him personally and he's a lying piece of shit in his personal life, I'm not trusting him with my back! Docs could NOT understand. "But he's so nice." Screw that. Time and again, family and friends settle. I understand the insurance component, but even then, can you not find better? And thank you for your work. It's very cool.
jasonwatkinspdx 3y ago
This is very true. I had a SO with severe chronic gastric pain and they got passed around by doctors for years. One jerk wrote "drug seeking behavior" into her file and that made things even worse. Finally someone took her seriously, got imagery done, and discovered surgery was necessary. In US healthcare you have to be your own advocate and be willing to push. The system breaks down if you don't have a routine and obvious illness.
- Etrnl_President 3y ago
  Now imagine doing this on Canadian healthcare, having to wait months or years for each appointment, and nowadays they try to talk you into MAID to save resources…
  - DropInIn 3y ago
    No one is talking anyone into going the MAID route, that's just some far right conservative party bs. Really, you just engaged in deception and promulgation of propaganda intended to push people toward neofascist ideology. Shame on you.
  - canucker2016 3y ago
    MAID == Medical assistance in dying (assisted suicide) Went from nothing/reluctance to popular for some segments of the population
  - mikeyouse 3y ago
    I know HN is a privileged place but people should recognize that the “worst case” of Canadian/European healthcare wait times is already the reality for many if not most Americans.. You shouldn’t base your understanding of American health care on personal experience if you work for a big company that provides a nice health insurance plan.
    - deleted 3y ago
      [deleted]
    - 3y ago
colordrops 3y ago
This whole fear of being labeled a "conspiracy nut" for exploring less trodden paths needs to end. Calling people conspiracy nuts for looking behind curtains they shouldn't was a good tactic by various entities to cover up secrets and misdeeds, but it has spilled over into the non political arena and poisoned everything. Humans don't have a full understanding of everything, and in fact it's quite the opposite, in that we don't understand almost everything. Almost all paths are untrodden. It's fine to look where others haven't and come up with your own theories and ideas, as long as you retain a healthy skepticism and back things up with data as much as you can. Science and exploration should not use fear of social reprisal as a guide.
- daddylongstroke 3y ago
  Pretty sad that you have to state the obvious ey? Amazed daily by the closed-mindedness on HN.
- CyberDildonics 3y ago
  This whole fear of being labeled a "conspiracy nut" for exploring less trodden paths needs to end People get called conspiracy nuts when they make big claims with no real evidence. That is the opposite of 'science and exploration'. The difference is always evidence. Go on a conspiracy site and ask for hard evidence of anything and they will get very upset.
- ryandrake 3y ago
  I’m torn about this now. I used to cautiously support the practice of double checking your doc, but not wholeheartedly because of all the various quacks: essential oil moms, natural/spiritual healers, psychics, supplement sellers, crystal therapists, “old school” (pre-COVID) antivaxers and so on, muddying the water. Until COVID came around and unearthed the absolute hoards of dO yOuR oWn ReSeArCh imbeciles. Now the sensible practice of getting a second opinion and exploring other options/doctors has been mixed up with the kooks: extreme politics and actual conspiracy theories, to the point where it’s hard to take any of it seriously. When someone now says they don’t trust doctors, you have to dig deeper to understand if it’s someone genuinely seeking out other options, or if it’s one of Those People who’ve gone off the deep end.
mapt 3y ago
House, MD was a fictional show on how the medical system is supposed to work, with abundant detective work and testing of hypotheses and pursuing a solution until one is found. On the other hand, from the administrator's perspective: "Your team of four people treat about one patient a week, why am I paying your salaries again?" In our universe, I probably won't receive that much medical care in my lifetime.
- cancerhacker 3y ago
  If you ever get cancer... Maybe it's just that I lucked into getting the most aggressive oncologists, but on more than one occasion I was sent to get an MRI or CT on the spur of the moment. There were times when it was scheduled out as well - but along the lines of "come back in six months; we'll schedule the CT for the week before". (But I know I was lucky - my oncologist could order a river to reverse itself and it probably would.)
