Speculations on Information flow and Covid

Entering speech-to-text experiment. Please let me know in the comments what you think of this and the previous text to speech experiment. Is it any different from my normal writing style with my fingers? Since this is our second experiment, I’ll be in a little better at using this technology. One thing I noticed last time was that I was talking too fast for the technology to really keep up with, and so in the end I had some very garbled paragraphs that I had to completely discard because I couldn’t tell what they were supposed to say anymore. I’m sure the app was doing its very best to figure out what I was saying, but this time I’m going to speak more slowly–I know you can’t tell that on your end, but I do wonder if it does something to the writing process.

Much as I would like to talk about something other than corona, when everyone is talking about corona, well, you talk about corona. Watching how people react to this pandemic has been very interesting to watch (the pandemic itself, of course, is awful). I can’t discuss corona from the point of view of a doctor or an epidemiologist or a virologist because I’m not one of these things. I can discuss it from my point of view as a lay person, watching the the social dynamics unfold. Early on in China, we had a few doctors noticing that there was an unusually bad flu and pneumonia season going on. I believe the first doctor reported on this was actually an ophthalmologist–an eye doctor–not a not an emergency, not a flu or pneumonia doctor. I’m not sure how this opthamologist actually knew that their bunch of pneumonia was going on–he must have been talking to other doctors, maybe some doctor friends of his. This means he wasn’t really the first person to notice that something bad was happening; he was just the first person to try to convey the information more broadly, perhaps because he already perceived it as well-known among people he knew.

He reported this in, I think, a doctor-based chat group he was in and and then, as we know, he was censored. Interestingly, he wasn’t harshly sensor by the CCP. It’s not like some big censoring agency collects all the chat log information and automatically sensors them, or automatically reads everything produced in China. Somebody actually in his chat must have reported him to the authorities. He reported him for being sensationalist, and this report made its way up the chain of command to the police and then they came and had a talking to him and told him not to raise any more alarms. So I don’t even know if the police had actually looked into what he was saying in any substantive way at that time, or if they were just going on the authority of the guy who’d complained about it. “If someone complained about it, it must be a problem,” kind of thinking.

And I’ve seen people even in the US defending the censors. They’ve compared it to yelling fire in a crowded theater–except, the thing is, the theater was on fire.

It’s reasonable to say “don’t yell fire in a crowded theater” if the theater is not on fire, but first you have to make sure the theater is not actually on on fire. If the theater is on fire and you tell people not to yell fire, then everybody dies in a fire.

And this is the situation we have now in Wuhan and other parts of the world: things got way further out of control than they would have if the doctor had been able in the first place to report what he was seeing to the government or to the right authorities. If he’d  been able to get support instead of being told “hey, you’re being alarmist,” then things would have gone a lot better. Unfortunately, sometimes you have to be alarmist to raise an alarm.

I feel like I’ve had the same pattern of conversation many times–take Galileo. We can talk about Galileo’s theories, whether they were right or wrong, but the fact is Galileo did end up under house arrest, possibly for being rude to the pope and for having theories about the way the universe works that the pope didn’t like.

Here’s where people jump in and argue that Galileo’s theories were wrong, therefore he deserved to be put under house arrest. Utter bullshit. You don’t put people under house arrest just because they have funny theories about the tides. (Disclaimer for the confused: Galileo claimed that the tides were proof that the Earth was sloshing around in space. The Earth does move through space, but the tides are not evidence of this.)

If you want to have scientific inquiry, some of your scientists will come up with funny theories, and if you put every scientist who comes up with a wrong theory under house arrest, you will very quickly run out of scientists. Was Galileo a jerk? Was he rude? I don’t know, but we don’t put people under house arrest for that, either. If you want people who can look at the established orthodoxy, who can look at authors like Galen and Aristotle who’ve been revered for about a thousand years, and proclaim that they’re wrong, then I think you have to accept that those people tend to be, by nature, cranky misanthropes.

If you limit your scientific inquiry only to people who are polite and deferential and never in their whole lives are rude to people (especially people whom they think are imbeciles), you’re not going to get a lot of science. And if you limit your alarm system about pandemics to people who can kiss the right ass while never sounding alarmed in any way, then you’re just going to end up dead.

Looking at the way information has spread, it’s been very striking how may “official” outlets were, early on, exceedingly wrong, eg:

Fox News? Wrong. CNN? Probably wrong. My local news network? Useless. Vox? Wrong. Official British medical experts who came up with the “herd immunity” plan? Wrong. CDC? Run by morons.

At least in the early stages, these folks seemed to know less about corona and its spread than, as I put it, random nobodies on Twitter. I know my little corner of the internet is interested in China–I follow a 3D printing account based in China, for example–I think people who are interested in technology are more likely to have contacts in their information orbit who are either in or reading Chinese publications, because there’s a lot of technological development going on in China, not to mention being home to a ton of technological industry. And of course some people are fascinated by autocratic governments like China (or just like the culture), Nick Land, for example, lives in China. It’s not just right-wingers, either: I know plenty of more liberal people who pay attention to things happening in China. I think it has more to do with being interested in technology or culture, and of course diseases.

I used to have some very nice theories about liberals and conservatives being split by their emotional reactions to disease, but the data in this pandemic is not supporting that.

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The NYTimes has this poll, but broken down by state so you can compare how concerned Republicans in New York are vs Democrats in New York, but the result is the same: in every state, Democrats are much more concerned than Republicans.

What’s the big difference between this outbreak and ebola? Speculatively:

Ebola: makes you explode, terrifying
Corona: suffocates you. Slightly less visually graphic, but still awful.
Ebola: Africa. Corona: China.
Ebola: quarantine would affect mostly people returning from Africa
Corona: quarantine affects everyone
Ebola broke out during Obama’s administration, so Fox News hyped it up to show how Obama wasn’t doing enough to protect us
Corona broke out during Trump’s admin, so Fox News has been downplaying it so Trump doesn’t get blamed.

Operating theory: where you get your news from matters. Those of us who get our news from the internet were plugged into Chinese happenings (not just internet racists). Those of us who get our news from the TV, by contrast, were less informed (even the TV racists).

Or maybe normies just aren’t as concerned about disease.

Whatever was going on, for whatever reasons, people on the internet were talking about the situation in Wuhan back in January. It was difficult to get trustworthy numbers, but it was pretty easy to get very concerning reports about things like “entire cities shut down.” At the time, we didn’t know whether China was overreacting or not, and we didn’t know whether the virus would spread or not. We’ve had previous concerning viruses like Ebola, SARS, MERS; these were bad viruses, but they never spread that well. (Technically, Covid is a SARS virus.)

The early stages in Wuhan were concerning because the CCP was definitely reacting like this was a huge deal, and this is coming from a government that has not historically acted like it has a huge concern for human life and well-being (at least from the outside perspective, eg, things like the Great Leap Forward killed millions of people,) but that makes it all the more concerning. If a government that doesn’t normally seem to care whether people live or die is suddenly concerned that people are going to die, you get worried.

(It may be that the Chinese government has changed a lot in its concern for human life since the Cultural Revolution and now puts in more effort to take care of its people, but that’s waiting into the weeds of Chinese policy and I don’t really know enough about China to comment coherently.) My point is just that the Chinese response certainly looked concerning.

It was concerning enough that very online people in the US were starting to plan ahead for the pandemic shutdown back in January. For example, I have talked to people who said they had started stocking up on food gradually, just buying a little bit extra each time they went to the store, a bag of rice here, a few cans of soup there, etc. This is a sensible way to do it, because if corona had turned out to be nothing, they you’ll eat the food eventually, and if there is a quarantine, you won’t be caught flat-footed. But most people simply ignored the news back in January–I think most people weren’t even aware that anything was going on in China.

