So-called "Science" and Medical Ethics
There used to be a Yahoo Group called Autism-Mercury. I was introduced to it when someone who knew me from TAGMAX asked me a question and I made an ass of myself.
TAGMAX is a gifted homeschoolers list where my emails were seemingly "popular" at one time -- at least with a vocal minority. Meanwhile other people openly hated on me, if only out of jealousy over the attention I was getting.
I found that aggravating because I'm not the attention-monger people presume me to be. I answered questions to be helpful, not to "get attention."
Anyway, this woman asked me what I thought of biomedical approaches to things like Autism and I basically blew it off entirely, thereby revealing that I knew nothing of the topic.
Some people from TAGMAX knew me well enough to know you can argue with me -- in the sense of debate me, not in the sense of fight with me -- and I am perfectly willing to admit when I'm wrong. So she was extremely nice about it and told me this was really helping her child and -- long story short -- she gave me a list of email lists she followed and said that the Autism-Mercury list was the best of the bunch.
So I joined the list in order to educate myself so I wouldn't make an ass of myself again should someone ask me questions since some people did respect me and my advice, so I felt I had a responsibility to at least know what people were talking about.
The Autism-Mercury list was both a terrific source of useful info and also a hotbed of antivaxxers and conspiracy theorists. As someone who studies social stuff, I was sympathetic to why these people voiced the strong opinions they voiced about some things but I also knew this was the wrong way to accomplish what they desired.
It was through this list that I met Dr. Andrew Hall Cutler -- aka "Andy" -- who was a "Dr." in the sense of had a PhD in Chemistry, not a medical doctor. He wrote some books about mercury poisoning and chelation and he did consulting work to help people do chelation properly because most doctors have no idea how to do proper chelation even though it is the only proper means to effectively treat metal poisoning.
He made the point once that medical ethics is basically an oxymoron and my participation on that list no doubt got me to thinking about how we compensate doctors and drug companies (etc) and how that contributes to a world in which we increasingly have chronically ill people on drugs for life without actually FIXING their issue.
We have all these miracles of modern medicine but our monetization strategy means the medical industry is not paid to fix your problem. It's paid to TREAT your problem and that means doing something that OBVIOUSLY (or seemingly) HELPS without CURING you is the best way to pay the bills.
He also talked about medical ethics and drug studies or something and I think he said basically that if you find X helps, it's really not ethical to keep giving a placebo to half your participants. You should promptly treat ALL of them with the thing that actually helps if you are an ethical person who actually cares about your patients.
It's a little more complicated than that, but there are TONS of horrifyingly unethical medical studies, from what the Nazis did for medical experiments to the Tuskegee Syphilis Study where Black American men were DENIED treatment while being lied to about it so a doctor could see if Blacks went through the same stages of disease progression as Whites.
If you want to do medical "science" on HUMANS, those kinds of horrifying experiments are what that looks like. You treat human beings like the rats and rabbits and such that we breed with defects and torture for medical science to see what happens.
What I do will never catch on because it's not "science" and I'm happy to not be a part of any of that stuff, thank you.
And, no, I am not a fan of the studies with consent and placebos. I'm not for at least two reasons.
First, the assumption that "sugar pills" or similar do nothing does NOT fit my firsthand experience with life. Sugar takes the edge off pain, it mitigates mood issues, etc. and it doesn't take a LOT of sugar to have an effect.
So when you tell me "We gave sugar pills to depressed people and their mood improved" what I hear is "Sugar is scientifically proven to do what Doreen Traylor already knows from firsthand experience it does." and everyone else on the internet is like "NO. It's NOT enough SUGAR to have an impact and blah blah blah." which just aggravates me.
The other reason is that when I was on CF lists, people with CF would pop in to say "Do you know of any non-drug treatments for yeast? I'm on this yeast medication and I need to get off of it to qualify for this STUDY I want to participate in!"