  - tomcam 3y ago
    Your profile and your user name seem to imply you’ve changed the direction of your career? Glad you’re alive, by the way.
- matheusmoreira 3y ago
  Yeah. There's a finite amount of resources and a literally never ending avalanche of patients. At some point they're going to have to make a cold calculation. I don't really know how it works in the US but here in Brazil it's actually pretty easy to order laboratory tests and imaging studies. There's taxpayer funded public health care but it can't handle the demands of the entire population so people would rather pay for the ultrasound or CT scan than wait two years for the government to provide it. An ultrasound costs about $30, an MRI costs about $150 and the price of a CT scan is somewhere between those two.
x86x87 3y ago
1000% they have optimized for the things that they see often and most of the times they don't even consider what else could be going on (even if they maybe know about it). Ultimately it's on you to understand what they are saying and to decide if what they're saying makes sense. When in doubt you should never ever be afraid to ask for a 2nd, 3rd, 4th and so on opinion. Don't even get me started on diseases where we have medication that sort of works with tons of side effect where no significant progress has been made for decades. If you're alergic to the said medication or your side effects make it a no go, tough luck!
megablast 3y ago
> The experts are great until they have a case that is unusual. But this is true for every thing in the planet. Data modelling, computer programming, building, everything. Name something that the unusual is not more complicated and difficult to do. Why would anyone think that it would not be true for the health field?? I think the problem is people think health is magical and everything is known. Because they choose not to educate themselves.
- ekianjo 3y ago
  > I think the problem is people think health is magical and everything is known. The problem is most doctors have absolutely no humility and will never admit to not knowing something. I don't see that behavior among engineers.
  - bhawker 3y ago
    "The problem is most doctors have absolutely no humility and will never admit to not knowing something. I don't see that behavior among engineers." That is incredibly surprising.
  - bsagdiyev 3y ago
    Really? Because I see it a lot in "engineers" in tech. They're right, you're wrong and that's how it plays out.
  - mrguyorama 3y ago
    I mean that behavior is literally HN incarnate, so you might be exhibiting exactly that in this comment.
woliveirajr 3y ago
This. But the deep trouble kicks in when you're prescribed some treatment (a wrong one), your situation gets worst, and then the next "expert" has to deal with the original condition plus the new symptoms. Sometimes (when possible) you just reset yourself: stop all medications for some days, so that the collateral effects are gone and you're left with the original condition (aggravated, of course, because you left the one medication that was working with the 3 others that were just giving you wrong symptoms), and then another "expert" begins from the "start".
pfisherman 3y ago
One thing that I think people need to understand is the distinction between science and the practice of medicine. The practice of medicine is not science. The practice of medicine can be informed by science - to a degree that is almost entirely up to the practitioner. ; but it remains more art than science. The distinction is similar to that between an aviation maintenance and aerospace engineering. Sometimes doctors are just out of their depth.
- kzrdude 3y ago
  Do doctors know this? We need to tell them they need to practice at the art, to get better at it.
  - KRAKRISMOTT 3y ago
    They are bound by regulations and liability, your typical GPs and even the specialists can't greenlight experiments outside of big research hospitals. Medicine and clinical diagnosis are heavily regulated. That's also why you rarely see single author papers in practical clinical medicine. Doctors are busy people, with horrendous work life balance. Most software engineers have it way easier, you get to choose your tools and you get to choose where you want to work. In the business of software engineering, a sufficiently senior engineer can get away with a lot of nonsense without risk of lawsuits.
  - mensetmanusman 3y ago
    HIPPA doesn’t allow it (yet?), you have to do it yourself.
- Cpoll 3y ago
  > aviation maintenance and aerospace engineering Which is which though? As I understand it, aviation maintenance is quite rigorous, systematic, and informed by and taking into account every mistake made in the past.
