Seth's Blog

Bryan Castañeda, who lives in Southern California, told me this:

The law firm I work at specializes in toxic torts. We represent people who have been occupationally exposed to chemicals and are now sick, dying, or dead. Most of our clients have been exposed to benzene and developed some kind of leukemia. We sponsor various leukemia charities, walks, and other events. [On January 21, 2012] in Woodland Hills, CA, the Leukemia & Lymphoma Society held its first annual Blood Cancer Conference. Although the speakers were mainly doctors, it was a conference meant for laymen. The chair was an oncologist from UCLA Medical Center.

After introductory remarks and the keynote speaker, there were several breakout sessions. I attended a session on acute lymphoblastic leukemia and acute myeloid leukemia. The speaker was [Dr. Ravi Bhatia,] a doctor specializing in leukemia from City of Hope in Duarte, CA. His talk was almost exclusively about new drugs and clinical trials. Very dry and dull. Things got more interesting during the question period. At one point, [Dr. Bhatia] told an attendee not to experiment on his own because “you won’t learn anything and others won’t learn from it, either.”

I would have liked to ask Dr. Bhatia three questions:

1. What’s the basis for this extreme claim (“you won’t learn anything and others won’t learn from it”)? Ben Williams, a psychology professor at UC San Diego, wrote a whole book (Surviving “Terminal” Cancer, 2002) about taking an active approach when faced with a very serious disease (in his case, brain cancer). Likewise, the website Patients Like Me is devoted to (among other things) learning from the experimentation of its members. Lots of forums related to various illnesses spread what one person learns to others. MedHelp has many forums devoted to sharing knowledge.

2. What’s so bad about “learning nothing”? Why should that outcome stop one from trying to learn? It doesn’t seem like a good enough reason.

3. Do you have a bias here? In other words, what do you want? Do you prefer that your patients not self= experiment? Doctors may prefer that their patients not experiment for their (the doctors’) own selfish reasons. When a patient self-experiments, it makes their doctor’s job more complicated and makes the doctor less important. If Dr. Bhatia is biased (he wants a certain outcome), it may bias his assessment of the evidence.

Late last year, Tara Grant (aka Primal Girl) considered the possibility that taking Vitamin D3 has the same effect as sunlight exposure. For example, taking Vitamin D3 at 7 pm is like getting sunlight at 7 pm. This idea — with my advice about how to sleep well (get an hour of sunlight first thing in the morning) ringing in her ears – led her to try to improve her sleep by taking Vitamin D3 first thing in the morning. It worked:

I usually took my supplements mid-afternoon. I vowed to take them first thing every morning. If I forgot, I would not take the Vitamin D at all that day. I tried it the next day and that night I slept like a rock. And the next night. And the next. Days I forgot and skipped the D3, I still slept great. That was the only change I made to my lifestyle and my sleep issues completely resolved.

I called this “a stunning discovery” and have blogged about it several times. I recently asked Tara for details and an update. She replied:

I am so happy to hear that 1) other people didn’t make the connection easily so I’m not a little slow and that 2) there seems to be something to my discovery. I’ve had a few comments from people who have said it has worked for them too. So let me answer your questions:

[What type of Vitamin D3 do you take?]

I take Trader Joe’s brand of Vitamin D3, which is a 1000 IU gelcap, in olive oil. 180 capsules for $4.99. Best deal I’ve found. I tried the tablets years ago and they had no affect on me (even on 8000 units a day plus tanning twice a week my blood levels were only at 58.)

[Has your sleep remained solid?]

My sleep HAS remained solid. I have not had ONE night of bad sleep since I started paying attention to when I was taking my Vitamin D.

[How much do you take?]

I was initially taking 10,000 units a day. After about 2 months, I cut that back to 5000 units to see if there was a difference. I did not wake up quite as rested, but I still slept soundly through the night. On days that I increase my dosage, I sleep better, deeper and feel more rested the following morning. I’ve tried this several times, even when I’ve been spending the night away from home, and it has made a difference. I have also tried eating sugar shortly before bedtime and caffeine in the afternoon (both things that would always make my sleep restless in the past) and I still sleep well!! I’ve also thrown exercising into the mix to see if it makes a difference but it doesn’t change the quality of my sleep – it just makes me tired earlier in the evening. I continue to change my dosage randomly and monitor the results.

The blog Science-Based Medicine ran a long critical comment about my recent Boing Boing piece (“Tonsillectomy Confidential: doctors ignore polio epidemics and high school biology”) followed by a back-and-forth (my reply, their reply to my reply, on and on) in the comments.

