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 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.