  - daddylongstroke 3y ago
    Absolutely right! Maybe the most regulated industry in the US, but not positive.
idopmstuff 3y ago
This is the place where I'm really hopeful that AI can help people sooner rather than later. A lot of these diagnoses just involve large-scale, complex pattern matching - the problem is that docs don't know what pattern to look for because the diagnoses are rare, and they're often not asking the right questions for the same reason. I knew someone who had an extremely rare genetic disorder (her family represents about half the people diagnosed) and just by sheer, dumb luck, her doctor happened to know the single doctor at NIH who specialized in it. It's a really ideal use case for AI - not only figuring these things out but also doing things like clinical trial and research matching.
JenrHywy 3y ago
I had a neurologist tell me that the scans he'd performed proved that there was nothing wrong with my wife, and he didn't know why she was choosing to act as though she had a neurological issue. In neurology at least, I think a lot of the problem is that everyone is hyper-specialized. Luckily for us, my wife's insurance company convinced a generalist neurologist to come out of retirement and examine her, which put us on the path to effective treatment. But yes, that whole experience completely soured me on blind trust in the medical profession
- yoz 3y ago
  It's particularly bad when it comes to treating women. Doctors tend to believe that female patients exaggerate pain in comparison to male patients, in accordance with stereotypes that portray men as "stoic" and women as "emotional". The bias is systemic, with female doctors often assuming the stereotype too[1]. You can trace this bias back through medical literature which (often subconsciously) reiterates these stereotypes[2]. It shows up in many statistics, such as the difference in wait times for analgesics: women reporting pain had to wait an average of 30% longer than men.[3] But a key cause of the problem is worse than just assumption of stereotypes: it's that modern medicine still knows far more about men than it does women. For centuries, the primary medical research and literature was done by men, about men, for the treatment of men. Most of the clinical trials performed in the 20th century enrolled far fewer women than men, and often _none at all_.[4] Of course, gender is not the only bias that shows up in medicine. Age, race, (dis)ability, body shape, and economic/social status are all useful factors to keep in mind when considering why certain people, even entire sectors of society, aren't getting the treatment they should. - [1] https://www.dovepress.com/the-roles-of-gender-and-profession-on-gender-role-expectations-of-pain-peer-reviewed-fulltext-article-JPR https://www.dovepress.com/the-roles-of-gender-and-profession... - [2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845507/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845507/ - [3] https://onlinelibrary.wiley.com/doi/full/10.1111/j.1553-2712.2008.00100.x https://onlinelibrary.wiley.com/doi/full/10.1111/j.1553-2712... - [4] https://www.theguardian.com/lifeandstyle/2019/nov/13/the-female-problem-male-bias-in-medical-trials https://www.theguardian.com/lifeandstyle/2019/nov/13/the-fem...
rawbert 3y ago
Yes, wanted to write the same. I met many of those experts, and some of them try even blame the patient as some kind of "psycho" when the symptoms dont match any text book definitions. But to be honest: There are also some motivated and honest doctors. If you find one of these, stick to them.
hutzlibu 3y ago
"The experts are great until they have a case that is unusual." Also the very standard cases, they can mess up very badly. "The system is at the same time incredible and awful." The science behind the medicine is awesome, but the standard implementation is horrible and not up to at all, where we could be.
Aerbil313 3y ago
Modern healthcare is very bad at treating chronic illnesses. Symtomatic treatment is not a cure. I believe if people would live by these simple rules chronic diseases would be actually prevented and cured (in order of importance and effectiveness): 1. Don't mouthbreathe and don't overbreathe. See "Breath - The New Science of A Lost Art" by James Nestor for why and how. 2. Don't eat sugar, it's a chronic poison. See https://www.youtube.com/watch?v=dBnniua6-oM https://www.youtube.com/watch?v=dBnniua6-oM 3. Min. 1 hr of physical activity per day. Your body is not meant to sit all the time. 4. Avoid noise of the city life as much as you can. It leads to chronic stress and thus chronic diseases. Noise-cancelling earphones may help.

