The Rules of the Tunnel by Ned Zeman

I loved Ned Zeman’s new book The Rules of the Tunnel, which I read during a long plane flight. Not only does it combine three of my favorite subjects — high-end magazines, bipolar disorder, and the crappiness of modern psychiatry — but it’s very well-written and revealing. I haven’t enjoyed a book so much in a long time.

Zeman once wrote for Spy, as did I. Long ago, I met him at a Spy party. I suppose I could have gotten a free copy of his book but I bought it. I wanted something great to read on the plane.

More About the Migraine Story Comments

My post at Boing Boing about a woman who figured out the sources of her migraines attracted lots of comments, some of them preventive stupidity (e.g., “anecdotes are not evidence”). I asked the subject of the story what she thought of it. Here’s what she said:

I feel that many people entirely missed the point when reading the original article. I wasn’t trying to communicate that a) all doctors are evil/drug-pushing/uncaring or b) my ‘natural’ solution would magically cure everyone. I have to admit, I’m a little tired of both sides of that old ‘Real Science vs. Natural Healing’ argument anyway. In my case, at least, both extremes are obvious oversimplifications of years of my life that were a very trying, difficult struggle for me.

I am quite aware that the number of drugs I had been tried on was absurd (and layering them as was done: some to ‘prevent’, some to treat as needed, etc, definitely did not help. How can you distinguish what works? You can’t). The armful of drugs to “try until one works” left me dumbfounded for that very reason. At the same time, without the help of a doctor (who happened to be a naturopath, but that is beside the point) who was willing to take a look at my data and listen and apply what she knew, I’d never have reached the stable, much healthier point I’m at now. She hit on a pattern that made a significant difference. One that I wouldn’t have known how to help had I even seen it, because I’m not a doctor.

I believe the take-away message from my story ought to be simply: take charge of your health. I’m also well-aware that this isn’t a new message.
Nevertheless, if you have migraines, there’s only one person who wants them solved more than anyone else in the world, and that’s you. So tracking, I believe, is necessary.

As for my self-experimenting on removing harsh chemicals: so what? It made (and continues to make) a significant difference for me. Perhaps it is placebo, perhaps it’s a sensitivity. I have to say, the allegations that ‘spreading lies about how cleaners cause migraines cause doctors to have to clean up the mess’ strike me as particularly amusing because, with a touch of further digging, one quickly realises that switching to a fragrance-free, SLS-free, paraben-free cleaner isn’t exactly the kind of thing that lands people in the hospital.

I don’t care to argue about so-called natural living. Annie B. Bond’s story (and if I’m tooting horns for anyone, it’s her) and contributions to various websites made me start to wonder about the things I took for granted in the world around me and their impact on my health. If reading my story gave someone else a moment’s pause to consider what had changed in their environment along with the return or start of a health issue, well. I’m the first to admit that correlation is not causation. The science isn’t “perfect”: you don’t live in a lab. To my mind, that’s poor reason to give up before trying. It’s a terrible reason to give up before even considering. Critical thinking about your life, habits, environment, health, and how they intersect is not wasted thinking.

In any case, I have to admit, the only thing that surprised me is how willing people are to get into the arguments. I’ve commented on the natural-vs.-real-science bit above; the anecdotes-don’t-make-good-research theme is really an equally old and equally tedious argument to have with someone (my current faculty still tries to balance on the qualitative vs. quantitative data debate). For those who care, then, I hope they can come to consider this a piece of a much larger, multivariate puzzle of “everyone’s health”. Migraine sufferers, as far as I know, don’t have a “patients-like-me” site dedicated to them. Even if you get nothing else out of a story, you should get a sense of community. Other people are also going through what you’re going through- whatever the cause, whatever the outcome.

One person helped by the Boing Boing story. My comment on the comments.

Deborah Estrin on Top and Bottom versus Middle

Deborah Estrin is a computer science professor at UCLA. Commenting on my recent post Top and Bottom versus Middle: Schools, China, Health? she said “amen to that”.

I asked her why she agreed. Because she sees the same thing a lot, she said. In particular, performance metrics are often devised by people in the middle, and those metrics tend to serve their interests — and not the interests of everyone else. She gave three examples: 1. Fee for service. Doctors are paid per office visit and per surgery, for example. The bad effects of this are obvious. For example, surgeons are pushed to recommend ill-advised surgeries. 2. Financial instruments, such as derivatives. They were sold to outsiders as ways to reduce risk but we all now know they had the opposite effect. As Michael Lewis puts it, “extremely smart traders inside Wall Street investment banks devise deeply unfair, diabolically complicated bets, and then send their sales forces out to scour the world for some idiot who will take the other side of those bets.” 3. Publications. Professors are rated and promoted and to some extent paid based on how many publications they produce. This pushes them toward “safe” projects that are likely to produce a publication within a reasonable time and away from harder, more important problems.

