DIY Medicine

A medium-length article in The Scientist describes patients with fatal diseases taking their treatment into their own hands. Here’s what happened with lithium and ALS:

Humberto Macedo, an ALS patient in Brazil, started a Google Docs spreadsheet to track self-reported ALSFRS-R scores. And Karen Felzer, a research scientist on the US Geological Survey’s Earthquake Hazards team whose father had ALS, built a website to host the project. At 3 and 6 months, Felzer, who has a background in statistics (normally devoted to analyzing earthquake aftershocks), examined the data. Both times, she found no evidence that lithium slowed progression. By November 2008, when Felzer posted her second report on the project’s website, most patients had stopped taking the drug.

Drug companies don’t like the new movement:

Drug companies are understandably wary of any movement that could jeopardize their chances of success, including patient-initiated trials. Drug developers go to great lengths to control the variables in clinical trials, to optimize the dosing and the treatment window in order to reduce side effects while maximizing therapeutic gain, and to monitor patients’ health. If patients outside the clinical research system start taking experimental drugs on their own, the likelihood of something going wrong is greatly magnified. And if something does go wrong—something that may not have been caused by the drug at all—entire drug development programs could be shut down prematurely.

The author of the article, Jef Akst, was impressed enough to start a blog about the subject.

The Pizza Paradox: Home Cooking and Personal Science

Last week I had pizza at the home of my friends Bridget and Carl. It tasted divine. The crust was puffy, chewy and the right amount. The thin-crust bottom was slightly crunchy. The tomato sauce had depth. The toppings (two kinds of mushrooms, Jerusalem artichokes, zucchini, onions, goat cheese) were tasty, creamy and a little crunchy. It was pretty and three-dimensional. It was easily the best pizza I’d ever had, the best home cooking I’d ever had, and much better than the lamb I’d had at Chez Panisse the night before, although the lamb was excellent. The pizza hadn’t been hard to make nor were the ingredients expensive. Do other people wonder why this is so good? I asked my friends.

At some level I knew why it was so good — why the sauce was so good, for example (see below). The puzzle — let me call it the Pizza Paradox — was that commercial pizza, even at fancy restaurants (such as Chez Panisse), is so much worse. In restaurants, pizza-makers make dozens of pizzas per day. Business success is on the line. That should push them to do better. Professional cooks study cooking, have vast experience. They use a pizza oven. My friends have never studied cooking, never cooked professionally. They might make pizza once/month. Nothing is on the line. My friends don’t have a pizza oven. High-end restaurant pizza should be much better, but the opposite was true.

In my experience, high-end restaurant food usually is much better than home-cooked versions. Why is high-end pizza a big exception — at least, compared to Bridget and Carl’s version?

My explanation has two parts. First, the concept of pizza is brilliant. It taps more sources of pleasure than any other food I can think of. Chewiness from crust. Fat from cheese. Umami, sweet, and sour from tomato sauce. Protein from cheese and meat. Complexity of flavor from sauce and toppings. Variety of texture from toppings and crust. Variety of flavor from toppings. Attractive appearance from toppings and bright red tomato sauce. Most foods fail to tap most of these sources. For example, a soft drink isn’t chewy, doesn’t have protein, doesn’t have fat, doesn’t have variety of texture or variety of flavor, and isn’t attractive.

My friends had one goal: to make the best possible pizza. It couldn’t take too long or cost too much but they weren’t trying to save time or cut costs. Over the years, they tweaked the recipe various ways and their pizza got better and better. Experimentation was safe. If a variation made things worse, it didn’t matter. It would still taste plenty good. (Due to the brilliance of pizza.) Variation was fun. After making pizza in a new way, they’d eat the pizza themselves (with guests) and find out if the new twist made a difference.

Professional pizza makers don’t do this. After a restaurant opens, they make pizza roughly the same way forever. The pizza at Chez Panisse, for example, looks the same now as many years ago. The owner might want to make the best possible pizza but is unlikely to experiment month after month year after year. The actual cooks just want to make satisfactory pizza. Making the best possible pizza is not part of the job. The owner might benefit from better pizza but the cooks would not. They’re cranking it out under time pressure (watch Hell’s Kitchen). They do what they’re told. Owners fear experimentation: It might be worse. It won’t be what’s expected. Don’t mess with success.