chrismarlow9 3y ago

Same experience here. My analysis is it's a money milking scheme between groups of doctors. Pass you around so everyone gets a cut and they cross refer people to scratch each other's backs. Surgeon refers you to pain management and pain management refers you to surgeon. Add in a physical therapist, testing facility, and chiropractor and you got a pretty lucrative meshnet of referrals going.

basisword 3y ago
Tbf in my case this was NHS so no money to be made by referrals afaik. It mostly seems to be a lack of up-to date knowledge paired with a reluctance to take the initiative and research the latest information for a specific case. As a substitute they refer you up the chain where the same problem also exists.
- wizofaus 3y ago
  > NHS so no money to be made by referrals afaik I wouldn't assume that - just because the money isn't coming from your pocket directly, it's inevitable there are doctors that milk the system. But you'd think bureaucrats whose job it is to assess the legitimacy of requests to the NHS (or equivalent institution in your own country) for payment might be harder to swindle than your typical patient.
darkerside 3y ago
Hanlons razor
maeil 3y ago
While this might happen, it's certainly a tiny minority of cases. In most cases it's just too big of an ego to admit that they really don't know, and not willing (private practice) or unable to (employed by a big hospital) spend the large amount of time needed to raise the chance of finding the cause from 0% to maybe 2%. Truth is that modern medicine still knows much less than is often assumed, let alone individual doctors. There's an absurd amount of potential for LLMs here.
- newaccount74 3y ago
  I was with you until the last sentence: > There's an absurd amount of potential for LLMs here. The problem is not that doctors are stupid, the problem is that a lot of ailments are just not easily diagnosed. Even if the doctor has one (or more) suspicions what the red rash on your skin is, there just aren't any tests for many conditions. Many diseases are only diagnosed by symptoms and the underlying cause is unknown. And even if you get a diagnosis, there is often nothing you can do. LLMs are not going to magically come up with cures.
  - palata 3y ago
    Is LLM the new web3, where people just keep throwing it as a solution for every problem they encounter? Seems like it... Maybe soon they will throw LK-99 at every problem?
    - arolihas 3y ago
      LK-99 is already on the blockchain https://coinbrain.com/coins/bnb-0xb131f5e8ec273af4652eecdd87976891513a6778 https://coinbrain.com/coins/bnb-0xb131f5e8ec273af4652eecdd87... This will change everything
    - Retric 3y ago
      People always default to whatever the new thing is being somewhat magical. Radiation as a medical cure all didn’t age particularly well, but it’s not like the same people are falling into the trap. It’s been common across many generations and cultures, I doubt it’s going to change any time soon.
Etrnl_President 3y ago
Read HIPAA when you get the chance; Specifically how to calculate cost. Everyone who talks to the patient, who touches them, and who is consulted by the doctor, gets to charge. Yup, that means if another doctor happens to walk by, and confirms what he just told me, he gets to charge me again (double). Feels like theatre every time I go to the doctor, so I just tell the secretary "I'm talking to you and Doc, no one else", and just quietly stare at anyone else who pops in. Usually insurance covers this stuff, but I was uninsured when I discovered it .
selcuka 3y ago
> My analysis is it's a money milking scheme between groups of doctors. Pass you around so everyone gets a cut and they cross refer people to scratch each other's backs. This is accurate. Years ago I had a kidney stone and the GP asked for an IVU (Intravenous urography) image to make sure about the size. The report prepared by the radiologist had the statement "operation is required". When I got back to my GP just laughed sarcastically and told me that it was nothing to be worried of. He also said "the radiologist just wanted to return the favor, in case the GP wanted to operate". He was sick of this scheme too, but there was nothing he could do.
prawn 3y ago
Most of the complaints I read in this conversation have been about people NOT getting referred for scans when they've reported discomfort!

ransom1538 3y ago

"The experts are great until they have a case that is unusual. " I was so pissed by this I created a way to find experts. People that actually studied the issue, have actual publish papers on the topic. What I found was no one cared. No one wanted "experts" - they want a specialist that is in their network and close. Example of searching for mohs surgury. https://www.opendoctor.io/research/?research_papers=mohs&zip=32766&search=search https://www.opendoctor.io/research/?research_papers=mohs&zip...