So, that's problematic for two reasons. The first is that medical experimenters are too eager to treat people with genetic disorders like human guinea pigs because our lives suck anyway and no one cares about us, so WHY NOT??? And the second is that if some percentage of your patients are changing their drug regimen BEFORE getting on your study to QUALIFY for your study, your study doesn't say what you THINK it says.
Their dramatic improvement may not be because of your experimental drug. It may be because they are using a NON DRUG yeast treatment now to get into your study.
Last, back in the day doctors went to your HOUSE with their little black bag and could see with their own two eyes how you lived. This informed their treatment of you without them having to necessarily ask any rude questions about "So, how CLEAN is your house?" or whatever and NOW we treat people like specimens in a petri dish, as if their medical issues are NOT the product of their lifestyle -- and NEVER MIND that study after study after study all say "Diet and lifestyle are MAJOR factors in ALL deadly diseases!"
So I have no hope at all of "proving" that my mental models hold water or whatever. You aren't going to do medical studies of the things I think work because there's no money in it. What I do will NOT result in some new expensive drug for someone to get rich and famous with.
It's too practical, it makes too much sense and it's too complicated.
People want a simple answer. They want to pop a pill and have their infection die. They don't want to be told "Track everything you eat and keep a journal and maybe in SIX MONTHS you can see blah blah blah."
Anyone using this info is never going to admit it. They don't want to become a target -- like I am -- of random internet strangers being horribly abusive assholes to them and telling them they are NUTS, it's "placebo effect," asking "Where are The Studies?" etc ad nauseum.
If me getting well with "placebo effect" is what's going on here, then you should fear the hell out of me. I must have a more powerful mind than Darth Vader who killed people with the force.
I don't think that's what's going on. Like AT ALL.
But people who imagine themselves to be "sciency" have been dismissing me with bullshit assertions of that sort for YEARS.
Honestly, it would make more sense to accuse me of being a teen living in my mommy's basement and making shit up whole cloth for funsies -- except I've been doing this over 20 years, so I wouldn't be a teen anymore. And I honestly do not understand people who are so incapable of basic logic that they hear that someone with CF is getting better with home remedies and their dismissive position is "Must be PLACEBO EFFECT!"
Um, yeah. When did you get your lobotomy? Just curious.
TAGMAX is a gifted homeschoolers list where my emails were seemingly "popular" at one time -- at least with a vocal minority. Meanwhile other people openly hated on me, if only out of jealousy over the attention I was getting.
I found that aggravating because I'm not the attention-monger people presume me to be. I answered questions to be helpful, not to "get attention."
Anyway, this woman asked me what I thought of biomedical approaches to things like Autism and I basically blew it off entirely, thereby revealing that I knew nothing of the topic.
Some people from TAGMAX knew me well enough to know you can argue with me -- in the sense of debate me, not in the sense of fight with me -- and I am perfectly willing to admit when I'm wrong. So she was extremely nice about it and told me this was really helping her child and -- long story short -- she gave me a list of email lists she followed and said that the Autism-Mercury list was the best of the bunch.
So I joined the list in order to educate myself so I wouldn't make an ass of myself again should someone ask me questions since some people did respect me and my advice, so I felt I had a responsibility to at least know what people were talking about.
The Autism-Mercury list was both a terrific source of useful info and also a hotbed of antivaxxers and conspiracy theorists. As someone who studies social stuff, I was sympathetic to why these people voiced the strong opinions they voiced about some things but I also knew this was the wrong way to accomplish what they desired.
It was through this list that I met Dr. Andrew Hall Cutler -- aka "Andy" -- who was a "Dr." in the sense of had a PhD in Chemistry, not a medical doctor. He wrote some books about mercury poisoning and chelation and he did consulting work to help people do chelation properly because most doctors have no idea how to do proper chelation even though it is the only proper means to effectively treat metal poisoning.
He made the point once that medical ethics is basically an oxymoron and my participation on that list no doubt got me to thinking about how we compensate doctors and drug companies (etc) and how that contributes to a world in which we increasingly have chronically ill people on drugs for life without actually FIXING their issue.