This illustrates what I’ve said many times: job and science don’t mix well. To do the best possible science or make the best possible pizza, you need freedom to experiment. People with jobs get stuck. All jobs — including professor at research university, rice grower, and pizza maker — depend on steady output of the same thing again and again. Trying to maximize short-term output interferes with long-term improvement. To do the best possible science or make the best possible pizza, you also need the right motivation: You care about nothing else. People with jobs have many goals. This is why we need personal science: To overcome the (serious) limitations of professional science.

All this should be obvious, but curiously isn’t. Long ago, philosophers such as John Stuart Mill claimed that people “maximized utility”, apparently not realizing that maximizing output (which happens when people work “hard”) slows down or prevents innovation. Later thinkers, such as Frederick Hayek and Milton Friedman, glorified markets. They too failed to grasp, or at least say anywhere, that market demands get in the way of innovation.

The recipe for my friends’s pizza had several non-obvious features:

1. Pizza dough from Trader Joe’s. At Chez Panisse and other high-end restaurants, this would be taboo. It might produce better results — you still couldn’t do it.

2. Pizza stones above and below the pizza. My friends use an ordinary oven. Maybe an ordinary oven with two pizza stones produces better results than a pizza oven.

3. Balsamic vinegar in the tomato sauce. They got the idea from a friend. American cooks, including professional ones, routinely fail to understand how much fermented foods (such as balsamic vinegar) can improve taste. My friends also use more traditional flavorings (marjoram, basil, and garlic) in the tomato sauce.

4. Plenty of goat cheese. They scatter goat cheese slices over the top of the sauce.

There you have the secret of Bridget and Carl’s Pizza.

Assorted Links

Thanks to Alex Chernavsky.

The Rise of Personal Science: One Example, About Acne

Looking around for evidence connecting glutathione level and acne (it has been proposed that low glutathione causes acne), I found this at acne.org, from a 20-year-old woman:

As a personal choice research and viewing other people’s experiences with supplements is safer than taking my doctor’s advice. My doctor insisted I go on the pill, insisted I get on antibiotics [a common prescription for acne], insisted nothing was wrong with me and even did a hormonal test…said I was “healthy and normal” and to leave the office because my hormones were normal as well as everything from the liver onwards. I stared at him and told him he was wrong: 1. hormone tests will lie if I’m on the pill and 2. I have acne, never had it before in my life and it came about too fast … If acne is a symptom then something is wrong. I personally don’t trust doctors because they generalize [too much] and from personal experiences [where] I’ve been laughed at and dismissed and even told “leaky gut doesn’t exist”. Personal research goes a long way and it’s so great to have communities like this where everyone can help each other out.

This is personal science in the sense of trying to learn from other people’s data. What’s interesting is that she says this. Nobody forced her to. She isn’t try to sell something or look good. Her discovery of the power of “research and viewing other people’s experiences” — better than trusting a doctor — (a) interests her and (b) she thinks will interest acne.org readers. Her own experience certainly supports what she says.

Long ago, it was discovered that the Earth is round. Before the discovery, nobody said that. After the discovery, people discussed it for a while (“Have you heard? The Earth is round.”), maybe a few hundred years. When knowledge of the Earth’s roundness became part of everyone’s belief system, people stopped discussing it.

In other words, this comment suggests that a new truth is coming into being. Her experience is the same as mine with regard to acne: Can’t trust what a doctor says. My dermatologist prescribed two medicines. Studying myself showed that only one of them worked, a possibility my dermatologist seemed to have never considered.

A Revolution in Growing Rice

Surely you have heard of Norman Borlaug, “Father of the Green Revolution”. He won a Nobel Peace Prize in 1970 for

the introduction of these high-yielding [wheat] varieties combined with modern agricultural production techniques to Mexico, Pakistan, and India. As a result, Mexico became a net exporter of wheat by 1963. Between 1965 and 1970, wheat yields nearly doubled in Pakistan and India.

He had a Ph.D. in plant pathology and genetics. He learned how to develop better strains in graduate school. He worked as an agricultural researcher in Mexico.