Meanwhile, the reaction from governments and governmental bodies was much more muted. It’s been amazing to watch official medical folks working for the British government come out with ideas like “let’s just go for herd immunity,” which any idiot could have told you was terrible terrible idea. At that point, we had the examples of Iran and Italy in addition to China, so there’s really no excuse for proposing this terrible idea. Being ignorant about what an absolute disaster the Italian hospitals were at that point seems like almost willful ignorance, which is rather frightening.

Unfortunately the same thing is true here in the US. The CDC completely flubbed its early response to Corona. I’ve read a few of the emails released from the CDC, and I don’t see a lot of malice in these documents; I simply see a slow-moving organization that can’t get its act together and doesn’t realize how fast it needs to act. Some of this is probably because most of the health problems in the US, prior to Corona, were slow-moving problems. Our biggest issues these days are things like obesity and heart disease, conditions that will only kill you after multiple decades. The only major new communicable disease we’ve had is AIDS, which also takes years to kill you and hasn’t been a huge deal since the 90s. (You also generally have to be involved in some specific activities to catch AIDs. You can catch corona, by contrast, just by breathing.) So the CDC has not had to actually deal with a new, fast-spread epidemic disease in a very long time (if ever) and weren’t ready to act quickly. For example, they tried to deploy a digital questionnaire to airports for screening international arrivals, but the questionnaires had major problems, like an inability to save the information entered. Unfortunately, “predicting pandemics” and “coding questionnaires” are two different skillsets.

I think these people working for the CDC were probably watching ordinary TV news, which hasn’t done a great job of getting on the ground information about what’s going on with corna in different countries–CDC employees aren’t magic, after all. They have to get information from somewhere, and most of them are probably ordinary people who watch ordinary sources. If you watch MSNBC and MSNBC is not airing frontline reports from inside Chinese or Italian hospitals, then you have to go on YouTube to see videos of people dying in the hallways of Italian hospitals (maybe that’s not even on YouTube anymore. Maybe you have to go to LiveLeak). If you’re not the kind of person to seek out this information in the first place, or maybe you’re not in a group of people online who are talking about it, then you might not hear about it. It’s possible that maybe these CDC guys really just did not realize how serious this is and how fast they needed to act. They’re watching the media for information, and meanwhile the media is taking its cues from the CDC, and the whole thing becomes a circle with insufficient “official” sources of information.

As I’ve joked, early on you could have gotten better information from some random guy on Twitter named something like AnimeNaziTits999 than from the official government websites, but the CDC obviously can’t go getting its information from random anons. I can, because I’m just a random person with a blog, but the CDC has to get its information from official sources, or at least sources that don’t have really embarrassing names. The way some information sources are designated “official” is interesting, too. Sometimes that works–sometimes you really need to go to the official experts. For example, if you want to know about quantum thermodynamics, it’s really best to find an actual professor or read a real textbook on the subject, rather than listen to random lay people. People who haven’t put a lot of effort into learning quantum thermodynamics tend not to know anything about it (I don’t know anything about it, either), but there’s a ton of feel-good woo bullshit on anything related to “quantum.”

By contrast, there’s clearly no official route to get information from Wuhan, China, (or Italy) to the CDC–or if there are official routes, they have numerous choke points where people are suppressing information.

It’s not just China that’s suppressing information. I noticed the official news here in the US, until very recently, has had very little coverage of what’s actually been going on at the hospitals. I understand why we didn’t get much information about what was happening in Wuhan hospitals, but what about Italian hospitals? Our media can bring us a drone footage of migrants marching through Mexico, they can get into the front lines of refugees trying to cross from like turkey to Greece, they can even get embedded in military operations in places like Afghanistan or Iraq, but they couldn’t get into an Italian Hospital.

I don’t believe that for an instant.

I think somebody didn’t want this information getting out. Not necessarily because they’re evil, scheming people, but for the same reasons that the police didn’t want that doctor talking in China: they didn’t want people to be alarmist. Or they just weren’t set up to write articles on the subject. Clearly the New York Times was ready to write articles about Catholic highschool students who smiled awkwardly at Native American activists, but they weren’t ready to write articles about pandemics overwhelming Italian hospitals.

So we end up with very strange reports. We get told that in Spain they’ve commandeered ice rinks to store the bodies. That’s pretty graphic, but the net effect is like a media blackout on was actually going on in hospitals in the US.

Or perhaps the doctors don’t want things to reflect badly on their hospital, or are too busy to go pursuing media contacts. As an acquaintance pointed out, it’s very normal for employees to not be allowed to speak directly to the media about their jobs. So in China they have centralized censorship and in the US we have decentralized censorship. Great. Huge improvement.

But even if doctors can’t say much, you’d think media personnel who pride themselves on their investigative journalism heritage as the descendants of Woodward and Bernstein would say, “screw non-disclosure, I’m taking a camera down ER.” Folks who could get themselves embedded in a war ought to be able to manage an Italian ER, but I guess not.

We needed to know just how bad this was back in January. We needed to be making plans in February. At that point, people were still playing games and writing articles about how the flu was a bigger deal than Covid. The CDC needed to be raising the alarm and going on full alert, yelling that this was going to be a huge problem, but I don’t think they realized just how bad it was going to be, because they didn’t have the right information because their information chain, while normally good, wasn’t going through the right people and there were too many people with choke points on crucial information. We’ve got too many HR managers, too many PR guys at the hospitals telling people not to talk with the press, and too many people in the press saying that random anons on the internet are not valid sources of medical information (even though many of these folks on the internet are actually epidemiologists, virologists, doctors, etc).

An this has been happening in tandem with attempts by different organizations like Google, Twitter, and Facebook to crack down on the “invalid” information sources. Censorship, basically. Google has changed parts of their search algorithm to decrease results from blogs and increase results from more official websites, for example (before you run off to Duck Duck Go, I don’t think my blog is even indexed on Duck Duck Go). Shortly before corona really blew up, the social networks were debuting a beta program for identifying “fake news.” We can just imagine in a case like this where there has been a lot of incorrect information just because it’s a developing situation and we don’t know what’s going on yet, (we may never know how many people actually died in Wuhan) many legitimate news stories could get censored. Trying to weed out all of the fake news puts a damper on the real news and too many real things will get labeled as fake because we don’t know they’re real, yet. The real is in the future; it’s still developing. We don’t know what it is, yet. Too many real stories will sound, like the ophthalmologist raising the alarm in Wuhan, like a guy yelling fire in a crowded theater when the theater is actually on fire.

This is why I am against censorship and in favor of letting people run around saying dumb things, like that the tides prove the Earth. Yes, Galileo was wrong–and yet, the Earth moves.

The history of civilization is the history of plague

 

coronaweather
Map of coronavirus outbreaks vs temperature, from Razib’s article, “CoViD-19 and its Weather Dependency”

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SARS-CoronaVirus-2, aka SARS-CoV-2, aka Coronavirus, aka Corona Virus Disease, AKA CoViD-19, is only the latest in a long list of pandemics to travel the Silk Road from Asia to Europe (and back again).

The biggest plague in recorded history, often referred to simply as “The Plague,” was the  Black Death or Bubonic Plauge, caused by the yersinia pestis bacterium. Pestis killed over 200 million people, most of those during its famous European Tour between 1347-1353, but was actually still killing millions of people even in the early 20th century. The Third Pandemic, as the most recent outbreak is known, began in Yunnan, China in 1855, killed 10s of millions in China and India, spread to California (yersinia is now actually endemic to the fleas that infest prairie dogs in the American West,) and Africa, and was only declared over in 1960, when casualties dropped below 200 per year.

