Personal Science, Self-Experimentation, Scientific Method
Thanks to Carl Willat.
Ed Rickards, a retired lawyer and journalist, writes Duke Check, a blog about Duke University, which I enjoy reading even though I have no connection with Duke. It emphasizes scandals and bad governance but also praises. He started it in 2009. There have been plenty of scandals since then, including the Anil Potti cancer research fraud.
I recently asked him a few questions. Continue reading “How Things Begin: Duke Check”
Last week Time published an article about self-experimentation called “My Body, My Laboratory” by Eben Harrell that is now fully available on-line. I am quoted a few times.
I distinguish between two kinds of self-experimentation — part of your job (the usual kind) or self-help (what I do) — and it’s easy to put each of the examples in the article into one pile or the other. However, I think that if you go far enough into the future and look back, you will see three varieties:
1. Professional. Self-experimentation done as part of your job (e.g., doctor). A dentist testing a new anesthetic, for example. All famous examples are in this category.
2. Self-help. Self-experimentation done to improve your own life. Done by non-professionals. I call this personal science.
3. Combination of the two. A professional combines job skills and self-help. This is what I did. My job (experimental psychologist) gave my self-experimentation (about weight loss, sleep, mood, and health, all common self-help topics) a considerable boost.
Professionals (Category 1) have skills and resources. The self-helpers, the non-professionals (Category 2) have freedom and (greater) motivation. People in Category 3 have all four. To summarize this paper in three words, that really helps. Please imagine the Venn diagram — one circle (“Professional”), another circle (“Self-Help”), and area of overlap (“Me”).
It’s nauseating that John Yoo (a Berkeley law professor) is getting off with a slap on the wrist. The superficial and childish response to 9/11 was they killed us, let’s kill them. The supposedly adult response was we need to make sure this never happens again — by getting rid of terrorists. The real lesson I’ve never heard or read: here’s something inside all of us that is stronger than we realized. We must try even harder to suppress it. 9/11 meant that laws against torture should be strengthened.
The opposite happened — thanks in part to John Yoo. Now it’s clear there was a lot of torture at Guantanamo. It happened at a place called Camp No (as in “I have no idea what you’re talking about”). As I read this excellent article about the torture, I wondered how such journalism will survive as newspapers disappear. I was glad to see that the author, Scott Horton, is a lawyer, not a professional journalist. Just as my self-experimentation was essentially a hobby that I did in addition to my regular job (a Berkeley professor).
When Paulo Zamboni’s wife came down with MS (multiple sclerosis), he was in an unusual position: He was a professor of medicine. Not only did he have technical expertise, he was going to care far more than than most MS researchers about finding a cure. (Likewise, when I suffered from early awakening, I had both technical expertise and cared more about finding a solution than any sleep researcher.)
Using ultrasound to examine the vessels leading in and out of the brain, Dr. Zamboni made a startling find: In more than 90 per cent of people with multiple sclerosis, including his spouse, the veins draining blood from the brain were malformed or blocked. In people without MS, they were not. [emphasis added] . . . More striking still was that, when Dr. Zamboni performed a simple operation to unclog veins and get blood flowing normally again, many of the symptoms of MS disappeared. . . . His wife, who had the surgery three years ago, has not had an attack since. . .
The initial studies done in Italy were small but the outcomes were dramatic. In a group of 65 patients with relapsing-remitting MS (the most common form) who underwent surgery, the number of active lesions in the brain fell sharply, to 12 per cent from 50 per cent; in the two years after surgery, 73 per cent of patients had no symptoms.
Clearly Dr. Zamboni has discovered something very important. Perhaps no true health breakthrough would be complete without appalling responses from powerful people within the biomedical establishment. The American MS society issued a comment on these findings that the rest of us can marvel at. According to them, people with MS should not get tested for malformed or blocked veins!
Q: I have MS. Should I be tested for signs of CCSVI?
A: No, unless you are involved in a research study exploring this phenomenon, since at this time there is no proven therapy to resolve any abnormalities that might be observed, and it is still not clear whether relieving venous obstructions would be beneficial.
Persons with MS cannot be trusted with the dangerous knowledge of whether or not their veins are malformed or blocked! The Chairman of the Board of the National MS society is Thomas R. Kuhn. The President is Joyce M. Nelson. I would love to know how they justify this position. I wrote to the National MS society asking how Kuhn justifies this. The Canadian MS society is far less negative, perhaps due to public pressure.
Over at This Is MS, the National MS position is derided. Someone has made the shrewd observation that if there is something to Zamboni’s idea, persons with MS should get a red head after exercise more often than persons without MS and is collecting data to see if this is true. There seems to be something to it.
Not only is this a wonderful discovery but it is wonderful how the National MS Society can simply be ignored. There are now much better sources of information.
Thanks to Anne Weiss, Charles Richardson, and James Andwartha.