basisword 3y ago
Interesting service, thanks for sharing. I think most people are looking for their GP to be able to refer them to the correct specialist which seems fair. It shouldn’t be on the patient to try to find them. But good website nonetheless! (FYI it doesn’t display great on mobile Safari - content too wide so there is horizontal scrolling).
ambicapter 3y ago
If this is in the US it would make sense that people are really bound by their insurance provider as to who they are allowed to see cheaply.
- deleted 3y ago
  [deleted]
atlas_hugged 3y ago
Wow this is awesome. You should post this as it’s own show HN thingy.
jcborro 3y ago
This is great, thank you.
susiecambria 3y ago
I've often been struck dumb by the passive nature of so many people when facing health problems. My dad had multiple myeloma and was satisfied with local hosp. Nope. Made him go to Yale and the Dana Farber. He got the best care possible. I struggled with back pain and told to go to a neurologist and informed my GP where I would and wouldn't go. The doc I was referred to was a no-go since I know him personally and he's a lying piece of shit in his personal life, I'm not trusting him with my back! Docs could NOT understand. "But he's so nice." Screw that. Time and again, family and friends settle. I understand the insurance component, but even then, can you not find better? And thank you for your work. It's very cool.

jasonwatkinspdx 3y ago

This is very true. I had a SO with severe chronic gastric pain and they got passed around by doctors for years. One jerk wrote "drug seeking behavior" into her file and that made things even worse. Finally someone took her seriously, got imagery done, and discovered surgery was necessary. In US healthcare you have to be your own advocate and be willing to push. The system breaks down if you don't have a routine and obvious illness.

Etrnl_President 3y ago
Now imagine doing this on Canadian healthcare, having to wait months or years for each appointment, and nowadays they try to talk you into MAID to save resources…
- DropInIn 3y ago
  No one is talking anyone into going the MAID route, that's just some far right conservative party bs. Really, you just engaged in deception and promulgation of propaganda intended to push people toward neofascist ideology. Shame on you.
- canucker2016 3y ago
  MAID == Medical assistance in dying (assisted suicide) Went from nothing/reluctance to popular for some segments of the population
- mikeyouse 3y ago
  I know HN is a privileged place but people should recognize that the “worst case” of Canadian/European healthcare wait times is already the reality for many if not most Americans.. You shouldn’t base your understanding of American health care on personal experience if you work for a big company that provides a nice health insurance plan.
  - deleted 3y ago
    [deleted]
  - 3y ago

colordrops 3y ago

This whole fear of being labeled a "conspiracy nut" for exploring less trodden paths needs to end. Calling people conspiracy nuts for looking behind curtains they shouldn't was a good tactic by various entities to cover up secrets and misdeeds, but it has spilled over into the non political arena and poisoned everything. Humans don't have a full understanding of everything, and in fact it's quite the opposite, in that we don't understand almost everything. Almost all paths are untrodden. It's fine to look where others haven't and come up with your own theories and ideas, as long as you retain a healthy skepticism and back things up with data as much as you can. Science and exploration should not use fear of social reprisal as a guide.

daddylongstroke 3y ago
Pretty sad that you have to state the obvious ey? Amazed daily by the closed-mindedness on HN.
CyberDildonics 3y ago
This whole fear of being labeled a "conspiracy nut" for exploring less trodden paths needs to end People get called conspiracy nuts when they make big claims with no real evidence. That is the opposite of 'science and exploration'. The difference is always evidence. Go on a conspiracy site and ask for hard evidence of anything and they will get very upset.
ryandrake 3y ago
I’m torn about this now. I used to cautiously support the practice of double checking your doc, but not wholeheartedly because of all the various quacks: essential oil moms, natural/spiritual healers, psychics, supplement sellers, crystal therapists, “old school” (pre-COVID) antivaxers and so on, muddying the water. Until COVID came around and unearthed the absolute hoards of dO yOuR oWn ReSeArCh imbeciles. Now the sensible practice of getting a second opinion and exploring other options/doctors has been mixed up with the kooks: extreme politics and actual conspiracy theories, to the point where it’s hard to take any of it seriously. When someone now says they don’t trust doctors, you have to dig deeper to understand if it’s someone genuinely seeking out other options, or if it’s one of Those People who’ve gone off the deep end.

mapt 3y ago

House, MD was a fictional show on how the medical system is supposed to work, with abundant detective work and testing of hypotheses and pursuing a solution until one is found. On the other hand, from the administrator's perspective: "Your team of four people treat about one patient a week, why am I paying your salaries again?" In our universe, I probably won't receive that much medical care in my lifetime.