The bubonic plague ended because we can kill it with penicillin. The plague began in stone-age farming communities near the Black Sea, known as the Cucuteni-Trypillia culture, around 5500-2750BC. This was a lovely region with some of the world’s largest concentrations of humans and animals:

The majority of Cucuteni–Trypillia settlements consisted of high-density, small settlements (spaced 3 to 4 kilometres apart), concentrated mainly in the SiretPrut and Dniester river valleys.[3] During the Middle Trypillia phase (c. 4000 to 3500 BC), populations belonging to the Cucuteni–Trypillia culture built the largest settlements in Neolithic Europe, some of which contained as many as 3,000 structures and were possibly inhabited by 20,000 to 46,000 people.[4][5][6]

The culture thus extended northeast from the Danube river basin around the Iron Gates to the Black Sea and the Dnieper. It encompassed the central Carpathian Mountains as well as the plains, steppe and forest steppe on either side of the range. Its historical core lay around the middle to upper Dniester (the Podolian Upland).[2] During the Atlantic and Subboreal climatic periods in which the culture flourished, Europe was at its warmest and moistest since the end of the last Ice Age, creating favorable conditions for agriculture in this region.

As of 2003, about 3,000 cultural sites have been identified,[7] ranging from small villages to “vast settlements consisting of hundreds of dwellings surrounded by multiple ditches”.[16]

The inhabitants were involved with animal husbandryagriculturefishing and gatheringWheatrye and peas were grown. …

Their domesticated livestock consisted primarily of cattle, but included smaller numbers of pigs, sheep and goats. There is evidence, based on some of the surviving artistic depictions of animals from Cucuteni–Trypillia sites, that the ox was employed as a draft animal.[31]

In short, the Cucuteni-Trypillia are the most important culture you’ve never heard of:

Although this culture’s settlements sometimes grew to become some of the largest on earth at the time (up to 15,000 people), there is no evidence yet discovered of large-scale labor specialization. Their settlements were designed with the houses connecting with one another in long rows that circled around the center of the community. …

Although trade was not likely necessary, archaeological evidence supports the theory that long-distance trade in fact did occur. One of the clearest signs of long-distance trade is the presence of imported flint tools found at Cucuteni-Trypillia settlements.

Indeed, the Cucuteni-Trypillia saltworks located at the brackish spring at LuncaNeamţ County, Romania, may very well be the oldest in the world.[5] There is evidence to indicate that the production of this valuable commodity directly contributed to the rapid growth of the society.[6] This saltworks was so productive that it supplied the needs of the entire region. For this to happen, the salt had to be transported, which may have marked the beginning of a trade network that developed into a more complex system over time.[7]

The Cucuteni-Trypillia people were exporting Miorcani type flint to the west even from their first appearance. The import of flint from Dobruja indicates an interaction with the Gumelniţa-Karanovo culture and Aldeni-Stoicani cultures to the south. Toward the end of the Cucuteni-Trypillia culture’s existence (from roughly 3000 B.C. to 2750 B.C.), copper traded from other societies (mostly from the Gumelniţa-Karanovo culture copper mines of the northeastern Balkan) began to appear throughout the region, and members of the Cucuteni-Trypillia culture began to acquire skills necessary to use it to create various items. Along with the raw copper ore, finished copper tools, hunting weapons and other artifacts were also brought in from other cultures.[2] In exchange for the imported copper, the Cucuteni-Trypillia traders would export their finely crafted pottery and the high-quality flint that was to be found in their territory, which have been found in archaeological sites in distant lands.

The Cucuteni-Trypillia farmers lived on the edge of the Eurasian Steppe and interacted with the Yamnaya, nomadic herdsmen otherwise known as the Proto-Indo-Europeans. No one knows exactly why the PIEs decided to go on a rampage (perhaps a drought), but eventually they did, conquering (and probably absorbing) not only the Cucuteni-Trypillia, but also almost all of Europe, Iran, and India.

The important thing about the Cucuteni-Trypillia people is that there were a lot of them, living in close proximity to each other, with their animals.

Humans can live with animals, as the low-population density Mongols have traditionally done, without too much difficulty. Humans can live in enormous cities, like the 200,000 citizens of the Aztec capital of Tenochtitlan, without too many problems (well, other than the cannibalism and human sacrifice). But cram humans and animals together, and you get diseases. Add in trade routes, and you get pandemics.

Rome
Source

In the year 1 (there was no year zero, despite what the graph says,) Rome was the capital of an empire with a population of almost 1.5 million people.

Between 169 and 180 AD, the Antonine Plague ravaged Rome, killing 2,000 people a day at its height. The Antonine Plague may have begun a few years earlier in China, but it was definitely brought back from the near east by soldiers returning from campaign. It spread across the Empire, killing approximately 5 million people. We think it was smallpox, but it might have been measles. Epidemiology wasn’t great in those days.

The Plague of Cyprian struck the Roman Empire between 249 and 262 AD; at its height, reports say that it killed 5,000 people a day in Rome. The effects of the plague can be seen clearly in the graph.

In 324, Constantine moved the capital of the Roman Empire to Constantinople (now Istanbul), ending Rome’s status as a major city for the next fifteen hundred years.

In 541, Yersinia Pestis made its first major debut with the Plague of Justinian, killing 25-50 million people in the Byzintine and Sasanian Empires. It most likely began in western China, was transported by nomads or merchants across central Eurasia, and then blasted through the civilized world.

Unfortunately, human complexity creates the conditions in which diseases breed.

Even without pandemics, the disease burden of early modern Europe was extremely high: most cities had grown much faster than their ability to dispose of waste and keep their inhabitants clean. The same trade networks that allow for the dispersal of new ideas and technologies (and what are technologies but ideas in action?) allow for the dispersal of pathogens. Indeed, their dispersal patterns are so similar that it is sensible to model ideas and diseases as the same thing, hence our much beloved “memes.”

Unfortunately, the spread of memes is now so rapid that humanity needs to stop and increase its technological ability to cope with the increased spread of disease.

Stay safe, stay clean, and stay healthy.

Love in the Time of Corona

30294e9d0f11ab46c91a6ef2ae833be1Sorry for the late post, guys. I’ve been voluntarily quarantined at home and lost track of the days. I was a little worried at first: would I start to feel antsy after spending multiple days indoors? Would I get bored? But never fear; I have adapted to the burrowing mole lifestyle with remarkable ease. Aside from milk, which is difficult to buy in bulk, we have enough food, books, games, and cleaning supplies to last for a good while.

How are the rest of you doing? Are you holding up okay?

I’ve been following the progress of covid-19 since news started emerging in China, but didn’t want to say much about it because I am neither a doctor nor a virologist, and don’t want to contribute to misinformation on such a serious topic. I am naturally prone to worrying about diseases and I have played those infection simulation games where you try to create a virus that infects the world, so I have been trying to find good reasons not to spend all of my time worrying for the past couple of months. Maybe China will get the virus under control, maybe there is something special about the Chinese that makes them prone to it, maybe air pollution or smoking are a big deal, maybe population density or sanitation are issues, etc. After all, ebola was plenty worrying (it seems to make people explode,) but never managed to spread in the first world because of our decent hygiene standards. (Pro tip: don’t explode in the water supply and don’t drain your diseases relatives of fluids prior to burial.)

But the news since January, as I’m sure you all know, has not been good. Whatever excuses we might make for Chinese death rates don’t particularly apply to Italy (or Iran). I’ve heard enough stories of people in their 20s and 30s needing to be intubated or put on ventilators to consider this a quite problematic virus.

The reactions of different countries (and people) to the virus have been interesting. We’ve lived most of our lives in a period of relatively low infectious diseases. Sure, HIV was terrifying in the 80s, but once they got it out of the blood supply, it was actually pretty hard to catch. If you’re older, you probably remember polio, and if you’re in my grandparent’s generation, you may remember measles, mumps, and rubella. But we’ve had many decades of relative infectional peace, unlike the accounts I’ve read of life before.

If you loved the Little House books as much as I did, you’ll remember the time the family caught malaria:

In the daytime there were only one or two mosquitoes in the house.  But at night, if the wind wasn’t blowing hard, mosquitoes came in thick swarms.  On still nights Pa kept piles of damp grass burning all around the house and the stable.  The damp grass made a smudge of smoke, to keep the mosquitoes away.  But a good many mosquitoes came, anyway. …

In the morning Laura’s forehead was speckled with mosquito bites…

Laura did not feel very well.  One day she felt cold even in the hot sunshine, and she could not get warm by the fire… She was tired and she ached.