The exchange had three curious features.

1. In Tonsillectomy Confidential, I described how Rachael critically evaluated what a naturopath told her:

Rachael and her son went to see a naturopath that a neighbor had recommended. The naturopath was especially knowledgeable about nutrition and supplements. After an hour interview, she suggested Vitamin D3 (5000 IU/day), a multivitamin, Vitamin C (500 mg/day), and powdered larch bark. Rachael searched for research about these recommendations. She found many studies that suggested Vitamin D might help. Her son is a pale redhead and used sunblock a lot. It was easy to believe he wasn’t getting enough Vitamin D. Because Vitamin D won’t work properly without other vitamins (called co-factors), a multivitamin was a good idea [Rachael discovered during her research]. Rachael found studies that implied that a multivitamin was very unlikely to be very harmful. She found few relevant studies about Vitamin C. Maybe extreme claims about its benefits had scared off researchers — “Linus Pauling burned that bridge,” said Rachael. But she took the Vitamin C recommendation seriously because the naturopath had made other reasonable recommendations, the recommended dose was not large, Vitamin C is easily excreted in urine (in contrast to building up in the body), and Rachael had never heard of anyone having trouble at that dose. The naturopath had said that larch bark had reduced ear infections in children with chronic ear infections. A little bit of theory supported this, Rachael found, but overall the larch-bark research was “dodgy,” she said.

This was described by the Science-Based Medicine critic (Steven Novella) as “blatantly not evidence-based”.

2. In my first reply to the criticism, I wrote:

In other words, there is some evidence supporting the value of larch bark (“early laboratory evidence”) and some evidence (“a more recent study in mice”) not supporting the value of larch bark. Given this, to say “available scientific evidence does not support claims . . .” is false. An accurate statement is that some evidence does and some evidence doesn’t.

This got the following reply from a second critic (David Gorski):

No, Seth. Note two words Steve used, “in humans.” Steve was quite correct. If there is only a preliminary animal study, even if positive, that does not support the efficacy of larch bark in humans.

Apparently Gorski thinks animals (e.g., rats) and humans share no DNA. A few sentences later, contradicting himself, he notes that animal studies are used as screening tests.

3. Finally there was this, from Steven Novella:

It is fine to search for information yourself, and no one here is advocating “blind trust” in anyone. We are all activist skeptics. But it is folly to substitute one’s own opinion for that of experts who have spent years mastering a subject.

What a lovely motto for this blog: “It is folly to substitute one’s own opinion for that of experts who have spent years mastering the subject.” And, after all that study, think animals and humans share no DNA.

Peter A. Lawrence is a British biologist who has written several papers about problems with the way biology and other areas of science are now done. In this interview a year ago he summarizes his complaints:

• Scientific publication “has become a system of collecting counters for particular purposes – to get grants, to get tenure, etc. – rather than to communicate and illuminate findings to other people. The literature is, by and large, unreadable.” There is far too much counting of papers.
• “There’s a reward system for building up a large group, if you can, and it doesn’t really matter how many of your group fail, as long as one or two succeed. You can build your career on their success.” If you do something on your own it is viewed with suspicion.
• There is too much emphasis on counting citations. “If you work in a big crowded field, you’ll get many more citations. . . . This is independent of the quality of the work or whether you’ve contributed anything. [There is] enormous pressure on the journals to accept papers that will be cited a lot. And this is also having a corrupting effect. Journals will tend to take papers in medically-related disciplines, for example, that mention or relate to common genetic diseases. Journals from, say, the Cell group, will favor such papers when they’re submitted.”
• Grant writing takes too much time — e.g., 30-40% of your time. “There is an enormous increase in bureaucracy – form
  filling, targeting, assessment, evaluations. This has gone right through society, like the Black Death!”
• “Science is not like some kind of an army, with a large number of people who make the main steps forward together. You need to have individually creative people who are making breakthroughs – who make things different. But how do you find those people? I don’t think you want to have a situation in which only those who are competitive and tough can
  get to the top, and those who are reflective and retiring would be cast aside.” I’ve said something similar: Science is like single ants wandering around looking for food, not like a trail of ants to and from a food source. The trail of ants is engineering.

I agree. I would add that I think modern biology is far too invested in the idea that genes cause disease and that studying genes will help reduce human suffering. I think the historical record (the last 30 years) shows that this is not a promising line of work — but modern biologists cannot switch course.

