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RHollerith14y20

Interesting. (Please do not continue to search for refs, but I'd be interested in any tidbits of how you came to the knowledge, e.g., "I read papers on medical procedures as part of my job".)

I am in the first category: I'd accept a 70% risk of death to have the kind of health I would have had if I'd never contracted Lyme disease.

quantropy14y00

I'm not sure how I came to know this - I think I first heard of it over 30 years ago. I've probably read a number of books about risk since then, some of which may have also mentioned the bimodal distribution, but I'm afraid I can't remember one.

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11 Rationality case study: How to evaluate untested medical procedures?

by jimrandomh

28th May 2011

1 min read

11

I'm presently on a flight to the rationality minicamp (hooray for free in-flight wifi!), and the passenger next to me has an interesting story to tell. He suffers from chronic renal failure, which has recently worsened, and is on a flight to Beijing to have an experimental stem-cell based treatment performed at Shijiazhuang Kidney Disease Hospital. His United States doctor, predictably, thinks this idea is crazy; the alternatives would be transplantation or dialysis, neither of which seems appealing. He's not particularly clear on the details, and isn't savvy enough to productively research the issue himself or to generate outcome probabilities. My first reflex, upon hearing this story, was to jump on the internet and spend an hour on PubMed.

There are two interesting questions to consider here. The first is: is getting the experimental treatment a good idea or not? And the second is: is attempting to arrive at an answer to the first question a good idea or not? He is already sufficiently committed that a "no" answer would almost certainly be ignored, unless it had an extremely compelling justification behind it.

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[-]Chala14y40

In this case I'm beyond sceptical. Stem cells are often given to medical tourists as the very words conjure up the idea of miracle cures in peoples minds, when there really is no evidence to think it will be of any clinical benefit (and in fact there is often evidence that it will be harmful).

If we were at the stage in medical science where we could cure chronic renal failure by using stem cells we would have done so in rats, or some other model animal, already - and we haven't yet to my knowledge.

It is likely that the theam that is going to administer the stem cells has no idea of how proper research is conducted, no idea of the basic science of stem cell therapy and no concept of ethics.

For instance, I heard of a case some time ago in which a young child was taken to South America for stem cell treatment after many years of being in a near vegetative state following some sort of damage to his brain. The "scientists" and "doctors", at the clinical promised massive improvement, and every time they flew over to go to the clinic a brain scan would be done - and improvement would be proclaimed. Back in their native USA, however, one of the doctors that had been involved in the childs long term care convinced the family to have a scan done at home - and it was painfully obvious to anyone with any medical knowledge that the therapy had in fact caused massive irrepairable brain damage.

Stem cells aren't a valid experimental treatment for most conditions (if they were, they would actually be offered in first world patients) they are simply a scam.

[-]dee4713y00

to bring to notice the huge fraud in the name of kidney cure, by shijiazhuang kidney disease hospital in china. as soon as u click on a herbal/ natural cure for kidneys, their website opens, and within seconds a doctor comes on a chat window and asks for your condition and test reports. their chat window opens within seconds, day and night. they market a combination therapy of herbal osmosis and stem cell transplant. everyone knows that stem cells have the capacity to regenerate damaged organs.

as there is no cure in the world for kidneys, helpless people fall victims to their bait, as the chat is followed up very well by daily phone calls and mails.

they also claim to have cured 4000 such cases to give u confidence.

on the net they give u a treatment plan between 15,000 to 20,000 usd. once u reach the hospital, after a few checkups, they come back with grim faces and tell u that since u are in the last stage, the treatment plan has to be improved and now it will be 50,000 usd. they did this to all 30 patients who were in with me. people get scared and take loans to somehow manage 50,000 usd. those who cant are given a lower package which they say will take a few extra months to cure.

in the hospital, they put on a great act, checking on you 3 times a day, with very serious doctor like faces. then u see a dramatic improvement in 2 or 3 patients, who are actors, hired by the hospital on commission. these guys put on a great act, the hospital throws a party for these guys to celebrate their improvement and they give speeches about their drastic improvement, which is video recorded by the hospital staff. those who were in 2 minds about the treatment, because of the inflated fees, falls for these speeches and then enrolls to the programme. they ask for the payment not in the hospital name, but an individual named lui huizhi, so it cant be traced back to them. not that they are afraid, as chinese govt supports them. then they make u sign an agreement which is all in chinese and u dont understand a word of it, but the interpreter tells u its a mere consent to put stem cells. in my group of 30, i have been in active touch with at least 12 people who are all in shock as none of them have improved even 1 percent, most have deteriorated though. there is one guy from serbia who sold his house to save his son, and his son has gone worse in condition now and this guy has gone into depression. the 3 guys who improved dont answer their e mails, as their act is over and they have vanished.

the hospital gives u dozens of testimonials but they cant give u even one persons email or phone number to check if they have improved.

i feel its my duty to warn people who are already suffering, pls dont fall for the cheap tricks of this hospital and save your hard earned money for a transplant.

[-]quantropy14y30

The risks people are willing to take to live a 'normal' life have a surprisingly bimodal distribution, with some accepting say 70% risk of death, whereas others only being willing to accept a minimal risk (I've been searching for references to studies showing this, but haven't been able to find any via Google). I think that lesswrongers are likely to fall into the second category, especially in a case like this where dialysis/transplantation may be tedious, but they don't exclude the possibility of undergoing the stem cell treatment in a few years time, when the risks have been ironed out.

[-]RHollerith14y20

Interesting. (Please do not continue to search for refs, but I'd be interested in any tidbits of how you came to the knowledge, e.g., "I read papers on medical procedures as part of my job".)

I am in the first category: I'd accept a 70% risk of death to have the kind of health I would have had if I'd never contracted Lyme disease.

