Please read my story at Boing Boing about how a woman figured out what caused her migraines. I am always interested in cases where people figure out for themselves how to be healthy. If you have a story like that please contact me.
It has generated a lot of comments. Mark Frauenfelder, who posted it, told me he knew it would generate a lot of comments and one of the first would be “anecdotes are not data”. He was right. Preventive stupidity in action. It tells you something that scientists teach that “anecdotes are not data”, when all major scientific truths, as far as I know, began with a single observation. For example, the discovery of electricity began with a single observation that a dead frog’s leg twitched when touched with a scalpel. Why is something so at odds with reality taught and repeated by scientists, whose job is paying attention to reality? My explanation is human nature: How much we enjoy feeling superior.
The dismissive comments to your post are infuriating me. It’s as if everyone has forgotten, or been brainwashed to forget what science actually is. All they can see now is “science industrial complex” not the actual genuine process.
It’s so strange to me that the whole system has managed to sort of stamp out the type of independent inventor and discoverer activity that is responsible for the largest advances in medicine — the kinds that existed way before the whole complex was even around.
Not only that, but you must have the politically appropriate scientific beliefs (as defined by the complex) at all times otherwise people try to threaten and reject what you say as “not science”. Newton spent a large amount of time dabbling in alchemy and trying to decode the bible for hidden messages… but you know, he did some other interesting things too.
Thanks. I am not yet sure what to learn from all the dismissive comments but I agree there is something importantly bad about them.
I think “anecdotes are not data” should be thought of as meaning more evidence should be pursued, not that the particular example given is wrong.
Sometimes people “discover” a cure for their disease or a way to be healthier and they are in fact mistaken. I’m sure you understand there are lots and lots of people on the internet with wrong ideas about health due to something they think happened to them (an anecdote). In those cases, pursuing more data will reveal the mistaken association.
Whereas in this case, pursuing more data could validate what she learned about migraines. Or not, which is of course the key part. How do we ever learn truths about health unless we are willing to go past the single data points.
And later that very night, I found an example for Seth of someone finding a health solution by personal observation.
Caffeine and dementia.
https://www.tinyrevolution.com/mt/archives/003542.html
Thanks. I am not yet sure what to learn from all the dismissive comments but I agree there is something importantly bad about them.
You know what I think it is? There is this mindless herd rage, bordering on lethality, at people who don’t know their place.
It’s the same impulse that led to hundreds of thousands of people making the most vicious statements about Rebecca Black, the middle-schooler who dared make a music video. People pretended they were enraged by the song, but they were actually enraged because she dared to act like a rock star without having been anointed by the music establishment.
The comments on the migraine article are the same phenomenon. They’re at a higher reading comprehension level, but its still all about class, and the primitive urge to destroy those who don’t cower accordingly.
In the migraine example, I don’t see how Sarah could be “mistaken” about what caused her migraines. She did hundreds of tests.
This article highlights one of the biggest problems with medicine. The girl tried 50 different drugs and they didn’t work. The messed up part is that this is a best case scenario. She was forced to figure out the cause of her migraines. If there was a drug that worked it wouldn’t have been like an antibiotic. You don’t take an antimigraine drug for 2 weeks and then are cured for life. You have to keep taking it and dealing with side effects for the rest of your life. Modern medicine is great at treating symptoms but tends to be poor at finding and treating causes.
After over 20 years of migraines, and after much searching, I finally discovered the reason: aspartame. I never used the sweetener packets, but found aspartame interspersed among the items in my pantry and refrigerator. It’s been almost two years now since I’ve had a migraine. What a relief!
One story of a self-cure would be Jasper Lawrence’s. He went to Africa, infected himself with hookworms, cured his asthma, and started a company selling them.
https://www.asthmahookworm.com/
https://autoimmunetherapies.com/
Another individual who found a self-cure would be that of Gary Rea, who went on the Paleo Diet for a year with amazing results. He is no longer a type II diabetic, his blood pressure has gone from 180/90 to 115/72, he went from 233 lbs. to 160 lbs. and, at 56 years old, his body looks like it did when he was in his 30?s.
https://paleoeater.blogspot.com/
https://www.thepaleodiet.com/
As someone who was raised and trained as a scientist and worked for years in medical reasearch, you are spot on. Though there is more to it than just ego, there are also particular issues in science surrounded by a deep cultural well of buttheadedness around a truth being supressed for some reason. I think of them as fnords, though it’s a bit removed from the original definition. “Things one is not supposed to question or think about”, science has them too.
Some of it is obviously profit-based upon closer inspection, some of it is weirder, like the “central dogma” of molecular biology, so named by Francis Crick because he was trying to point out that it has absolutely no basis in evidence or sense and was in fact a moronic thing to assume. The named assumption is that information only passes from the DNA to the RNA and there is no means other than completely random mutation combined with successful reproduction to change the DNA. Which of course has been disproven in many ways by now.
That one comes in part out of the politicization of science by the communist/capitalist thing, each side tried to warp their science to support their ideology, I heard the story first from a microbiology prof. But my point was, actually thought in science is cluttered up by all sorts of variously motivated PR campaigns against various ideas, old and new, buttheadedness plays into it but there is more going on than that.
You are spot-on about the difference between real science and what currently goes on in medicine. My doctor can not look at my problem like a scientist even if he wants to. I can tell him what happens to me and how to test it, and he can probably think of tests I wouldn’t even know about, but he/she has to work from a script and within the limits imposed by a whole flock of bureaucracies, none of whom have anything to gain by actually helping me. In the end even if he believes me and wants to help, he won’t do the tests that could prove the question because there is no way to bill for it, full stop no appeal.
And yes, looking at the anecdotal and even utterly mundane is exactly where a lot of breakthrough science comes from, and from looking at the places where the current assumptions seem to not actually hold true. The problem lies in how it gets chosen what gets researched, and in the way the industry has warped to game the patent laws. Nothing easier than not funding research and using ‘lack of evidence for efficacy’ as a dismissal.
On the subject of medical miracles: the news is full of them, I know, legitimately miraculous and wonderful things. Science fiction become reality, lives saves and greatly improved. But when I go to the doctor with crippling pain, they genuinely have no way to tell the difference between me and some plausible con looking for opiates for a good time, because the state of the art method for determining my level of pain is to ask me how bad, on a scale of one to ten, I think it is. They don’t even ask me what personal experiences might have formed my scale, that does vary widely, seems like they should care. The world is full of hustlers who are far more plausible telling a complete fabrication than I am being dead honest, medicine really needs a reality check or three, there is really no excuse.
Seriously. They are not really that utterly and completely helpless that they can not come up with one single solitary objective test if they actually tried even a little bit. They have monkeys moving computer cursors with their minds, and do some damn fancy research when trying to improve their ability to sell me things, and they can’t do a single chemical or imaging test to find some evidence of genuine pain meaning something is wrong and a closer inspection is in fact warranted? That should not be passing anyone’s bullshit detector. Look at your medical care as if it were some other service, are they actually even trying to fix what you really want and need fixed? If I don’t sound like a crank yet I will the instant I say “government-backed monopoly”, but that is exactly what we have and exactly what the problem is. I don’t have a grand plan to fix it, I just have seen some of the ways it is broken.
You put it well. Especially: 1. “None of whom have anything to gain by actually helping me.” 2. “Nothing easier than not funding research and using ‘lack of evidence for efficacy’ as a dismissal.”