cancerhacker 3y ago
If you ever get cancer... Maybe it's just that I lucked into getting the most aggressive oncologists, but on more than one occasion I was sent to get an MRI or CT on the spur of the moment. There were times when it was scheduled out as well - but along the lines of "come back in six months; we'll schedule the CT for the week before". (But I know I was lucky - my oncologist could order a river to reverse itself and it probably would.)
- tomcam 3y ago
  Your profile and your user name seem to imply you’ve changed the direction of your career? Glad you’re alive, by the way.
matheusmoreira 3y ago
Yeah. There's a finite amount of resources and a literally never ending avalanche of patients. At some point they're going to have to make a cold calculation. I don't really know how it works in the US but here in Brazil it's actually pretty easy to order laboratory tests and imaging studies. There's taxpayer funded public health care but it can't handle the demands of the entire population so people would rather pay for the ultrasound or CT scan than wait two years for the government to provide it. An ultrasound costs about $30, an MRI costs about $150 and the price of a CT scan is somewhere between those two.

x86x87 3y ago

1000% they have optimized for the things that they see often and most of the times they don't even consider what else could be going on (even if they maybe know about it). Ultimately it's on you to understand what they are saying and to decide if what they're saying makes sense. When in doubt you should never ever be afraid to ask for a 2nd, 3rd, 4th and so on opinion. Don't even get me started on diseases where we have medication that sort of works with tons of side effect where no significant progress has been made for decades. If you're alergic to the said medication or your side effects make it a no go, tough luck!

megablast 3y ago

> The experts are great until they have a case that is unusual. But this is true for every thing in the planet. Data modelling, computer programming, building, everything. Name something that the unusual is not more complicated and difficult to do. Why would anyone think that it would not be true for the health field?? I think the problem is people think health is magical and everything is known. Because they choose not to educate themselves.

ekianjo 3y ago
> I think the problem is people think health is magical and everything is known. The problem is most doctors have absolutely no humility and will never admit to not knowing something. I don't see that behavior among engineers.
- bhawker 3y ago
  "The problem is most doctors have absolutely no humility and will never admit to not knowing something. I don't see that behavior among engineers." That is incredibly surprising.
- bsagdiyev 3y ago
  Really? Because I see it a lot in "engineers" in tech. They're right, you're wrong and that's how it plays out.
- mrguyorama 3y ago
  I mean that behavior is literally HN incarnate, so you might be exhibiting exactly that in this comment.

woliveirajr 3y ago

This. But the deep trouble kicks in when you're prescribed some treatment (a wrong one), your situation gets worst, and then the next "expert" has to deal with the original condition plus the new symptoms. Sometimes (when possible) you just reset yourself: stop all medications for some days, so that the collateral effects are gone and you're left with the original condition (aggravated, of course, because you left the one medication that was working with the 3 others that were just giving you wrong symptoms), and then another "expert" begins from the "start".

pfisherman 3y ago

One thing that I think people need to understand is the distinction between science and the practice of medicine. The practice of medicine is not science. The practice of medicine can be informed by science - to a degree that is almost entirely up to the practitioner. ; but it remains more art than science. The distinction is similar to that between an aviation maintenance and aerospace engineering. Sometimes doctors are just out of their depth.

kzrdude 3y ago
Do doctors know this? We need to tell them they need to practice at the art, to get better at it.
- KRAKRISMOTT 3y ago
  They are bound by regulations and liability, your typical GPs and even the specialists can't greenlight experiments outside of big research hospitals. Medicine and clinical diagnosis are heavily regulated. That's also why you rarely see single author papers in practical clinical medicine. Doctors are busy people, with horrendous work life balance. Most software engineers have it way easier, you get to choose your tools and you get to choose where you want to work. In the business of software engineering, a sufficiently senior engineer can get away with a lot of nonsense without risk of lawsuits.
- mensetmanusman 3y ago
  HIPPA doesn’t allow it (yet?), you have to do it yourself.
Cpoll 3y ago
> aviation maintenance and aerospace engineering Which is which though? As I understand it, aviation maintenance is quite rigorous, systematic, and informed by and taking into account every mistake made in the past.
- daddylongstroke 3y ago
  Absolutely right! Maybe the most regulated industry in the US, but not positive.