What explains the depressing facts Lawrence points out? I think it is something deep and impossible to change: Science and job don’t mix well. The demands of any job and the demands of science are not very compatible. Jobs are about repetition. Science is the opposite. Jobs demand regular output. Science is unpredictable. However, jobs and science  overlap in terms of training: Both benefit from specialized knowledge. They also overlap in terms of resources: More resources (e.g., better tools) will usually help you do your job better, likewise with science. So we have two groups (insiders — professional scientists — and outsiders — everyone else). Both groups have big advantages and big disadvantages relative to the other. In the last 50 years, the insiders have been “winning” in the sense of doing better work. Their advantages of training and resources far outweighed the problems caused by the need for repetition and predictability. But now — as I try to show on this blog — outsiders are catching up and going ahead because the necessary training and tools have become much more widely available (e.g., tools have become much cheaper). And, as Lawrence emphasizes, professional science has gotten worse.

A blog called Adventures in Nutritional Therapy (started March 2011) is about what the author learned while trying to solve her health problems via nutrition and a few other things. She usually assumed her health problems were due to too much or too little of some nutrient. She puts it like this: “using mostly non-prescription, over-the-counter (OTC) supplements and treatments to address depression, brain fog, insomnia, migraines, hypothyroidism, restless legs, carpal tunnel syndrome, and a bunch of other annoyances.” In contrast to what “the American medical establishment” advises. Mostly it is nutritional self-experimentation about a wide range of health problems.

Interesting things I learned from the archives:

1. Question: Did Lance Armstrong take performance-enhancing drugs? I learned that LiveStrong (Armstrong’s site) is a content farm. Now answer that question again.

2. “If you return repeatedly to a conventional doctor with a problem they can’t solve, they will eventually suggest you need antidepressants.”

3.  “When I mentioned [to Dr. CFS] the mild success I’d had with zinc, he said it was in my mind: I wanted it to work and it did. When I pointed out that 70% of the things I tried didn’t work, he changed the subject. Dr. CFS’ lack of basic reasoning skills did nothing to rebuild my confidence in the health care system.” Quite right. I have had the same experience. Most things I tried failed. When something finally worked, it could hardly be a placebo effect. This line of reasoning has been difficult for some supposedly smart people to grasp.

4. A list of things that helped her with depression. “Quit gluten” is number one.

5. Pepsi caused her to get acne. Same here.

6. 100 mg/day of iron caused terrible acne that persisted for weeks after she stopped taking the iron.

7. “In September 2008 I started a journey that serves as a good example of the limits of the American health care system, where you can go through three months, 15 doctor visits, $7,000 in medical tests, three prescriptions and five over-the-counter medications trying to treat your abdominal pain, and after you lose ten pounds due to said pain, you are asked by the “specialists” if you have an eating disorder.” I agree. Also an example of the inability of people within the American health care system to see those limits.  If they recognized that people outside their belief system might have something valuable to contribute, apparently something awful would happen.

8. Acupuncture relieved her sciatica, but not for long. “By the time I left [the acupuncturist's office] the pain was gone, but it crept back during my 30-minute drive home.”

9. Pointing out many wrongs does not equal a right. She praises a talk by Robert Lustig about evil fructose. I am quite sure that fructose (by itself) did not cause the obesity epidemic. For one thing, I lost a lot of weight by drinking it. (Here is an advanced discussion.) In other words, being a good critic of other people’s work (as Lustig may be) doesn’t get you very far. I think it is hard for non-scientists (and even some scientists) to understand that all scientific work has dozens of “flaws”. Pointing out the flaws in this or that is little help, unless those flaws haven’t been noticed. What usually helps isn’t seeing flaws, it is seeing what can be learned.

10. A list of what caused headaches and migraines. One was MSG. Another was Vitamin D3, because it made her Vitamin B1 level too low.

She is a good writer. Mostly I found support for my beliefs: 1. Of the two aspects of self-experimentation (measure, change),  change is more powerful. She does little or no self-tracking  (= keeping records) as far as I could tell, yet has made a lot of progress. She has done a huge amount of trying different things. 2. Nutritional deficiencies cause a lot of problems. 3. Fermented food is overlooked. She never tries it, in spite of major digestive problems. She does try probiotics. 4. American health care is exceedingly messed-up. As she puts it, “the American medical establishment has no interest in this approach [which often helped her] and, when they do deign to discuss it, don’t know what the #%@! they’re talking about.” 5. “Over the years I’ve found accounts of personal experiences to be very helpful.” I agree. Her blog and mine are full of them.

Thanks to Alexandra Carmichael.

More Her latest post mentions me (“The fella after my own heart is Seth Roberts, who after ten years of experimenting . . . “). I was unaware of that when I wrote the above.