“I ache, too,” Mary said.

Ma put her hand against Laura’s cheek.  “You can’t be cold,” she said.  “Your face is hot as fire.”

Ma called Pa, and he came in.  “Charles, do look at the girls,” she said. “I do believe they are sick.”

“Well, I don’t feel any too well myself,” said Pa.  “First I’m hot and then I’m cold, and I ache all over.”…

Ma and Pa looked a long time at each other and Ma said, “The place for you girls is bed.”

Since the whole family was affected at once, none of them was able to care for the others; it was up to Jack, the family’s bulldog, to seek help:

An arm lifted under her shoulders, and a black hand held a cup to her mouth.  Laura swallowed a bitter swallow and tried to turn her head away, but the cup followed her mouth.  The mellow, deep voice said again, “Drink it.  It will make you well.”  So Laura swallowed the whole bitter dose…

Next morning Laura felt so much better… She lay and watched Mrs. Scott tidy the house and give medicine to Pa and Ma and Mary.  Then it was Laura’s turn.  She opened her mouth, and Mrs. Scott poured a dreadful bitterness out of a small folded paper onto Laura’s tongue…

Then the doctor came.  And he was the black man.  Laura had never seen a black man before… She would have been afraid of him if she had not liked him so much.  He smiled at her with all his white teeth.  He talked with Pa and Ma, and laughed a rolling, jolly laugh.  They all wanted him to stay longer, but he had to hurry away.

Mrs. Scott said that all the settlers, up and down the creek, had fever’n’ague.  There were not enough well people to take care of the sick, and she had been going from house to house, working night and day.

“It’s a wonder you ever lived through,” she said.  “All of you down at once.”  What might have happened if Dr. Tan hadn’t found them, she didn’t know.

Dr. Tan was a doctor with the Indians.  He was on his way north to Independence when he came to Pa’s house.  It was a strange thing that Jack… had gone to meet Dr. Tan and begged him to come in.

“And here you all were, more dead than alive,” Mrs. Scott said.  Dr. Tan had stayed with them a day and night before Mrs. Scott came.  Now he was doctoring all the sick settlers.

You probably also remember when Mary went blind from scarlet fever: “Mary and Carrie and baby Grace and Ma all had scarlet fever. Far worst of all, the fever had settled in Mary’s eyes and Mary was blind.” Though Mary was probably actually affected with meningoencephalitis–scarlet fever doesn’t make people go blind–scarlet fever was plenty fearful, with a case fatality rate of 15 to 30 percent (in the 1800s).

A CFR of 15-30% puts something like coronavirus, with an estimated CFR of 1-3%, in a bit of perspective. People used to die a lot. In the early 1800s, childhood mortality was around 45% (globally.) In the 1950s, childhood mortality in western Europe was still above 10%; today, even Africa is below 10%. (For sources, read here; lots of interesting data.) This implications of this change in mortality rates are quite under-discussed (among other things, it has probably contributed to our lower fertility rates, since families don’t need to have as many children to be confident of raising a few to adulthood.)

Our ancestors had little choice but to accept that death as a constant specter that haunted their lives. We, on the other hand, don’t. Whether our current approach is the correct approach, of course, remains to be seen–and unfortunately, we burned a good month and a half of advanced warning on petty bickering to score political points and asinine bureaucratic red time that I’ve been saying is the  devil for a decade and a half.

Stay in if you can, stay healthy, and take care.

The Tragedy of JBP

Jordan B. Peterson, darling of the right, punching bag of the left, has had an amazingly shitty year.

Peterson rocketed to fame after publishing a couple of books and making some fairly anodyne (as far as I can tell) statements about the encroachment of political correctness on college campuses and in Canadian Law.

Fame is bad for people: just look at the lives of movie stars. At this point, Hollywood has probably developed some protocols for dealing with some of the unpleasant parts of being famous–I doubt Johnny Depp reads all of the mail he receives; Lady Gaga probably has someone who manages her online presence, etc–but we know Peterson wasn’t doing this because his daughter is doing his press releases.

Authors don’t expect to become famous, much less reviled.

I should note that I haven’t actually read Peterson’s book (I’m not in the market for self-help), nor have a watched more than a smattering of podcasts/interviews, but I have spent enough time here on the internet to get the general flavor of things. Peterson has always struck me as a basically kind-hearted, well-intentioned person who was trying to help others, not tear them down, so even if I disagreed with this or that specific thing he said, he still seemed like a pretty decent guy.

In exchange for being basically decent and trying to help people, Peterson received an amazing amount of hate. The left reacted to him like a demon casting off its disguise and screaming in hysterical rage.

Most famous people get more love than hate; this level of hate isn’t good for anyone, much less someone who isn’t a sociopath or a murderer.

Despite the hysterics that JBP was going to destroy civilization, he has faded pretty quickly from view. His time in the spotlight ended with a speed that makes all of the hysteria look, in retrospect, absurd. He wasn’t a threat; he was just a guy who published a book and had his fifteen minutes of fame.

The benefit of hindsight makes the lunacy of it all the stranger. I can’t think of a similarly mid-profile leftist (Peterson is way below the fame level of Krugman or Ta Nehisi) who has received the same level of vitriol. Maybe David Hogg? (But maybe that’s just sampling bias due to the particular things I happen to read.)

Peterson faded from view in part because there isn’t very much for intellectual “right wingers” who aren’t insane and aren’t on TV to do. Books take a long time to write, and hosting a regular podcast gets old. The idea that JBP was part of the “Alt Right” was only ever correct in the vaguest sense of him not being part of the mainstream Republican right, which I wouldn’t really expect him to be since he’s not even an American. He doesn’t seem to be racist, think we should repeal the 19th amendment, or want to invade Poland. The idea that he is some sort of gateway to the Alt Right proper is the kind of fevered nonsense that comes of trying to smash all human existence into a single left-right axis with everything that is not explicitly trying to accelerate leftward labeled as “reactionary.”

But anyway, Peterson’s life since he dropped out of sight has apparently been absolutely awful. According to his daughter, “Dad was put on a low dose of a benzodiazepine a few years ago for anxiety following an extremely severe autoimmune reaction to food.”

This is maddeningly specific and unspecific at the same time. What sort of autoimmune reaction? What sort of food? Is he allergic to shellfish? I am familiar with some of the conditions that might get characterized this way, eg:

In a joint effort,  Ye Qian, PhD, professor of dermatology, and Timothy Moran, MD, PhD, assistant professor of pediatrics, found that walnut allergen, in addition to inducing allergic diseases to certain individuals, could also promote autoantibody development in an autoimmune skin disease called pemphigus vulgaris. …

Two major outcomes of a dysfunctional immune system are allergy and autoimmunity. Growing evidence suggests there are some connections between the development of these two abnormalities.

Can autoimmune conditions cause anxiety? Presumably they can cause all sorts of things, especially if we play fast and lose with what we call “autoimmune.” People who are breaking out in hives and feel their throats constricting because they just ate a peanut presumably feel a lot of anxiety. Some people who are sensitive to wheat experience psychiatric symptoms (eg, celiac psychosis) that are caused by some sort of weird bodily reaction to the wheat.

So this is not a crazy thing to claim, but it might be garbled since some people use terms like “autoimmune” very loosely.

BUT, if the anxiety was caused by an autoimmune reaction to food, then the correct response shouldn’t have been psychiatric medication. It should have been treating the autoimmune disorder (and eliminating whatever food was triggering it from the diet). For that you probably need immune-suppressing drugs like infliximab or steroids like prednisone.

Anxiety is unpleasant and benzos can bring it down, especially in an emergency, but if the autoimmune condition is triggering the anxiety than you really aren’t making it go away. This is life if you have the flu and it’s causing a fever and you take an aspirin to bring down your fever, well, you still have the flu and you still feel shitty.