You have probably not heard of Henri de Laulanié, a French Jesuit priest who worked in Madagascar starting in the 1960s. He tried to help local farmers grow more rice. He had only an undergraduate degree in agriculture. In contrast to Borlaug, he tested simple variations that any farmer could afford. He found that four changes in traditional practices had a big effect:

• Instead of planting seedlings 30-60 days old, tiny seedlings less than 15 days old were planted.
• Instead of planting 3-5 or more seedlings in clumps, single seedlings were planted.
• Instead of close, dense planting, with seed [densities] of 50-100 kg/ha, plants were set out carefully and gently in a square pattern, 25 x 25 cm or wider if the soil was very good; the seed [density] was reduced by 80-90% . . .
• Instead of keeping rice paddies continuously flooded, only a minimum of water was applied daily to keep the soil moist, not always saturated; fields were allowed to dry out several times to the cracking point during the growing period, with much less total use of water.

The effect of these changes was considerably more than Borlaug’s doubling of yield:

The farmers around Ranomafana who used [these methods] in 1994-95 averaged over 8 t/ha, more than four times their previous yield, and some farmers reached 12 t/ha and one even got 14 t/ha. The next year and the following year, the average remained over 8 t/ha, and a few farmers even reached
16 t/ha.

The possibility of such enormous improvements had been overlooked by both farmers and researchers. They were achieved without damaging the environment with heavy fertilizer use, unlike Borlaug’s methods.

Henri de Laulanié was not a personal scientist but he resembled one. Like a personal scientist, he cared about only one thing (improving yield). Professional scientists have many goals (publication, promotion, respect of colleagues, grants, prizes, and so on) in addition to making the world a better place. Like a personal scientist, de Laulanié did small cheap experiments. Professional scientists rarely do small cheap experiments. (Many of them worship at the altar of large randomized trials.) Like a personal scientist, de Laulanié tested treatments available to everyone (e.g., butter). Professional scientists rarely do this. Like a personal scientist, he tried to find the optimal environment. In the area of health, professional scientists almost never do this, unless they are in a nutrition department or school of public health. Almost all research funding goes to the study of other things, such as molecular mechanisms and drugs.

Personal science matters because personal scientists can do things professional scientists can’t or won’t do. de Laulanié’s work shows what a big difference this can make.

A recent newspaper article. The results are so good they have been questioned by mainstream researchers.

Thanks to Steve Hansen.

Assorted Links

Thanks to Alex Chernavsky.

How to Encourage Personal Science?

I wonder how to encourage personal science (= science done to help yourself or a loved one, usually for health reasons). Please respond in the comments or by emailing me.

An obvious example of personal science is self-measurement (blood tests, acne, sleep, mood, whatever) done to improve what you’re measuring. Science is more than data collection and the data need not come from you. You might study blogs and forums or the scientific literature to get ideas. Self-measurement and data analysis by non-professionals is much easier than ever before. Other people’s experience and the scientific literature are much more available than ever before. This makes personal science is far more promising than ever before.

Personal science has great promise for reasons that aren’t obvious. It seems to be a balancing act: Personal science has strengths and weakness, professional science has strengths and weaknesses. I can say that personal scientists can do research much faster than professionals and are less burdened with conflicts of interest (personal scientists care only about finding a solution; professionals care about other things, including publication, grants, prizes, respect, and so on). A professional scientist might reply that professional scientists have more training and support. History overwhelming favors professional science — at least until you realize that Galileo, Darwin, Mendel, and Wegener (continental drift) were not professional scientists. (Galileo was a math professor.) There is very little personal science of any importance.

