Lessons of This Blog (2nd of 2)

Yesterday I posted Kristen Marcum’s list of general rules she’d learned from this blog. (For example, “be skeptical of experts.”) Behind her list, I think there is one idea, slightly hidden from view:

non-experts can discover important things about health

By non-experts I mean people who are not health professionals. People who do not make a living from health research. By discover I mean learn from data for the first time, actually discover — in contrast to learn from an expert. By important I mean stuff that matters to many people. (It’s obvious that studying yourself you can help yourself.) I haven’t heard anyone else say this, although it isn’t far from the Quantified Self movement. 

The first example of this rule was the work of Richard Bernstein, an engineer with diabetes. In the 1960s, he pioneered home blood glucose testing, now enormously important. Another example, I hope, is my work. I used self-tracking and self-experimentation to find important new cause-effect relationships in several areas — new ways to sleep better or lose weight, for example. I believe my conclusions will turn out be true for many people, not just me, because they fit well with research done with other people and animals. I’m a professional scientist, which obviously helped, but not a health researcher.

Why is this rule true? I found it hard to explain even my discoveries. The first time I tried, I didn’t do well. I did better the second time.

I came to see that discoveries require several things — more precisely, rate of discovery is a product of several factors. Everyone sees that experts have several advantages over non-experts:

  1. more training (graduate school)
  2. more resources (equipment, grants, space, assistants, journals, specialized libraries, and so on)
  3. more hours per day (all working day)
  4. more experience (their entire working life)

What I’ve never seen pointed out is that non-experts have several advantages over experts:

  1. more time overall (with no pressure to publish, a non-expert can easily spend many years on one question)
  2. more freedom (no pressure to follow a party line, obey your boss or be popular)
  3. more motivation (non-experts want to improve their own health, or a loved one’s health; for health researchers it’s a job)
  4. ability to self-track and self-experiment (this is too humble for experts)

Because of my job, I was only slightly behind health experts in terms of their four advantages, and I was far ahead of them in terms of the four non-expert advantages. This explains why I discovered many things that experts had not managed to discover.

Once I had a reasonable understanding of what had happened, I saw there was no reason I should be the only one. As a professor, I had excellent library access, much better than most, but now, with the Internet, many people have comparable access to research. Supporting my prediction that I am not the only non-expert who can do this, I have found other non-experts who have made important discoveries. Tara Grant figured out that the time of day she takes Vitamin D made a big difference. Professional researchers have not yet figured this out. Katie Reid found that her autistic daughter completely recovered — autism symptoms completely gone — when all glutamate was removed from her diet. Professional autism researchers haven’t managed to cure even one case of autism, as far as I know. Stuart King figured out that a tablespoon of honey at bedtime greatly improved his sleep. No sleep or nutrition researcher has realized this.

In the 1940s, my mother’s mother sent my mother newspaper clippings about computers, of which, at the time, there were only a few. This is going to be important, she said. Let me continue the tradition by telling you this is going to be important.

When even a tiny fraction of non-experts become “health knowledge generators” (for lack of a better term) the world will change. Some of the reasons:

1. The IQ advantage. There are far more non-experts than health researchers. A factor of 100,000? Let’s say health researchers have an average IQ of 130. If you take 100,000 non-experts (mean IQ = 100, standard deviation = 15) the top IQ among them will be about 165.

2. Trust and generalizability. When a health expert advises you to do Treatment X (e.g., surgery), what should you think? Can you (a) trust him and (b) is what he says true for you? Any reader of this blog knows that health experts routinely overstate benefits and understate costs of the treatment they are promoting. Even if they are telling the whole truth, their advice is based, at best, on several studies. Is what those studies found — studying animals, or at best, other humans — true for you? When you study yourself  — for example, carefully measuring the effect of a drug — error due to distortions and differences from the study population go to zero.