Except instead of aspirin, you’re taking something that is much stronger and has a much higher risk of side effects.

So at least from what she’s said (and I admit that this might be a highly compressed or slightly garbled account of things,) Peterson shouldn’t have been on benzos at all and had a different medical disorder that effectively went untreated.

According to his daughter, Peterson’s dose was increased when his wife developed cancer. Cancer is understandably extremely stressful and people need help getting through it, though I question the wisdom of giving psychiatric medication for people going through conditions which really ought to make you feel shitty. If your wife is dying and you don’t feel bad, I think there’s something wrong.

At this point, the bezos stopped doing their job (perhaps because of the untreated autoimmune disorder?):

It became apparent that he was suffering from both a physical dependency and a paradoxical reaction to the medication.

This is really interesting, at least from an abstract point of view.

To radically over-simplify the brain, think of it as having two potential directions, up and down. When you up regulate something, you get more of it. When you downregulate, you get less of it. The actual mechanics involved are obviously way more complicated. Sometimes a chemical has an exciting effect, so more of that chemical means more of the effect you want, and sometimes a chemical has a depressing effect, so more of that chemical means less of the effect you want. Brains also have receptors, which have to be present to actually use the chemicals, so it doesn’t matter how many chemicals you have if you don’t have any receptors to receive them.

Anti-anxiety drugs, like alcohol, are designed to depress the brain. Here’s a great video by ChubbyEmu explaining how alcohol dependence works:

I don’t know the exact mechanism of benzos, but the principle is likely the same. As you put in more and more depressants, trying to down-regulate the brain, the brain up-regulates something else to reassert homeostasis. This is how you build up tolerance to drugs and even become dependent on them: the physical architecture of your brain has been modified to deal with them. Take the drugs away, and suddenly the physical architecture of the brain no longer has the the right balance of chemicals to receptors that it needs. If you take out a depressant, suddenly your brain is massively up-reulated. If you’ve been chugging alcohol, all of that un-depressed brain activity is likely to massively up itself into a seizure as brain activity explodes.

In Peterson’s case, when he tried to go off benzos, he developed akathisia, a condition usually described as restlessness but described by people who’ve had it as an absolutely maddening compulsion to move endlessly for hours and hours and hours on end with no rest or stillness, no ability to turn off the racing thoughts in your brain or stop talking like you are a train hurling 300 miles an hour down the track until you fall asleep, exhausted, only to wake up the next day and do it all over again until you want to put a bullet in your brain.

I am pretty sure that you can recover from this as your brain eventually resets to its original balance, but that takes a very long time and in the meanwhile you are still dependent on the same drug/medication that caused the problem in the first place. (A hospital dealing with a patient going through acute alcohol withdrawal will give the patient alcohol to stop their seizure, for example.)

Here is where it seems that Mikhaila and her dad gave up on “North American” medicine and went off to Russia to detox Peterson cold turkey.

After several failed treatment attempts in North American hospitals, including attempts at tapering and micro-tapering, we had to seek an emergency medical benzodiazepine detox, which we were only able to find in Russia.

I understand where they’re coming from and their frustration, but once you’ve built a tolerance to drug, there is no safe way to detox without tapering, and tapering is just going to be shitty, because your brain is now designed to use that drug and you can’t get around that until you build new brain architecture.

Unfortunately, just as going cold turkey off an alcohol addition can cause seizures, so taking Peterson off the benzos seems to have had terrible effects, and he ended up in a COMA. Excuse me, a medically induced coma. I think they usually do that because someone has gone into uncontrollable seizures, but maybe there are other reasons for them:

She and her husband took him to Moscow last month, where he was diagnosed with pneumonia and put into an induced coma for eight days. She said his withdrawal was “horrific,” worse than anything she had ever heard about. She said Russian doctors are not influenced by pharmaceutical companies to treat the side-effects of one drug with more drugs, and that they “have the guts to medically detox someone from benzodiazepines.”

There is just so much horrifying here; Peterson, please do not ever place your life in your daughter’s hands again. She does not understand addiction. Look, I undrserstand your reluctance to try to treat the akasithia with more medications, but that is not a good reason to go to Russia. Peterson could just have refused the prescription for anti-akasithia drugs while still continuing a controlled, tapered detox in a “North American” hospital. The fact that they apparently couldn’t find any doctors in all of “North America” who would sign off on this plan, not even a “naturopath”, is a huge red flag. Of course his withdrawal was “horrific”; that’s why the doctors kept telling you not to do this fucking thing but you had to go drag your dad to some second world country to find doctors willing to gamble with his life.

By the way, a “coma” shouldn’t be “horrific.” By nature, people in comas don’t really do anything. They’re asleep. Something is being left out of this story.

She continues:

Jordan Peterson has only just come out of an intensive care unit, Mikhaila said. He has neurological damage, and a long way to go to full recovery. He is taking anti-seizure medication and cannot type or walk unaided, but is “on the mend” and his sense of humour has returned.

Aha. Seizures. Looks like I was right. The “horrific” part of this ordeal was most likely her dad going status epilepticus. But let’s all admire the “guts” of Russian doctors to go along with this absolutely insane idea and give her dad permanent brain damage. Great job, Mikhaila.

Everything about this is horrifying. Peterson strikes me as a decent man who wanted to make people’s lives better. Whether his advice was good or not, most of it didn’t sound outright terrible. Hard to go wrong with “clean your room.” He’s been hit with a ton of hate, his wife had cancer, and he was, from the sounds of it, incorrectly put on very strong and dependency forming medications. Getting off the medication became its own hell, so his daughter gave up on “North American” medicine and went for the cold turkey method, which of course caused seizures and brain damage.

Bloody hell.

I know where people are coming from when they look at conventional medicine and say, “Gosh, that seems wrong.” Yes, putting Peterson on benzos on the first place may have been wrong. Increasing his dosage may have also been wrong. There may have been other wrong decisions in there. But that doesn’t make going off cold turkey the right decision.

There’s this awful place you end up when you have a medical condition that falls just on the edge of mapped medical territory. We are great at treating broken bones. Trauma medical care is amazing. We can transplant organs and save people from heart attacks. Antibiotics and vaccines are also amazing. And we have solved many long-term conditions, like type 1 diabetes.

Autoimmune conditions are much harder to treat and much less well-mapped territory. Sometimes doctors are wrong. Sometimes ordinary people have good ideas that medicine hasn’t recognized yet. Sometimes a specialized diet like eating just meat is exactly what someone needs. And sometimes it isn’t. Sometimes the doctors are right. Finding the correct balance and knowing which information to trust (some peer-reviewed medical papers have turned out to be fraudulent, too,) can be hard. I don’t know how to resolve this dilemma besides “Start with accepted medicine. Talk to doctors. Watch Chubby Emu or something similar. Get a basic idea of the land. Then move on to patient forums. See what patients say. Sometimes patients report side effects as being much more common or severe than medical studies indicate. Sometimes they indicate that certain medications are more effective than indicated. etc. Watch out for anyone touting a cure that sounds too good to be true or that could kill you (do NOT, under any circumstances, drink a gallon of soy sauce.) Watch out for rabbit holes where the relevant authors only cite each other. Watch out for “papers” that don’t seem to have come from anywhere. Watch out for people trying to sell you something. And just keep learning as much as you can.”

Good luck, try to stay healthy and well. Get your sunshine.

I hope poor Peterson recovers.

The Autism Matrix

Just a thought this morning, but I think the “autism spectrum” would be better characterized as a “matrix” with intelligence running along one axis and impairment on the other.

We can divide this into four useful quadrants, representing high IQ & high impairment, high IQ & low impairment, low IQ & high impairment, and low IQ and low impairment.

Of course these are not entirely unrelated measures–the impairment that causes autism can also cause low IQ, but it makes a functional distinction because different quadrants suffer different challenges and limitations.