These arguments (balancing act, examination of history) miss something important. In a way, it isn’t a balancing act. Professional science and personal science do different things. In some ways history supports personal science. Let me give an example. I believe my most important discovery will turn out to be the effect of morning faces on mood. The basic idea that my findings support is that we have a mood control system that requires seeing faces in the morning to work properly. When the system is working properly, we have a circadian rhythm in mood (happy, eager, serene during the day, unhappy, reluctant, irritable at night). The strangest thing is that if you see faces in the morning (e.g, 7 am) they have no noticeable effect until 6 pm the same day. There is a kind of uncanny valley at work here. If you know little about mood research, this will seem unlikely but possible. If you are an average professional mood researcher, it will seem much worse: can’t possibly be true, total nonsense. If you know a lot about depression research, however, you will know that there is considerable supporting research (e.g., in many cases, depression gets better in the evening). It will still seem very unlikely, but not impossible. However, if you’re a professional scientist, it doesn’t matter what you think. You cannot study it. It is too strange to too many people, including your colleagues. You risk ridicule by studying it. If you’re a personal scientist, of course you can study it. You can study anything.

This illustrates a structural problem:

2013-02-28 personal & professional science in plausibility space

This graph shows what personal and professional scientists can do. Ideas vary in plausibility from low to high; data gathering (e.g., experiments) varies in cost from low to high. Personal scientists can study ideas of any plausibility, but they have a relatively small budget. Professional scientists can spend much more — in fact, must spend much more. I suppose publishing a cheap experiment would be like wearing cheap clothes. Another limitation of professional scientists is that they can only study ideas of medium plausibility. Ideas of low plausibility (such as my morning faces idea) are “crazy”. To take them seriously risks ridicule. Even if you don’t care what your colleagues think, there is the additional problem that a test of them is unlikely to pay off. You cannot publish results showing that a low-plausibility idea is wrong. Too obvious. In addition, professional scientists cannot study ideas of high plausibility. Again, the only publishable result would be that your test shows the idea is wrong. That is unlikely to happen. You cannot publish results that show that something that everybody already believes is true.

It is a bad idea for anyone — personal or professional scientist — to spend a lot of resources testing an idea of low or high plausibility. If the idea has low plausibility, the outcome is too likely to be “it’s wrong”. There are a vast number of low-plausibility ideas. No one can afford to spend a lot of money on one of them. Likewise, it’s a bad idea to spend a lot of resources testing an idea of high plausibility because the information value (information/dollar) of the test is likely to be low. If you’re going to spend a lot of money, you should do it only when both possible outcomes (true and false) are plausible.

This graph explains why health science has so badly stagnated — every year, the Nobel Prize in Medicine is given for something relatively trivial — and why personal science can make a big difference. Health science has stagnated because it is impossible for professionals to study ideas of low plausibility. Yet every new idea begins with low plausibility. The Shangri-La Diet is an example (Drink sugar water to lose weight? Are you crazy?). We need personal science to find plausible new ideas. We also need personal science at the other extreme (high plausibility) to customize what we know. Everyone has their quirks and differences. No matter how well-established a solution, it needs to be tailored to you in particular — to what you eat, when you work, where you live, and so on. Professional scientists won’t do that. My personal science started off with customization. I tested various acne drugs that my dermatologist prescribed. It turned out that one of them didn’t work. It worked in general, just not for me. As I did more and more personal science, I started to discover that certain low-plausibility ideas were true. I’d guess that 99.99% of professional scientists never discover that a low-plausibility idea is true. Whereas I’ve made several such discoveries.

Professional scientists need personal scientists to come up with new ideas plausible enough to be worth testing. The rest of us need personal scientists for the sake of our health. We need them to find new solutions and customize existing ones.

 

 

 

Assorted Links

  • An Epidemic of Absence (book about allergies and autism)
  • Professor of medicine who studies medical error loses a leg due to medical error. “Despite calls to action by patient advocates and the adoption of safety programs, there is no sign that the numbers of errors, injuries and deaths [due to errors] have improved.” Nothing about consequences for the person who made the error that caused him to lose a leg.
  • Doubts about spending a huge amount of research money on a single project (brain mapping). Which has yet to produce even one useful result.
  • Cancer diagnosis innovation by somebody without a job (a 15-year-old)
  • Someone named Rob Rhinehart has greatly reduced the time and money he spends on food by drinking something he thinks contains all essential nutrients. Someone pointed out to him that he needs bacteria, which he doesn’t have. (No doubt several types of bacteria are best.) He doesn’t realize that Vitamin K has several forms. I suspect he’s getting too little omega-3. This reminds me of a man who greatly reduced how much he slept by sleeping 15 minutes every 3 hours. It didn’t work out well for him (his creativity vanished and he became bored and unhappy). In Rhinehart’s case, I can’t predict what will happen so it’s fascinating. When something goes wrong, however, I’ll be surprised if he can figure out what caused the problem.