We have all these miracles of modern medicine but our monetization strategy means the medical industry is not paid to fix your problem. It's paid to TREAT your problem and that means doing something that OBVIOUSLY (or seemingly) HELPS without CURING you is the best way to pay the bills.
He also talked about medical ethics and drug studies or something and I think he said basically that if you find X helps, it's really not ethical to keep giving a placebo to half your participants. You should promptly treat ALL of them with the thing that actually helps if you are an ethical person who actually cares about your patients.
It's a little more complicated than that, but there are TONS of horrifyingly unethical medical studies, from what the Nazis did for medical experiments to the Tuskegee Syphilis Study where Black American men were DENIED treatment while being lied to about it so a doctor could see if Blacks went through the same stages of disease progression as Whites.
If you want to do medical "science" on HUMANS, those kinds of horrifying experiments are what that looks like. You treat human beings like the rats and rabbits and such that we breed with defects and torture for medical science to see what happens.
What I do will never catch on because it's not "science" and I'm happy to not be a part of any of that stuff, thank you.
And, no, I am not a fan of the studies with consent and placebos. I'm not for at least two reasons.
First, the assumption that "sugar pills" or similar do nothing does NOT fit my firsthand experience with life. Sugar takes the edge off pain, it mitigates mood issues, etc. and it doesn't take a LOT of sugar to have an effect.
So when you tell me "We gave sugar pills to depressed people and their mood improved" what I hear is "Sugar is scientifically proven to do what Doreen Traylor already knows from firsthand experience it does." and everyone else on the internet is like "NO. It's NOT enough SUGAR to have an impact and blah blah blah." which just aggravates me.
The other reason is that when I was on CF lists, people with CF would pop in to say "Do you know of any non-drug treatments for yeast? I'm on this yeast medication and I need to get off of it to qualify for this STUDY I want to participate in!"
So, that's problematic for two reasons. The first is that medical experimenters are too eager to treat people with genetic disorders like human guinea pigs because our lives suck anyway and no one cares about us, so WHY NOT??? And the second is that if some percentage of your patients are changing their drug regimen BEFORE getting on your study to QUALIFY for your study, your study doesn't say what you THINK it says.
Their dramatic improvement may not be because of your experimental drug. It may be because they are using a NON DRUG yeast treatment now to get into your study.
Last, back in the day doctors went to your HOUSE with their little black bag and could see with their own two eyes how you lived. This informed their treatment of you without them having to necessarily ask any rude questions about "So, how CLEAN is your house?" or whatever and NOW we treat people like specimens in a petri dish, as if their medical issues are NOT the product of their lifestyle -- and NEVER MIND that study after study after study all say "Diet and lifestyle are MAJOR factors in ALL deadly diseases!"
So I have no hope at all of "proving" that my mental models hold water or whatever. You aren't going to do medical studies of the things I think work because there's no money in it. What I do will NOT result in some new expensive drug for someone to get rich and famous with.
It's too practical, it makes too much sense and it's too complicated.
People want a simple answer. They want to pop a pill and have their infection die. They don't want to be told "Track everything you eat and keep a journal and maybe in SIX MONTHS you can see blah blah blah."
Anyone using this info is never going to admit it. They don't want to become a target -- like I am -- of random internet strangers being horribly abusive assholes to them and telling them they are NUTS, it's "placebo effect," asking "Where are The Studies?" etc ad nauseum.
If me getting well with "placebo effect" is what's going on here, then you should fear the hell out of me. I must have a more powerful mind than Darth Vader who killed people with the force.
I don't think that's what's going on. Like AT ALL.
But people who imagine themselves to be "sciency" have been dismissing me with bullshit assertions of that sort for YEARS.
Honestly, it would make more sense to accuse me of being a teen living in my mommy's basement and making shit up whole cloth for funsies -- except I've been doing this over 20 years, so I wouldn't be a teen anymore. And I honestly do not understand people who are so incapable of basic logic that they hear that someone with CF is getting better with home remedies and their dismissive position is "Must be PLACEBO EFFECT!"
Um, yeah. When did you get your lobotomy? Just curious.