The traditional distinction was between “autism” and “asperger’s,” with asperger’s generally reserved for the smarter, higher functioning kids. Asperger’s has been dropped as a diagnosis due to this distinction being not the most useful–there are high-functioning dumb kids with autism and low-functioning smart kids. (And adults.)

Just a little thought.

American Senescence

 

NIHMS253378.html

aging_and_cogntive_decline
Source: Boston U, Cognitive Changes with Aging

People suffering cognitive decline (dementia, Alzheimer’s, or plain old age,) should have their TV consumption carefully monitored because they lose the ability to tell that the things they are seeing, like zombies, aren’t real.

This goes for the news, as well, and is why your older relatives send you so many stupid email forwards about politics and are irrationally hung up on whatever the news is talking about today. Their ability to understand what they are viewing declines while their fear of it increases. (Do not be cruel in return; they cannot help that they are aging.)

People blame political craziness on young people, but we have never before in all of history had such a large percent of the population in mental decline–and it is only going to get worse.

Short argument for vending machines full of experimental drugs

So I was thinking the other day about medication and Marilyn Manson’s “I don’t like the drugs but the drugs like me,” and it occurred to me that illegal drugs, generally speaking, are really good at what they do.

By contrast, take anti-depressants. Even the “really good” ones have abominable track records. Maybe a good drug works for 10, 20% of the population–but you don’t know which. Depressed people just have to keep trying different pills until they find one that works better than placebo.

Meanwhile, you’ll never hear someone say “Oh, yeah, crack just doesn’t do anything for me.” Crack works. Heroin works. Sure, they’ll fuck you up, but they work.

Illegal drugs are tried and tested in the almost-free black market of capitalism, where people do whatever they want with them–grind them up, snort them, inject them, put them up their buts–and stop taking them whenever they stop working. As a result, illegal drugs are optimized for being highly addictive, yes, but also for working really well. And through trial and error, people have figured out how much they need, how best to take it, and how often for the optimal effects.

In other words, simply letting lots of people mess around with drugs results in really effective drugs.

The downside to the black-free-market refinement of drugs is that lots of people die in the process.

Most people don’t want to be killed by an experimental anti-depressant, (is that ironic? That seems kind of ironic,) so it makes sense to have safeguards in place to make sure that their latest incarnations won’t send you into cardiac arrest, but many medications are intended for people whose lives are otherwise over. People with alzheimer’s, pancreatic cancer, glioblastoma, ALS, fatal familial insomnia, etc, are going to die. (Especially the ones with fatal familial insomnia. I mean, it’s got “fatal” in the name.) They have been handed death sentences and they know it, so their only possible hope is to speed up drug/treatment development as much as possible.

I am quite certain that something similar to what I am proposing already exists in some form. I am just proposing that we ramp it up: all patients with essentially incurable death sentences have access to whatever experimental drugs (or non-experimental drugs) they  want, with a few obvious caveats about price–but really, price tends to come down with increased demand, so just stock everything in vending machines and charge 75c a dose.

Of course, the end result might just be that alzheimer’s meds come to closely resemble heroin, but hey, at least sick people will feel better as they die.

Since this is a short post, let me append a quick description of fatal familial insomnia: 

Fatal insomnia is a rare disorder that results in trouble sleeping.[2] The problems sleeping typically start out gradually and worsen over time.[3] Other symptoms may include speech problems, coordination problems, and dementia.[4][5] It results in death within a few months to a few years.[2]

It is a prion disease of the brain.[2] It is usually caused by a mutation to the protein PrPC.[2] It has two forms: fatal familial insomnia (FFI), which is autosomal dominant and sporadic fatal insomnia (sFI) which is due to a noninherited mutation. Diagnosis is based on a sleep studyPET scan, and genetic testing.[1]

Fatal insomnia has no known cure and involves progressively worsening insomnia, which leads to hallucinations, delirium, confusional states like that of dementia, and eventually death.[6] The average survival time from onset of symptoms is 18 months.[6] The first recorded case was an Italian man, who died in Venice in 1765.[7]

Terrible.

 

Be careful what you rationalize

The first few thousand years of “medicine” were pretty bad. We did figure out a few things–an herb that’ll make you defecate faster here, something to staunch bleeding there–but overall, we were idiots. Doctors used to stick leeches on people to make them bleed, because they were convinced that “too much blood” was a problem. A primitive form of CPR invented in the 1700s involved blowing tobacco smoke up a drowned person’s rectum (it didn’t work.) And, of course, people have periodically taken it into their heads that consuming mercury is a good idea.

Did pre-modern (ie, before 1900 or so) doctors even benefit their patients, on net? Consider this account of ancient Egyptian medicine:

The ancient Egyptians had a remarkably well-organized medical system, complete with doctors who specialized in healing specific ailments. Nevertheless, the cures they prescribed weren’t always up to snuff. Lizard blood, dead mice, mud and moldy bread were all used as topical ointments and dressings, and women were sometimes dosed with horse saliva as a cure for an impaired libido.

Most disgusting of all, Egyptian physicians used human and animal excrement as a cure-all remedy for diseases and injuries. According to 1500 B.C.’s Ebers Papyrus, donkey, dog, gazelle and fly dung were all celebrated for their healing properties and their ability to ward off bad spirits. While these repugnant remedies may have occasionally led to tetanus and other infections, they probably weren’t entirely ineffective—research shows the microflora found in some types of animal dung contain antibiotic substances.

Bed rest, nurturing care, a bowl of hot soup–these are obviously beneficial. Dog feces, not so much.

Very ancient medicine and primitive shamanism seem inherently linked–early medicine can probably be divided into “secret knowledge” (ie, useful herbs); magical rites like painting a patient suffering from yellow fever with yellow paint and then washing it off to “wash away” the disease; and outright charlatanry.

It’s amazing that medicine persisted as a profession for centuries despite its terrible track record; you’d think disgruntled patients–or their relatives–would have put a quick and violent end to physicians bleeding patients.

The Christian Scientists got their start when a sickly young woman observed that she felt better when she didn’t go to the doctor than when she did, because this was the 1800s and medicine in those days did more harm than good. Yet the Christian Scientists were (and remain) an exception. Society at large never (to my knowledge) revolted against the “expertise” of supposed doctors.

Our desire for answers in the face of the unknown, our desire to do something when the optimal course is actually doing nothing and just hoping you don’t die, has overwhelmed medicine’s terrible track record for centuries.

Modern medicine is remarkably good. We can set bones, cure bubonic plague, prevent smallpox, and transplant hearts. There are still lots of things we can’t do–we can’t cure the common cold, for example–but modern medicine is, on the whole, positive. So this post is not about modern medicine.

But our tendency to trust too much, to trust the guy who offers answers and solutions over the guy who says “We don’t know, we can’t know, you’re probably best off doing nothing and hoping for the best,” is still with us. It’s probably a cognitive bias, and very hard to combat without purposefully setting out to do so.

So be careful what you rationalize.

Bio-thermodynamics and aging

I suspect nature is constrained by basic physics/chemistry/thermodynamics in a variety of interesting ways.

For example, chemical reactions (and thus biological processes) proceed more quickly when they are warm than cold–this is pretty much a tautology, since temperature=movement–and thus it seems reasonable to expect certain biological processes to proceed more slowly in colder places/seasons than in warmer ones.

The Greenland Shark, which lives in very cold waters, lives to be about 300-500 years old. It’s no coincidence:

Temperature is a basic and essential property of any physical system, including living systems. Even modest variations in temperature can have profound effects on organisms, and it has long been thought that as metabolism increases at higher temperatures so should rates of ageing. Here, we review the literature on how temperature affects longevity, ageing and life history traits. From poikilotherms to homeotherms, there is a clear trend for lower temperature being associated with longer lifespans both in wild populations and in laboratory conditions. Many life-extending manipulations in rodents, such as caloric restriction, also decrease core body temperature.