Thanks to Amish Mukharji.

More Trouble in Mouse Animal-Model Land

Mice — inbred to reduce genetic variation — are used as laboratory models of humans in hundreds of situations. Researchers assume there are big similarities between humans and one particular genetically-narrow species of mouse. A new study, however, found that the correlation between human genomic changes after various sorts of damage (“trauma”, burn, endotoxins in the blood, and so on) and mouse genomic changes was close to zero.

According to a New York Times article about the study, the lack of correlation “helps explain why every one of nearly 150 drugs tested at huge expense in patients with sepsis [severe blood-borne infection] has failed. The drug tests all were based on studies in mice.”

This supports what I’ve said about the conflict between job and science. If your only goal is to find a better treatment for sepsis, after ten straight failures you’d start to question what you are doing. Is there a better way? you’d wonder. After twenty straight failures, you’d give up on mouse research and starting looking for a better way. However, if your goal is to do fundable research with mice — to keep your job — failures to generalize to humans are not a problem, at least in the short run. Failure to generalize actually helps you: It means more mouse research is needed.

If I’m right about this, it explains why researchers in this area have racked up an astonishing record of about 150 failures in a row. (The worst college football team of all time only lost 80 consecutive games.) Terrible for anyone with sepsis, but good for the careers of researchers who study sepsis in mice. “Back to the drawing board,” they tell funding agencies. Who are likewise poorly motivated to react to a long string of failures. They know how to fund mouse experiments. Funding other sorts of research would be harder.

In the comments on the Times article, some readers had trouble understanding that 10 failures in a role should have suggested something was wrong. One reader said, “If one had definitive, repeatable, proof that the [mouse model] approach wouldn’t work…..well, that’s one thing.” Not grasping that 150 failures in a row is repeatable in spades..

When this ground-breaking paper was submitted to Science and Nature, the two most prestigious journals, it was rejected. According to one of the authors, the reviewers usually said, ”It has to be wrong. I don’t know why it is wrong, but it has to be wrong.” 150 consecutive failed drug studies suggest it is right.

As I said four years ago about similar problems,

When an animal model fails, self-experimentation looks better. With self-experimentation you hope to generalize from one human to other humans, rather from one genetically-narrow group of mice to humans.

Thanks to Rajiv Mehta.

Web Browsers, Black Swans and Scientific Progress

A month ago, I changed web browsers from Firefox to Chrome (which recently became the most popular browser). Firefox crashed too often (about once per day). Chrome crashes much less often (once per week?) presumably because it confines trouble caused by a bad tab to that tab. ”Separate processes for each tab is EXACTLY what makes Chrome superior” to Firefox, says a user. This localization was part of Chrome’s original design (2008).

After a few weeks, I saw that crash rate was the only difference between the two browsers that mattered. After a crash, it takes a few minutes to recover. With both browsers, the “waiting time” distribution — the distribution of the time between when I try to reach a page (e.g., click on a link) and when I see it — is very long-tailed (very high kurtosis). Almost all pages load quickly (< 2 seconds). A few load slowly (2-10 seconds). A tiny fraction (0.1%?) cause a crash (minutes). The Firefox and Chrome waiting-time distributions are essentially the same except that the Chrome distribution has a thinner tail. As Nassim Taleb says about situations that produce Black Swans, very rare events (in this case, the very long waiting times caused by crashes) matter more (in this case, contribute more to total annoyance) than all other events combined.

Curious about Chrome/Firefox differences, I read a recent review (“Chrome 24 versus Firefox 18 — head to head”). Both browsers were updated shortly before the review. The comparison began like this:

Which browser got the biggest upgrade? Who’s the fastest? The safest? The easiest to use? We took a look at Chrome 24 and Firefox 18 to try and find out.

Not quite. The review compared the press releases about the upgrades. It said nothing about crash rate.