[-]quantropy14y00

[-]RHollerith14y00

Thanks.

I am now curious in what other traits or values correlate with someone's place in this bimodal distribution.

[-]quantropy14y00

I still haven't been able to find any of the early research which I remember, but searching for "standard gamble" on google brings up lots of related results

[-]InquilineKea14y20

Basically, I ask myself "how reversible are the effects?" If they're reversible, then there's usually no reason not to do them.

Death, of course, is the worst irreversible effect. So before I take any drug, I always scour the research literature for relative mortality risks and LD50 doses. I sometimes come across interesting papers too (like, papers describing what happened to various people after they overdosed themselves on bupropion and modafinil).

With procedures, I'd imagine that I'd do the same thing, although it's harder to google results for specific medical procedures. That being said, I haven't had the need for any procedure yet.

[-]lsparrish14y20

It sounds like a good idea to me, not necessarily because it is his best chance of survival but because participating in this kind of research is likely to benefit others down the line. (Admittedly, that's the kind of thing I can more easily say about a random stranger than I would be able to say about a close friend or family member.)

I would encourage him to try and get a cryonics plan in place if at all possible, but the act of participating in stem cell research itself seems like a net positive.

[-]Chala14y10

It is likely going to be a net negative for society as I doubt that any information of value can be derived from this sort of experiment in humans. There is still a lot of animal research that has to be done before human trials can bring anything useful to the table. To my knowledge, chronic renal failure isn't even close to being treatable usign stem cells in rats or any other model animal.

It is likely that the team of "scientists" in this case are a bunch of phonies with know comprehension of the basic science behind stem cells, or any serious training in research.

[-]wedrifid14y10

the alternatives would be transplantation or dialysis, neither of which seems appealing.

Transplantation is available? That option jumped out as far more attractive. Simply because the stem cell treatment, even if it does work, is more likely to be just a little bit helpful.

And the second is: is attempting to arrive at an answer to the first question a good idea or not?

Yes. I would focus on researching the risks more so than the potentially optimistic outcome. The doctor just doesn't have the same incentives as the patient and would likely reject the non-mainstream treatment regardless of how promising it was.

[-]darius14y00

I know someone who was on dialysis while waiting for a transplant. It was really hard on them, and for a while it looked like they might not pull through. I don't know how common such an experience is.

[-]wedrifid14y00

I know someone who was on dialysis while waiting for a transplant. It was really hard on them, and for a while it looked like they might not pull through. I don't know how common such an experience is.

I am not sure either but reducing the need for dialysis was certainly what I had in mind when considering 'other than just lives saved' benefits from having spare organs floating around.

[-]zntneo14y00

I would say generally that for any treatment that hasn't been tested the probability that it doesn't work is quite low because of the wide number of ways to be wrong vs ways to be right. Your probability estimate will probably rise (though how much i'm not sure) if it accords with basic science knowledge.

[-]Paul Crowley14y00

Could people say more about what they hope to get out of learning more about cryptography?

[-]gwern14y00

What relevance does that have to experimental meds?

[-]Paul Crowley14y00

None, how the hell did this comment end up here? Sorry.

[-]InquilineKea14y00

Hahaha, well, http://www.cracked.com/article_19218_6-insane-diy-surgeries-you-wont-believe-actually-worked.html just came out

Just ask Henry Marsh, a British neurosurgeon who travels to Eastern Europe on a regular basis, and just gravitates naturally towards potential brain surgery the way Batman gravitates towards criminals. One day, he found himself in a familiar, brain surgeony situation -- a woman with a tumor that would kill her if not removed -- only sans the equipment, since at the time, the Ukraine wasn't too hot on state-of-the-art medical gear, and were going through more of a state-of-the-tool-shed phase. We'd imagine this is the worst case scenario that flashes through a doctor's minds when someone shouts, "is there a doctor in the building?" For Marsh, it just meant he had to improvise with what he had. He drilled through the woman's skull and removed the tumor using only some local anesthetics and a $65 Bosch cordless drill he happened to have with him for some reason. When the battery went flat, he dug in with his hands.

[-]dee4713y-10

as there is no cure in the world for kidneys, helpless people fall victims to their bait, as the chat is followed up very well by daily phone calls and mails.

they also claim to have cured 4000 such cases to give u confidence.

in the hospital, they put on a great act, checking on you 3 times a day, with very serious doctor like faces. then u see a dramatic improvement in 2 or 3 patients, who are actors, hired by the hospital on commission. these guys put on a great act, the hospital throws a party for these guys to celebrate their improvement and they give speeches about their drastic improvement, which is video recorded by the hospital staff. those who were in 2 minds about the treatment, because of the inflated fees, falls for these speeches and then enrolls to the programme. they ask for the payment not in the hospital name, but an individual named lui huizhi, so it cant be traced back to them. not that they are afraid, as chinese govt supports them. then they make u sign an agreement which is all in chinese and u dont understand a word of it, but the interpreter tells u its a mere consent to put stem cells. in my group of 30, i have been in active touch with at least 12 people who are all in shock as none of them have improved even 1 percent, most have deteriorated though. there is one guy from serbia who sold his house to save his son, and his son has gone worse in condition now and this guy has gone into depression. the 2 guys who improved dont answer their e mails, as their act is over and they have vanished.

one guy from malaysia, with a very slight kidney disease, could not survive the stem cells and passed away. they completely denied his death and didnot allow anybody near the howling wife. these are not doctors, they are quacks and criminals who talk more about money than medicine all day the hospital gives u dozens of testimonials but they cant give u even one persons email or phone number to check if they have improved.

i feel its my duty to warn people who are already suffering, pls dont fall for the cheap tricks of this hospital and save your hard earned money for a transplant or try homeopathy.

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