4 ms·

You may disregard my pseudonymous self’s statement, but one of my children had a weird disease, which I managed to figure out watching YouTube videos of similar

You may disregard my pseudonymous self’s statement, but one of my children had a weird disease, which I managed to figure out watching YouTube videos of similar symptoms and reading Wikipedia (at first, then pubmed etc) Over 40 doctors, most of them MD/PhDs, from 4 of the 10 top ranked hospitals in the world for the relevant issue, told me I’m an idiot, because that disease is a 1:10,000,000 thing, it can’t be the cause. It’s probably a virus and I should just go home and wait a few weeks. And after 3 months (10 days of which were in-patient) and 40 or so specialists, and 5 hospitals), a doctor looked at all the data and said “of course you are right, we start treatment tomorrow” and we did. All it cost was some irreversible brain and CNS damage, a few years at home - not much, right? And through the years and some Facebook groups, I’ve met other parents in similar situations. Some had a 5 year delay in diagnosis because it’s a rare disease, stories about the medical system incredibly similar. That’s 5 years of irreversible brain damage and general suffering. Also, it’s more likely severely under diagnosed and actually more like 1:1,000,000 It was just the beginning of a journey. An eye opening one about incompetence and incentives. The assumption that health authorities in particular (and authorities in general) have your best interest at heart, and are competent, are severely lacking in evidence. You might not have been bitten by that, and I’m happy for you that you weren’t. Health authorities and professionals optimize for a lot of things, that only sometimes coincide with your interests as an individual. E.g. they might prefer you stay sick than get better, if there’s a 1:10,000 chance you’ll sue them (regardless of merit). I am intimately familiar with such a case. Of note, the pharmaceutical industry, which is intimately intertwined with regulatory agencies and health authorities, is incentivized to make you a paying regular customer (Office 365) rather than selling you a one time product. Unfortunately, that means managed chronic illness rather than cure. Which is not to say HCQ or IVM or whatever are the cure. But the idea of “trusting the authorities” is something you only do until it bites you hard.

jacquesm 5y ago
And for every story like yours - and I know of a few of those - there are examples of people who were absolutely convinced that their child had 'x' or 'y' when it in fact wasn't the case. It is great that you had the perseverance to see this through, and unfortunately it isn't rare at all that local medical care is not up to speed with rare diseases or misdiagnosing a rare disease as a more common one. I lost a sister (at the ripe old age of 23) to such a case so I'm quite familiar with the territory. In spite of that the default for me is to follow what my doctors tell me, and only if it doesn't work would I start to read up more and to try to come up with suggestions, but not with diagnosis. Health authorities preferring you to stay sick rather than to get better should re-read the oath of the medical profession, that's despicable. And agreed that there is a lot wrong in mixing business and health care, but those are the kind of setups that we apparently favor. I recall a doctor here in NL remarking to me that money and health are mutually exclusive, because if doctors have to make decisions based on finance they are immediately transgressing their oath. I can see his point, but I also understand basic resource allocation issues and the medical profession does not operate in a vacuum. These are hard problems.
- beagle3 5y ago
  Indeed, the oath is a theatre prop and not much more. I reside in Israel these days, which has a system similar to NL ttbomk. The doctors that treat you (in the public system) are not incentivized other than to cure you, except perhaps through the occasional marketing cruise. But high up ministry of health people have been indicted (including through corona) for pushing and in some cases mandating useless treatments after receiving a bribe. The doctor at the hospital just got the memo “the recommended treatment in case of x is y”. These indictments are for what can actually be proved. I’m sure there are more cases that have not been found, and also in other countries. The only one who really has your best interests in my mind is yourself; if you are capable of doing research, you are likely more qualified for your own situation than specialists. WHO recommends against remdesivir. FDA and IMOH promote it as a wonderdrug. Who would you trust?
  - jacquesm 5y ago
    > WHO recommends against remdesivir. FDA and IMOH promote it as a wonderdrug. Who would you trust? My GP.
    - blindmute 5y ago
      Why would you trust a local GP? They are almost certainly the least knowledgeable person in the chain of authority from which you could choose to trust. They will either follow the guidelines or their anecdotal experience. You could read the research papers and the guidelines yourself and have a better understanding of the issue than a given GP. For anything rare, you could probably read the subreddit about the diagnosis and get more trustworthy advice than from a GP.
      - jacquesm 5y ago
        No, but he is in that chain of authority, and I'm not and if he passes on advice based on what he knows in general and what he knows about me I take it that he's not doing that because he wants to diminish the size of his practice. I could read the research papers and the guidelines, but for that I would first need a medical degree in the relevant (sub)fields, figure out who is and who isn't telling the truth/stacking the deck/fudging the data/angling for funding and so on and then finally I'd have to weigh those papers and all of their contradictions and arrive at some conclusion. The chances of me getting that wrong are just as high as the chances of my GP debugging a piece of software by reading papers about debugging. For rare diseases the job of a GP is not to diagnose but to pass you on to someone who can. You also have the right to a second opinion here in case you don't trust the advice that you are getting and finally, you can ask for arbitrage if you are then still not happy. That said, plenty of errors are made, but I don't think the software industry has any right to speak about mistakes made in other fields, our own house has been on fire for the last three decades in that respect and the only thing we've done to deal with it is to avow any responsibility.
deleted 5y ago
[deleted]
saalweachter 5y ago
I think you need to be careful to distinguish between two different kinds of failures of the medical system here. In your anecdote, you suffered a failure to diagnose, and specifically, a failure to diagnose a rare disease. This is unfortunate, and bad, and a problem to try to figure out, but it is a completely different sort of failure than what other people are proposing for HCQ or IVM, that there is a highly effective and inexpensive treatment that the medical establishment is failing to recognize despite apparently having such clear evidence in its favor that people on Facebook can understand it.
- beagle3 5y ago
  In that story, which is very long and has all kind of hollywood quality twists (and heros, and villains), there was a highly effective and (relatively, ~$10K overall) cheap treatment, where the official treatment was $30K/month with potential for stopping at some point, but most kids are on it for years before they can stop. The diagnostic failure was just the beginning. (And, unlike the HCQ/IVM case, which I don't support and is in general speculative - the guy responsible for the official recommendation was actually convicted for taking bribes from the company making the treatment. I won't divulge any details, because that will de-anonymize me - the disease is rare enough that people in the field know each other and all the cases). p.s: That treatment (in combination) is also used for other, similar diseases, each is rare, but overall it was a lucrative market for the drug company.