Was the review superficial because the reviewer wasn’t paid enough? If so, Walt Mossberg, the best-paid tech reviewer in the world, might do a good review. The latest browser review by Mossberg I could find (2011) says this about “speed”:

I found the new Firefox to be snappy. . . . The new browser didn’t noticeably slow down for me, even when many tabs were opened. But, in my comparative speed tests, which involve opening groups of tabs simultaneously, or opening single, popular sites, like Facebook, Firefox was often beaten by Chrome and Safari, and even, in some cases, by the new version 9 of IE . . . These tests, which I conducted on a Hewlett-Packard desktop PC running Windows 7, generally showed very slight differences among the browsers.

No mention of crash rate, the main determinant of how long things take. Mossberg ignores it — the one difference between Chrome and Firefox that really matters. He’s not the only one. As far as I can tell, all tech reviewers have failed to measure browser crash rate. For example, this review of the latest Firefox. ”I’m still a big Firefox fan,” says the reviewer.

Browser reviews are a small example of a big rule: People with jobs handle long-tailed distributions poorly. In the case of browser reviews, the people with jobs are the reviewers; the long-tailed distribution is the distribution of waiting times/annoyance. Reviewers handle this distribution badly in the sense that they ignore tail differences, which matter enormously.

Another browser-related example of the rule is the failure of the Mozilla Foundation (people with jobs) to solve Firefox’s crashing problem. My version of Firefox (18.0.1) crashed daily. Year after year, upgrade after upgrade, people at Mozilla failed to add localization. Their design is “crashy”. They fail to fix it. Users notice, change browsers. Firefox may become irrelevant for this one reason. This isn’t Clayton Christensen’s “innovator’s dilemma”, where industry-leading companies become complacent and lose their lead. People at Mozilla have had no reason to be complacent.

Examples of the rule are all around us. Some are easy to see:

1. Taleb’s (negative) Black Swans. Tail events in long-tailed distributions often have huge consequences (making them Black Swans) because their possibility has been ignored or their probability underestimated. The system is not designed to handle them. All of Taleb’s Black Swans involve man-made systems. The financial system, hedge funds, New Orleans’s levees, and so on. These systems were built by people with jobs and react poorly to rare events (e.g., Long Term Capital Management). Taleb’s anti-fragility is what others have called hormesis. Hormesis protects against bad rare events. It increases your tolerance, the dose (e.g., the amount of poison) needed to kill you. As Taleb and others have said, many complex systems (e.g., cells) have hormesis. All of these systems were fashioned by nature, none by people with jobs. No word means anti-fragile, as Taleb has said, because there exist no products or services with such a property. (Almost all adjectives and nouns were originally created to describe products and services, I believe. They helped people trade.) No one wanted to say buy this, it’s anti-fragile. Designers didn’t (and still don’t) know how to add hormesis. They may even be unaware the possibility exists. Products are designed by people with jobs. Taleb doesn’t have a job. Grasping the possibility of anti-fragility — which includes recognizing that tail events are underestimated — does not threaten his job or make it more difficult. If a designer tells her boss about hormesis her boss might ask her to include it.

2. The Boeing 787 (Dreamliner) has had battery problems. The danger inherent in use of a lithium battery has a long-tailed distribution: Almost all uses are safe, a very tiny fraction are dangerous. In spite of enormous amounts of money at stake, Boeing engineers (people with jobs) failed to devise adequate battery testing and management. The FAA (people with jobs) also missed the problem.

3. The designers of the Fukushima nuclear power plant (people with jobs) were perfectly aware of the possibility of a tsunami. They responded badly (did little or nothing) when their assumptions about tsunami likelihood were criticized. The power of the rule is suggested by the fact that this happened in Japan, where most things are well-made.

4. Drug companies (people with jobs) routinely hide or ignore rare side effects, judging by the steady stream of examples that come to light. An example is the tendency of SSRIs to produce violence, including suicide. The whole drug regulatory system (people with jobs) seems to do a poor job with rare side effects.