When you measure yourself you can use whatever metric you want — and thereby a metric that serves your interests.

 

 

More Migraine Headaches Caused by Cleaning Products: From N=1 to N=2

At Thursday’s Quantified Self Silicon Valley Meetup (where I gave a talk called QS + Paleo = ?), Alexandra Carmichael introduced herself with the three words “no”, “headache”, and “today”. About five days earlier, she had started having migraine headaches every day. Before that, she hadn’t had a migraine headache in a year. After the headaches began, her husband, having read my Boing Boing story (about a woman whose migraines were mostly from cleaning products), suggested that her headaches might be caused by the Febreze they had just started using. They stopped using it. Because it can linger in carpets, etc., they cleaned their whole apartment with vinegar and baking soda, to get rid of all traces. That’s when Alexandra’s headaches stopped. When they started using Febreze, one of their daughters became very cranky. After they stopped using it and cleaned their apartment, she returned to her usual self.

Other people have found that Febreze gives them migraines. For example, R. Haeckler:

[Febreze] gives me terrible migraines. . . . Whenever I go to someone’s house who uses it I get a headache almost immediately that lasts the rest of the night.

And this woman (“No Febreze EVER. Gives me a headache and makes me dizzy”).

This is a good example of why n=1 experimentation is so important. The woman I wrote about for Boing Boing (Sarah) figured out, beyond any doubt, that certain cleaning products caused migraines. Yes, Sarah’s results were unusual. They “don’t generalize” to most people in the sense that most people don’t get migraines from cleaning products. But, as Alexandra’s story shows, they were still helpful — they helped Alexandra avoid migraines.

My writing about n=1 experimentation has emphasized learning widely-applicable truths — how to lose weight, sleep better, and so on. But this other use — learn stuff that is true only for you and perhaps a small subset of people (1%?) — is also important. Sarah’s n=1 experimentation doesn’t fit in the standard healthcare system. It was not suggested or encouraged by her doctors. No professor or researcher could write a paper about it — it’s too small. But it made a difference — first, to herself, now, to Alexandra. The results of n=1 experiments can be spread, however, in the new patient communities, such as the ones at PatientsLikeMe, MedHelp, and CureTogether (started by Alexandra and her husband).

When I submitted for publication my long self-experimentation paper, one of the referees decided he would find out if fructose water would help him lose weight (one of my examples). He discovered that fructose water made his fingers ache — he had a sensitivity to fructose he hadn’t known about. In his review, he said that these sorts of individual differences were not an argument against my method but actually favored it: We need n=1 experiments to fully understand human variation in health.

How Rare My Heart Scan Improvement?


In 2009, I had a heart scan — a three-dimensional X-ray. The scan was used to calculate an Agatston score, a measure of arterial plaque. Higher scores mean a higher risk of heart attack. A few months after that, I discovered that butter improves how fast I do arithmetic.

Because butter was good for my brain, I started eating half a stick of butter (66 g) every day. Surely the butter was improving overall brain function. The effect of butter on the rest of my body I didn’t know. However, I thought it was highly unlikely that a food that greatly improves brain function is going to damage the rest of the body. The food you eat, after digestion, goes to the whole body (leaving aside the blood-brain barrier). Every part of the body must have been optimized to work well with the same food.

As I have posted earlier, I had a second heart scan, producing a second Agatston score, about a year after the first one. Amazingly, the second score was better (lower) than the first score. The woman in charge of the testing center said this was very rare — about 1 time in 100. The usual annual increase is about 20 percent.

Now I have gotten more information about the annual rate of change in Agatston scores. The graph above (thanks to Harry Rood) shows data from 40 people who listed their scores at the Track Your Plaque site. It is based on pairs of consecutive scores: it plots change versus level (average?). Because some people provided more than two scores, the data allowed 77 points to be plotted. My two scores were 38 (log 38 = 1.58) and 29 (log 29 = 1.46). So the decrease in log units was 0.12. If you look at the graph, you can see what an outlier this is — as I was told, it really is about 1 in 100.

Here we have the conjunction of two unusual things: 1. Eating half a stick of butter per day. Almost no one eats so much butter. 2. An extremely rare drop in the Agatston score over the same period. A principle of reasoning called Reichenbach’s Common Cause Principle says if two rare events might reflect cause and effect, they probably do. You can think of it like this: Lighting doesn’t strike twice in one place for two different reasons. Indeed, there is other evidence that high levels of saturated fat cause heart-scan improvement (even though this contradicts everything you’ve been told). Mozzafarian et al. (2004) found that in postmenopausal women, “a greater saturated fat intake is associated with less progression of coronary atherosclerosis.” So it is quite plausible that my butter intake improved my Agatston score.