This implies, in turn, that people (or animals) who overeat will tend to die younger, not necessarily due to any particular effects of having extra lumps of fat around, but because they burn hotter and thus faster.

Weighing more may trigger certain physiological changes–like menarchy–to begin earlier due to the beneficial presence of fat–you don’t want to menstruate if you don’t have at least a little weight to spare–which may in turn speed up certain other parts of aging, but there could be an additional effect on aging just from the presence of more cells in the body, each requiring additional metabolic processes to maintain.

Increased human height (due to better nutrition) over the past century could have a similar effect–shorter men do seem to live longer than taller men, eg: 

Observational study of 8,003 American men of Japanese ancestry from the Honolulu Heart Program/Honolulu-Asia Aging Study (HHP/HAAS), a genetically and culturally homogeneous cohort followed for over 40 years. …

A positive association was found between baseline height and all-cause mortality (RR = 1.007; 95% CI 1.003–1.011; P = 0.002) over the follow-up period. Adjustments for possible confounding variables reduced this association only slightly (RR = 1.006; 95% CI 1.002–1.010; P = 0.007). In addition, height was positively associated with all cancer mortality and mortality from cancer unrelated to smoking. A Cox regression model with time-dependent covariates showed that relative risk for baseline height on mortality increased as the population aged. Comparison of genotypes of a longevity-associated single nucleotide polymorphism in FOXO3 showed that the longevity allele was inversely associated with height. This finding was consistent with prior findings in model organisms of aging. Height was also positively associated with fasting blood insulin level, a risk factor for mortality. Regression analysis of fasting insulin level (mIU/L) on height (cm) adjusting for the age both data were collected yielded a regression coefficient of 0.26 (95% CI 0.10–0.42; P = 0.001).

The more of you there is, the more of you there is to age.

Interesting: lots of data on human height.

But there’s another possibility involving internal temperature–since internal body temperature requires calories to maintain, people who “run hot” (that is, are naturally warmer) may burn more calories and tend to be thinner than people who tend to run cool, who may burn fewer calories and thus tend to weigh more. Eg, low body temperature linked to obesity in new study: 

A new study has found that obese people (BMI >30) have lower body temperature during the day than normal weight people. The obese people had an average body temperature that was .63 degrees F cooler than normal weight people. The researchers calculated that this lower body temperature—which reflects a lower metabolic rate—would result in a body fat accumulation of approximately 160 grams per month, or four to five pounds a year, enough for the creeping weight gain many people experience.

There’s an interesting discussion in the link on thyroid issues that cause people to run cold and thus gain weight, and how some people lose weight with thyroid treatment.

On the other hand, this study found the opposite, and maybe the whole thing just washes out to women and men having different internal temperatures?

Obese people are–according to one study–more likely to suffer mood or mental disorders, which could also be triggered by an underlying health problem. They also suffer faster functional decline in old age:

Women had a higher prevalence of reported functional decline than men at the upper range of BMI categories (31.4% vs 14.3% for BMI > or =40). Women (odds ratio (OR) = 2.61, 95% confidence interval (CI) = 1.39-4.95) and men (OR = 3.32, 95% CI = 1.29-8.46) exhibited increased risk for any functional decline at BMI of 35 or greater. Weight loss of 10 pounds and weight gain of 20 pounds were also risk factors for any functional decline.

Note that gaining weight and losing weight were also related to decline, probably due to health problems that caused the weight fluctuations in the first place.

Of course, general physical decline and mental decline go hand-in-hand. Whether obesity causes declining health, declining health causes obesity, or some underlying third factor, like biological aging underlies both, I don’t know.

Anyway, I know this thought is a bit disjointed; it’s mostly just food for thought.

Can Autism be Cured via a Gluten Free Diet?

I’d like to share a story from a friend and her son–let’s call them Heidi and Sven.

Sven was always a sickly child, delicate and underweight. (Heidi did not seem neglectful.) Once Sven started school, Heidi started receiving concerned notes from his teachers. He wasn’t paying attention in class. He wasn’t doing his work. They reported repetitious behavior like walking slowly around the room and tapping all of the books. Conversation didn’t quite work with Sven. He was friendly, but rarely responded when spoken to and often completely ignored people. He moved slowly.

Sven’s teachers suggested autism. Several doctors later, he’d been diagnosed.

Heidi began researching everything she could about autism. Thankfully she didn’t fall down any of the weirder rabbit holes, but when Sven’s started complaining that his stomach hurt, she decided to try a gluten-free diet.

And it worked. Not only did Sven’s stomach stop hurting, but his school performance improved. He stopped laying his head down on his desk every afternoon. He started doing his work and responding to classmates.

Had a gluten free diet cured his autism?

Wait.

A gluten free diet cured his celiac disease (aka coeliac disease). Sven’s troublesome behavior was most likely caused by anemia, caused by long-term inflammation, caused by gluten intolerance.

When we are sick, our bodies sequester iron to prevent whatever pathogen is infecting us from using it. This is a sensible response to short-term pathogens that we can easily defeat, but in long-term sicknesses, leads to anemia. Since Sven was sick with undiagnosed celiac disease for years, his intestines were inflamed for years–and his body responded by sequestering iron for years, leaving him continually tired, spacey, and unable to concentrate in school.

The removal of gluten from his diet allowed his intestines to heal and his body to finally start releasing iron.

Whether or not Sven had (or has) autism is a matter of debate. What is autism? It’s generally defined by a list of symptoms/behaviors, not a list of causes. So very different causes could nonetheless trigger similar symptoms in different people.

Saying that Sven’s autism was “cured” by this diet is somewhat misleading, since gluten-free diets clearly won’t work for the majority of people with autism–those folks don’t have celiac disease. But by the same token, Sven was diagnosed with autism and his diet certainly did work for him, just as it might for other people with similar symptoms. We just don’t have the ability right now to easily distinguish between the many potential causes for the symptoms lumped together under “autism,” so parents are left trying to figure out what might work for their kid.

Interestingly, the overlap between “autism” and feeding problems /gastrointestinal disorders is huge. Now, when I say things like this, I often notice that people are confused about the scale of problems. Nearly every parent swears, at some point, that their child is terribly picky. This is normal pickiness that goes away with time and isn’t a real problem. The problems autistic children face are not normal.

Parent of normal child: “My kid is so picky! She won’t eat peas!”

Parent of autistic child: “My kid only eats peas.”

See the difference?

Let’s cut to Wikipedia, which has a nice summary:

Gastrointestinal problems are one of the most commonly associated medical disorders in people with autism.[80] These are linked to greater social impairment, irritability, behavior and sleep problems, language impairments and mood changes, so the theory that they are an overlap syndrome has been postulated.[80][81] Studies indicate that gastrointestinalinflammation, immunoglobulin E-mediated or cell-mediated food allergies, gluten-related disorders (celiac diseasewheat allergynon-celiac gluten sensitivity), visceral hypersensitivity, dysautonomia and gastroesophageal reflux are the mechanisms that possibly link both.[81]

A 2016 review concludes that enteric nervous system abnormalities might play a role in several neurological disorders, including autism. Neural connections and the immune system are a pathway that may allow diseases originated in the intestine to spread to the brain.[82] A 2018 review suggests that the frequent association of gastrointestinal disorders and autism is due to abnormalities of the gut–brain axis.[80]