Why is the rule true? Because jobs require steady output. Tech reviewers want to write a steady stream of reviews. The Mozilla Foundation wants a steady stream of updates. Companies that build nuclear power plants want to build them at a steady rate. Boeing wants to introduce new planes at a steady rate. Harvard professors (criticized by Taleb) want to publish regularly. At Berkeley, when professors come up for promotion, they are judged by how many papers they’ve written. Long-tailed distributions interfere with steady output. To seriously deal with them you have to measure the tails. That’s hard. Adding hormesis (Nature’s protection against tail events) to your product is even harder. Testing a new feature to learn its effect on tail events is hard.

This makes it enormously tempting to ignore tail events. Pretend they don’t exist, or that your tests actually deal with them. At Standard & Poor’s, which rated all sorts of financial instruments, people in charge grasped that they were doing a bad job modelling long-tailed distributions and introduced new testing software that did a better job. S & P employees rebelled: We’ll lose business. Too many products failed the new tests. So S & P bosses watered down the test: “If the transaction failed E3.0, then use E3Low [which assumes less variance].” Which test (E3.0 or E3Low) was more realistic? The employees didn’t care. They just wanted more business.

It’s easy to rationalize ignoring tail events. Everyone ignores them. Next tsunami, I’ll be dead. The real reason they are ignored is that if your audience is other people with jobs (e.g., a regulatory agency, reviewers for a scholarly journal, doctors), it will be easy to get away with ignoring them or making unrealistic assumptions about them. Tail events from long-tailed distributions make a regulator’s job much harder. They make a doctor’s job much harder. If doctors stopped ignoring the long tails, they would have to tell patients That drug I just prescribed — I don’t know how safe it is. The hot potato (unrealistic risk assumptions) is handed from one person to another within a job-to-job system (e.g., drug companies market new drugs to the FDA and to doctors) but eventually the hot potato (or ticking time bomb) must be handed outside the job-to-job system to an ordinary Person X (e.g., a doctor prescribes a drug to a patient). It is just one of many things that Person X buys. He doesn’t have the time or expertise to figure out if what he was told about risk (the probability of very bad very rare events) is accurate. Eventually, however, inaccurate assumptions about tail events may be exposed when people without jobs related to the risk (e.g., parents whose son killed himself after taking Prozac, everyone in Japan, airplane passengers who will die in a plane crash) are harmed. Such people, unlike people with related jobs, are perfectly free to complain and willful ignorance may come to light. In other words, doctors cannot easily complain about poor treatment of rare side effects (and don’t), but patients and their parents can (and do).

There are positive Black Swans too. In some situations, the distribution of benefit has a very long-tailed distribution. Almost all events in Category X produce little or no benefit, a tiny fraction produce great benefit. One example is scientific observations. Almost all of them have little or no benefit, a very tiny fraction are called discoveries (moderate benefit), and a very very tiny fraction are called great discoveries (great benefit). Another example is meeting people. Almost everyone you meet — little or no benefit. A tiny fraction of people you meet — great benefit. A third example is reading something. In my life, almost everything I’ve read has had little or no benefit. A very tiny fraction of what I’ve read has had great benefits.

I came to believe that people with jobs handle long-tailed distributions badly because I noticed that jobs and science are a poor mix. My self-experimentation was science, but it was absurdly successful compared to my professional science (animal learning research). I figured out several reasons for this but in a sense they all came down to one reason: my self-experimentation was a hobby, my professional science was a job. My self-experimentation gave me total freedom, infinite time, and commitment to finding the truth and nothing else. My job, like any job, did not. And, as I said, I saw that scientific progress per observation had a power-law-like distribution: Almost all observations produce almost no progress, a tiny fraction produce great progress.

It is easy enough for scientists to recognize the shape of the distribution of progress per observation but, if you don’t actually study the distribution, you’re not going to have much of an understanding. Professional scientists ignore it. Thinking about it would not help them get grants and churn out papers. (Grants are given by people with jobs, who also ignore the distribution.) Because they don’t think about it, they have no idea how to change the “slope” of the power-law distribution (such distributions are linear on log-log coordinates). In other words, they have no idea how to make rare events more likely. Because it is almost impossible to notice the absence of very rare events (the great discoveries that don’t get made), no one notices. I seem to be the only one who points out that year after year, the Nobel Prize in Physiology/Medicine indicates lack of progress on major diseases. When I was a young scientist, I wanted to learn how to make discoveries. I was surprised to find that everything written on the topic — which seemed pretty important — was awful. Now I know why. Everything on the topic was written by a person with a job.