Assorted Links

Harvard Psychiatrist Joseph Biederman and Parents: “Should Be Left in a Room Together”

Joseph Biederman is a professor of psychiatry at Harvard. He recently received a far-too-mild sanction for behavior that included this:

Biederman was then placed in charge of the institute and began a study of 40 children between 4 and 6 years old who were given Risperdal [made by Johnson & Johnson] and Lilly’s Zyprexa, another antipsychotic. At the time, Harvard and MGH [Massachusetts General Hospital] rules forbid researchers from running trials with [drugs] if they receive more than $10,000 from a company that makes the drug.

It was eventually revealed that Biederman had received at least $1.6 million from drug companies, including far more than $10,000 from Johnson & Johnson and far more than $10,000 from Lilly. One comment on the quoted article made the excellent point that bipolar disorder had a usual onset age of onset of 18 years or more and had never been found in young teenagers (e.g., 14-year-olds). Yet Biederman suddenly claimed it appeared in 6-year-olds. In a good expression of how I feel about Biederman’s behavior, another comment said he should “be left alone in a room with the parents of the children [he] treated”.

Worse Than Placebo? Forest Laboratories’s Shameful Marketing


While Forest [Laboratories] applied to the FDA for pediatric use of Celexa [the anti-depressant] and was eventually denied, the company admitted it had marketed the drug to doctors by hiring speakers to tout its benefits for young patients. Forest also admitted it had suppressed the negative results of research in Europe that found Celexa was no more effective in treating depressed children and adolescents than a sugar pill. Fourteen young patients in that study attempted suicide or contemplated suicide, compared with five in the placebo group, court records show.

From this article. Is Forest Laboratories worse than other big drug companies? Probably not. What’s horrible is how this sort of thing — suppression of negative results — keeps happening. It suggests that the evaluation of drugs should be taken entirely out of the hands of drug companies.

Assorted Links

Thanks to Dennis Mangan.

Marcia Angell on Psychiatry: A Train Wreck

Marcia Angell, a former editor of JAMA, may be the most prominent critic of drug companies. The most recent two issues of the New York Review of Books contain a two-part critique by her of psychiatry. I liked Part 1 because she described the excellent work of Irving Kirsch (The Emperor’s New Drugs). Part 2, however, is a disaster.

She goes on and on about the evils of the DSM s — the diagnostic manuals of psychiatry. Improving the reliability of diagnosis is playing into the hands of the drug companies, she seems to say. She complains that the number of diagnoses is increasing. Well, yes, all diagnostic systems get larger over time. This is a good thing; if you don’t have a name for a problem, it is hard to do cumulative research about it and hard to communicate research results to everyone else. She complains, apparently, that new categories are being added:

There are proposals for entirely new entries, such as “hypersexual disorder,” “restless legs syndrome,” and “binge eating.”

She does not say why this is bad. Maybe she thinks it’s obvious. It isn’t obvious to me. Diagnostic categories help researchers and doctors and the rest of us communicate. For example, Dennis Mangan’s research shows why it is a good idea for the term restless legs syndrome to have an agreed-upon meaning.

She complains that the DSM doesn’t have enough “citations”:

There are no citations of scientific studies to support its decisions. That is an astonishing omission, because in all medical publications, whether journal articles or textbooks, statements of fact are supposed to be supported by citations of published scientific studies. (There are four separate “sourcebooks” for the current edition of the DSM that present the rationale for some decisions, along with references, but that is not the same thing as specific references.)

Please. This is clueless. A diagnostic manual is a dictionary. It assigns meanings to diagnostic categories. You can make a useful dictionary without “citations of scientific studies”. Long before you can do scientific studies about the best way to define dog you can come up with a definition of dog that is better than nothing.

She ends her review with this:

Above all, we should remember the time-honored medical dictum: first, do no harm (primum non nocere)

Gag me with a spoon. Time-honored? Doctors — with the support of JAMA, not to mention the rest of the health-care establishment — continually prescribe drugs with bad side effects and high prices and suppress innovative alternatives. (Not only that. My own surgeon recommended a dangerous surgery of no clear value.) How they can claim to do no harm escapes me.

Sure, psychiatry is awful. For a long time psychiatrists rallied around a transparent intellectual fraud (Freud and his offshoots). Now they rally around a less transparent intellectual fraud (neurotransmitter theories of mental illness). Psychotherapists and their wacky theories and no-more-effective treatments are no better so I wouldn’t blame the drug companies for the underlying problem. I put the problem like this: Our health care system consists of a very large number of people, many with very large salaries, who must get paid. Being human, they strongly oppose any progress that would reduce their salary or influence or, heaven forbid, eliminate their job. Because of them, many promising lines of research, such as prevention via environmental change or cure via nutrition, are completely or almost completely ignored. This is the fundamental reason Angell’s critique is so bad: She is part of the problem. She is very smart, but she’s been brainwashed (“ primum non nocere“!). She utterly ignores the fact that we don’t know what causes depression, what causes schizophrenia, what causes autism, and so forth. Only when we learn what causes these and other mental disorders will we be in a good position to improve our mental health.