The “leaky gut” hypothesis is popular among parents of children with autism. It is based on the idea that defects in the intestinal barrier produce an excessive increase of the intestinal permeability, allowing substances present in the intestine, including bacteria, environmental toxins and food antigens, to pass into the blood. The data supporting this theory are limited and contradictory, since both increased intestinal permeability and normal permeability have been documented in people with autism. Studies with mice provide some support to this theory and suggest the importance of intestinal flora, demonstrating that the normalization of the intestinal barrier was associated with an improvement in some of the ASD-like behaviours.[82] Studies on subgroups of people with ASD showed the presence of high plasma levels of zonulin, a protein that regulates permeability opening the “pores” of the intestinal wall, as well as intestinal dysbiosis (reduced levels of Bifidobacteria and increased abundance of Akkermansia muciniphilaEscherichia coliClostridia and Candida fungi) that promotes the production of proinflammatory cytokines, all of which produces excessive intestinal permeability.[83] This allows passage of bacterial endotoxins from the gut into the bloodstream, stimulating liver cells to secrete tumor necrosis factor alpha (TNFα), which modulates blood–brain barrier permeability. Studies on ASD people showed that TNFα cascades produce proinflammatory cytokines, leading to peripheral inflammation and activation of microglia in the brain, which indicates neuroinflammation.[83] In addition, neuroactive opioid peptides from digested foods have been shown to leak into the bloodstream and permeate the blood–brain barrier, influencing neural cells and causing autistic symptoms.[83] (See Endogenous opiate precursor theory)

Here is an interesting case report of psychosis caused by gluten sensitivity:

 In May 2012, after a febrile episode, she became increasingly irritable and reported daily headache and concentration difficulties. One month after, her symptoms worsened presenting with severe headache, sleep problems, and behavior alterations, with several unmotivated crying spells and apathy. Her school performance deteriorated… The patient was referred to a local neuropsychiatric outpatient clinic, where a conversion somatic disorder was diagnosed and a benzodiazepine treatment (i.e., bromazepam) was started. In June 2012, during the final school examinations, psychiatric symptoms, occurring sporadically in the previous two months, worsened. Indeed, she began to have complex hallucinations. The types of these hallucinations varied and were reported as indistinguishable from reality. The hallucinations involved vivid scenes either with family members (she heard her sister and her boyfriend having bad discussions) or without (she saw people coming off the television to follow and scare her)… She also presented weight loss (about 5% of her weight) and gastrointestinal symptoms such as abdominal distension and severe constipation.

So she’s hospitalized and they do a bunch of tests. Eventually she’s put on steroids, which helps a little.

Her mother recalled that she did not return a “normal girl”. In September 2012, shortly after eating pasta, she presented crying spells, relevant confusion, ataxia, severe anxiety and paranoid delirium. Then she was again referred to the psychiatric unit. A relapse of autoimmune encephalitis was suspected and treatment with endovenous steroid and immunoglobulins was started. During the following months, several hospitalizations were done, for recurrence of psychotic symptoms.

Again, more testing.

In September 2013, she presented with severe abdominal pain, associated with asthenia, slowed speech, depression, distorted and paranoid thinking and suicidal ideation up to a state of pre-coma. The clinical suspicion was moving towards a fluctuating psychotic disorder. Treatment with a second-generation anti-psychotic (i.e., olanzapine) was started, but psychotic symptoms persisted. In November 2013, due to gastro-intestinal symptoms and further weight loss (about 15% of her weight in the last year), a nutritionist was consulted, and a gluten-free diet (GFD) was recommended for symptomatic treatment of the intestinal complaints; unexpectedly, within a week of gluten-free diet, the symptoms (both gastro-intestinal and psychiatric) dramatically improvedDespite her efforts, she occasionally experienced inadvertent gluten exposures, which triggered the recurrence of her psychotic symptoms within about four hours. Symptoms took two to three days to subside again.

Note: she has non-celiac gluten sensitivity.

One month after [beginning the gluten free diet] AGA IgG and calprotectin resulted negative, as well as the EEG, and ferritin levels improved.

Note: those are tests of inflammation and anemia–that means she no longer has inflammation and her iron levels are returning to normal.

She returned to the same neuro-psychiatric specialists that now reported a “normal behavior” and progressively stopped the olanzapine therapy without any problem. Her mother finally recalled that she was returned a “normal girl”. Nine months after definitely starting the GFD, she is still symptoms-free.

This case is absolutely crazy. That poor girl. Here she was in constant pain, had constant constipation, was losing weight (at an age when children should be growing,) and the idiot adults thought she had a psychiatric problem.

This is not the only case of gastro-intestinal disorder I have heard of that presented as psychosis.

Speaking of stomach pain, did you know Curt Cobain suffered frequent stomach pain that was so severe it made him vomit and want to commit suicide, and he started self-medicating with heroin just to stop the pain? And then he died.

Back to autism and gastrointestinal issues other than gluten, here is a fascinating new study on fecal transplants (h/t WrathofGnon):

Many studies have reported abnormal gut microbiota in individuals with Autism Spectrum Disorders (ASD), suggesting a link between gut microbiome and autism-like behaviors. Modifying the gut microbiome is a potential route to improve gastrointestinal (GI) and behavioral symptoms in children with ASD, and fecal microbiota transplant could transform the dysbiotic gut microbiome toward a healthy one by delivering a large number of commensal microbes from a healthy donor. We previously performed an open-label trial of Microbiota Transfer Therapy (MTT) that combined antibiotics, a bowel cleanse, a stomach-acid suppressant, and fecal microbiota transplant, and observed significant improvements in GI symptoms, autism-related symptoms, and gut microbiota. Here, we report on a follow-up with the same 18 participants two years after treatment was completed. Notably, most improvements in GI symptoms were maintained, and autism-related symptoms improved even more after the end of treatment.

Fecal transplant is exactly what it sounds like. The doctors clear out a person’s intestines as best they can, then put in new feces, from a donor, via a tube (up the butt or through the stomach; either direction works.)

Unfortunately, it wasn’t a double-blind study, but the authors are hopeful that they can get funding for a double-blind placebo controlled study soon.

I’d like to quote a little more from this study:

Two years after the MTT was completed, we invited the 18 original subjects in our treatment group to participate in a follow-up study … Two years after treatment, most participants reported GI symptoms remaining improved compared to baseline … The improvement was on average 58% reduction in Gastrointestinal Symptom Rating Scale (GSRS) and 26% reduction in % days of abnormal stools… The improvement in GI symptoms was observed for all sub-categories of GSRS (abdominal pain, indigestion, diarrhea, and constipation, Supplementary Fig. S2a) as well as for all sub-categories of DSR (no stool, hard stool, and soft/liquid stool, Supplementary Fig. S2b), although the degree of improvement on indigestion symptom (a sub-category of GSRS) was reduced after 2 years compared with weeks 10 and 18. This achievement is notable, because all 18 participants reported that they had had chronic GI problems (chronic constipation and/or diarrhea) since infancy, without any period of normal GI health.

Note that these children were chosen because they had both autism and lifelong gastrointestinal problems. This treatment may do nothing at all for people who don’t have gastrointestinal problems.

The families generally reported that ASD-related symptoms had slowly, steadily improved since week 18 of the Phase 1 trial… Based on the Childhood Autism Rating Scale (CARS) rated by a professional evaluator, the severity of ASD at the two-year follow-up was 47% lower than baseline (Fig. 1b), compared to 23% lower at the end of week 10. At the beginning of the open-label trial, 83% of participants rated in the severe ASD diagnosis per the CARS (Fig. 2a). At the two-year follow-up, only 17% were rated as severe, 39% were in the mild to moderate range, and 44% of participants were below the ASD diagnostic cut-off scores (Fig. 2a). … The Vineland Adaptive Behavior Scale (VABS) equivalent age continued to improve (Fig. 1f), although not as quickly as during the treatment, resulting in an increase of 2.5 years over 2 years, which is much faster than typical for the ASD population, whose developmental age was only 49% of their physical age at the start of this study.

Important point: their behavior matured faster than it normally does in autistic children.

This is a really interesting study, and I hope the authors can follow it up with a solid double-blind.

Of course, not all autists suffer from gastrointestinal complaints. Many eat and digest without difficulty. But the connection between physical complaints and mental disruption across a variety of conditions is fascinating. How many conditions that we currently believe are psychological might actually be caused a by an untreated biological illness?