With long-tailed distributions of benefit, there is nothing like hormesis. If any organism has evolved something to improve long-tailed distributions of benefit, I don’t know what it is. Our scientific system handles the long-tailed distribution of progress poorly in two ways:

1. The people inside it, such as professional scientists, do a poor job of increasing the rate of progress, i.e., making the tails thicker. I think you can make the tails thicker via subject-matter knowledge (Pasteur’s “chance favors the prepared mind”), methodological knowledge (better measurements, better experiments, better data analysis), and novelty. Professional scientists understand the value of the first two factors, but they ignore the third. They like to do the same thing over and over because it is safer. Great for their careers, terrible for the rest of us.

2. When an unlikely observation comes along, the system is not set up to develop it. An example is Galvani’s discovery of galvanism, which led to batteries, which led to widespread electricity. This one discovery, from one observation, arguably produced more progress than all scientific observations in the last 100 years. Galvani’s job (surgery research) left him unable to go further with his discovery. (“Galvani had certain commitments. His main one was to present at least one research paper every year at the Academy.”) His research job left him unable to develop one of the greatest discoveries of all time. In contrast, Darwin (no job) was able to develop the observations that led to his theory of evolution. It took him 18 years to write one book, longer than any job would have allowed. He wouldn’t have gotten tenure at Berkeley.

After a discovery has been made, the shape of the benefit distribution changes. It becomes more Gaussian, less long-tailed. As our understanding increases, science becomes engineering, which becomes design, which becomes manufacturing. Engineering and design and making things fit well with having a job. Take my chair. Every time I use it, I get a modest benefit, always about the same size. Every time I use my pencil, I get a modest benefit, always about the same size. No long-tailed distribution.

Modern science works well as a way of developing discoveries, not making them. An older system was better for encouraging discovery. Professors mainly taught. Their output was classes taught. They did a little research on the side. If they found something, fine, they had enough expertise to publish it, but nothing depended on their rate of publication. Mendel was expert enough to write up his discoveries but his job in no way required him to do so. Just as Taleb recommends most of your investments should be low-risk, with a small fraction high-risk, this is a “job portfolio” where most of the job is low benefit with high certainty and a small fraction of the job is high benefit with low certainty. In the debate over climate change (is the case that humans are dangerously warming the planet as strong as we’re told?) it is striking that everyone with any power on the mainstream side of the debate (scientists, journalists, professional activists) has a job involving the subject. Everyone on the other side with any power (Stephen McIntyre, Bishop Hill, etc.) does not. People without jobs are much more free to speak the truth as they see it.

We need personal science (using science to help yourself) to better handle long-tailed distributions, but not just for that reason. Jobs disable people in other ways, too. Personal science matters, I’ve come to believe, for three reasons.

1. Personal scientists can make discoveries that professional scientists cannot. The Shangri-La Diet is one example. Tara Grant’s discovery of the effect of changing the time of day she took Vitamin D is another. For all the reasons I’ve said.

2. Personal scientists can develop discoveries that professional scientists cannot. Will there be a clinical trial of the Shangri-La Diet (by a professional weight-control researcher) in my lifetime? Who knows. It is so different from what they now believe. (When I applied to the UC Berkeley Animal Care and Use Committee for permission to do animal tests of SLD, I was turned down. It couldn’t possibly be true, said the committee.) Long before that, the rest of us can try it for ourselves and tell others what happened.

3. By collecting data, personal scientists can help tailor any discovery, even a well-developed one, to their own situation. For example, they can make sure a drug or a diet works. (That’s how my personal science started — testing an acne medicine.) They can test home remedies. By tracking their health with sensitive tests, they can make sure a prescribed drug has no bad side effects. Individualizing treatments takes time, which gets in the way of steady output. You have all the time in the world to gather data that will help you be healthy. Your doctor doesn’t. People who have less contact with you than your doctor, such as drug companies, insurance companies, medical school professors and regulatory agencies, are even less interested in your special case.