jacquesm 5y ago

And for every story like yours - and I know of a few of those - there are examples of people who were absolutely convinced that their child had 'x' or 'y' when it in fact wasn't the case. It is great that you had the perseverance to see this through, and unfortunately it isn't rare at all that local medical care is not up to speed with rare diseases or misdiagnosing a rare disease as a more common one. I lost a sister (at the ripe old age of 23) to such a case so I'm quite familiar with the territory. In spite of that the default for me is to follow what my doctors tell me, and only if it doesn't work would I start to read up more and to try to come up with suggestions, but not with diagnosis. Health authorities preferring you to stay sick rather than to get better should re-read the oath of the medical profession, that's despicable. And agreed that there is a lot wrong in mixing business and health care, but those are the kind of setups that we apparently favor. I recall a doctor here in NL remarking to me that money and health are mutually exclusive, because if doctors have to make decisions based on finance they are immediately transgressing their oath. I can see his point, but I also understand basic resource allocation issues and the medical profession does not operate in a vacuum. These are hard problems.

beagle3 5y ago
Indeed, the oath is a theatre prop and not much more. I reside in Israel these days, which has a system similar to NL ttbomk. The doctors that treat you (in the public system) are not incentivized other than to cure you, except perhaps through the occasional marketing cruise. But high up ministry of health people have been indicted (including through corona) for pushing and in some cases mandating useless treatments after receiving a bribe. The doctor at the hospital just got the memo “the recommended treatment in case of x is y”. These indictments are for what can actually be proved. I’m sure there are more cases that have not been found, and also in other countries. The only one who really has your best interests in my mind is yourself; if you are capable of doing research, you are likely more qualified for your own situation than specialists. WHO recommends against remdesivir. FDA and IMOH promote it as a wonderdrug. Who would you trust?
- jacquesm 5y ago
  > WHO recommends against remdesivir. FDA and IMOH promote it as a wonderdrug. Who would you trust? My GP.
  - blindmute 5y ago
    Why would you trust a local GP? They are almost certainly the least knowledgeable person in the chain of authority from which you could choose to trust. They will either follow the guidelines or their anecdotal experience. You could read the research papers and the guidelines yourself and have a better understanding of the issue than a given GP. For anything rare, you could probably read the subreddit about the diagnosis and get more trustworthy advice than from a GP.
    - jacquesm 5y ago
      No, but he is in that chain of authority, and I'm not and if he passes on advice based on what he knows in general and what he knows about me I take it that he's not doing that because he wants to diminish the size of his practice. I could read the research papers and the guidelines, but for that I would first need a medical degree in the relevant (sub)fields, figure out who is and who isn't telling the truth/stacking the deck/fudging the data/angling for funding and so on and then finally I'd have to weigh those papers and all of their contradictions and arrive at some conclusion. The chances of me getting that wrong are just as high as the chances of my GP debugging a piece of software by reading papers about debugging. For rare diseases the job of a GP is not to diagnose but to pass you on to someone who can. You also have the right to a second opinion here in case you don't trust the advice that you are getting and finally, you can ask for arbitrage if you are then still not happy. That said, plenty of errors are made, but I don't think the software industry has any right to speak about mistakes made in other fields, our own house has been on fire for the last three decades in that respect and the only thing we've done to deal with it is to avow any responsibility.

deleted 5y ago

[deleted]

saalweachter 5y ago

I think you need to be careful to distinguish between two different kinds of failures of the medical system here. In your anecdote, you suffered a failure to diagnose, and specifically, a failure to diagnose a rare disease. This is unfortunate, and bad, and a problem to try to figure out, but it is a completely different sort of failure than what other people are proposing for HCQ or IVM, that there is a highly effective and inexpensive treatment that the medical establishment is failing to recognize despite apparently having such clear evidence in its favor that people on Facebook can understand it.

beagle3 5y ago
In that story, which is very long and has all kind of hollywood quality twists (and heros, and villains), there was a highly effective and (relatively, ~$10K overall) cheap treatment, where the official treatment was $30K/month with potential for stopping at some point, but most kids are on it for years before they can stop. The diagnostic failure was just the beginning. (And, unlike the HCQ/IVM case, which I don't support and is in general speculative - the guy responsible for the official recommendation was actually convicted for taking bribes from the company making the treatment. I won't divulge any details, because that will de-anonymize me - the disease is rare enough that people in the field know each other and all the cases). p.s: That treatment (in combination) is also used for other, similar diseases, each is rare, but overall it was a lucrative market for the drug company.