idopmstuff 3y ago

This is the place where I'm really hopeful that AI can help people sooner rather than later. A lot of these diagnoses just involve large-scale, complex pattern matching - the problem is that docs don't know what pattern to look for because the diagnoses are rare, and they're often not asking the right questions for the same reason. I knew someone who had an extremely rare genetic disorder (her family represents about half the people diagnosed) and just by sheer, dumb luck, her doctor happened to know the single doctor at NIH who specialized in it. It's a really ideal use case for AI - not only figuring these things out but also doing things like clinical trial and research matching.

JenrHywy 3y ago

I had a neurologist tell me that the scans he'd performed proved that there was nothing wrong with my wife, and he didn't know why she was choosing to act as though she had a neurological issue. In neurology at least, I think a lot of the problem is that everyone is hyper-specialized. Luckily for us, my wife's insurance company convinced a generalist neurologist to come out of retirement and examine her, which put us on the path to effective treatment. But yes, that whole experience completely soured me on blind trust in the medical profession

yoz 3y ago
It's particularly bad when it comes to treating women. Doctors tend to believe that female patients exaggerate pain in comparison to male patients, in accordance with stereotypes that portray men as "stoic" and women as "emotional". The bias is systemic, with female doctors often assuming the stereotype too[1]. You can trace this bias back through medical literature which (often subconsciously) reiterates these stereotypes[2]. It shows up in many statistics, such as the difference in wait times for analgesics: women reporting pain had to wait an average of 30% longer than men.[3] But a key cause of the problem is worse than just assumption of stereotypes: it's that modern medicine still knows far more about men than it does women. For centuries, the primary medical research and literature was done by men, about men, for the treatment of men. Most of the clinical trials performed in the 20th century enrolled far fewer women than men, and often _none at all_.[4] Of course, gender is not the only bias that shows up in medicine. Age, race, (dis)ability, body shape, and economic/social status are all useful factors to keep in mind when considering why certain people, even entire sectors of society, aren't getting the treatment they should. - [1] https://www.dovepress.com/the-roles-of-gender-and-profession-on-gender-role-expectations-of-pain-peer-reviewed-fulltext-article-JPR https://www.dovepress.com/the-roles-of-gender-and-profession... - [2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845507/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845507/ - [3] https://onlinelibrary.wiley.com/doi/full/10.1111/j.1553-2712.2008.00100.x https://onlinelibrary.wiley.com/doi/full/10.1111/j.1553-2712... - [4] https://www.theguardian.com/lifeandstyle/2019/nov/13/the-female-problem-male-bias-in-medical-trials https://www.theguardian.com/lifeandstyle/2019/nov/13/the-fem...

rawbert 3y ago

Yes, wanted to write the same. I met many of those experts, and some of them try even blame the patient as some kind of "psycho" when the symptoms dont match any text book definitions. But to be honest: There are also some motivated and honest doctors. If you find one of these, stick to them.

hutzlibu 3y ago

"The experts are great until they have a case that is unusual." Also the very standard cases, they can mess up very badly. "The system is at the same time incredible and awful." The science behind the medicine is awesome, but the standard implementation is horrible and not up to at all, where we could be.

Aerbil313 3y ago

Modern healthcare is very bad at treating chronic illnesses. Symtomatic treatment is not a cure. I believe if people would live by these simple rules chronic diseases would be actually prevented and cured (in order of importance and effectiveness): 1. Don't mouthbreathe and don't overbreathe. See "Breath - The New Science of A Lost Art" by James Nestor for why and how. 2. Don't eat sugar, it's a chronic poison. See https://www.youtube.com/watch?v=dBnniua6-oM https://www.youtube.com/watch?v=dBnniua6-oM 3. Min. 1 hr of physical activity per day. Your body is not meant to sit all the time. 4. Avoid noise of the city life as much as you can. It leads to chronic stress and thus chronic diseases. Noise-cancelling earphones may help.