3. Good and bad chemicals. We encounter thousands of chemicals, many of recent origin. How we react to them — do they help or hurt? — is determined by our genome (billions of possibilities) and environmental history (countless possibilities). Any sort of expert testing will be woefully incomplete. The danger in assuming that a chemical safe for most people is safe for you is illustrated by a woman who found her almost constant migraines were caused by household cleaning products and Katie Reid’s discovery that her daughter was very sensitive to glutamate (found in a large fraction of supermarket foods). That things claimed to be safe may be dangerous is illustrated by the Berkeley graduate student who became poisoned by mercury when he started grinding his teeth and my discovery that fermented tofu made me stupid for a few days. My experience with tofu and butter shows how a non-expert can do better than simply accept what experts say. My brain tracking, which anyone could do, detected previously-unknown or -unclear costs and benefits.

Our economy runs on specialization. We buy cars from car specialists, for example. Long ago, professionals had a monopoly on knowledge. To learn math, you had to pay a math teacher. Then came cheap printing and mass literacy and mathematics books and libraries. The same knowledge became not just free but widely available. Then came the Internet and Wikipedia and Google — even more available. But all this time, the source of the knowledge, its creation, was restricted to professionals. Only professionals (or rich amateurs, like Darwin) could “make” (or “mine”) the knowledge. Now that will change.

8 Replies to “Lessons of This Blog (2nd of 2)”

  1. Some experts are researching their own diseases or diseases of loved ones– it might be a good idea to take those experts more seriously.

    Seth: You’d think so, wouldn’t you? But in my experience these experts don’t do well. I can think of three examples: 1. Stanford molecular biologist who discovered he had diabetes. He cured it via exercise. Nothing special there, in spite of a lot of high-tech measurements. He noticed the diabetes the same way everyone else does, with blood sugar measurements. 2. Geneticist near Stanford whose daughter has a very rare genetic disease. Last time I checked, he had made no progress in reducing her symptoms. 3. Larry Smarr, who has Crohn’s. No progress on reducing the symptoms of Crohn’s, last time I checked.

    Do you know of other examples?

  2. Not only do non-experts not have pressure to toe the party line, they are also free to find solutions to problems that are non-patentable. There is a reason that doctors prescribe Boniva instead of prunes and Ambien instead of honey, even though the prunes and the honey are effective, cheaper and have no harmful side-effects.

    I recently read Manufacturing Depression by Gary Greenburg and highly recommend it. Psychiatrists are uninterested in treatment that does not use drugs.

    Seth: I agree. I would put it a bit differently. Non-experts are free to find solutions that do not provide income to health care professionals. A naturopath, for example, will rarely advise something they don’t sell. Lots of what they sell isn’t patentable.

  3. Terry Wahls– http://www.terrywahls.com/– a doctor with serious MS who developed a modified paleo diet which controls her symptoms and which has worked for other people with MS. (It doesn’t seem to work for some other people with degenerative diseases, which at least suggests that people in general aren’t completely ruled by confirmation bias.) The theory behind the diet is that it’s good for mitochrondria.

    1. I see, Terry Wahls is an example of a health care professional who has had good results trying to fix their own health problem. I agree.

  4. I believe another advantage that non experts have is that they are allowed to be generalists. They are able to make connections across different areas and disciplines, which is often how innovation and creativity comes about. They aren’t fenced in like experts. Experts, often for professional reasons, are not allowed to draw from disparate fields to make important connections and findings.

    1. “Experts, often for professional reasons, are not allowed to draw from disparate fields to make important connections and findings.”

      I haven’t noticed that. It’s true enough that they might not be curious about other fields. At Berkeley, in my experience, few faculty attended talks outside their field, but nothing prevented or discouraged them from doing so. I attended lots of talks in different fields. Nothing bad happened.

  5. I’m not suggesting that health professionals who work on their own problems will necessarily find solutions. You spent a long time working on your problems before anything useful turned up.

    However, I would expect that a health professional working on their own or a loved one’s problem is much less likely to publicize a solution which doesn’t work or has such severe side effects that it’s not worth using. There’s still the possibility that a solution which works for the health professional doesn’t apply to at least some people with similar problems, of course.

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