Personal Science, Self-Experimentation, Scientific Method
The next meeting of the Make Yourself Healthy Meetup group is tomorrow (May 23, Thursday) at the Telegraph Ministry Center (5316 Telegraph, Oakland). Social time will start 6:30 pm, the meeting proper at 7:00 pm. It will last about 2 hours. Admission is $3, payable at the door, to cover the cost of renting the space.
The first speaker will be Robin Barooah, who will tell how he cured his RSI (Repetitive Strain Injury). What his doctors told him to do didn’t work.
I am a mother of five children. I live in Fremont, California. In 2009, my youngest child, who was three, was diagnosed with autism. The diagnosis came from her social and communication impairment and highly repetitive behavior. She did not play with other children. She had no imaginary play. She made no eye contact with anyone. She had no spontaneous language. She did not understand questions. Her language was restricted to repeating what she heard (echolalia). In other words, she didn’t use language to communicate. She could stack blocks for hours. She would line up toys and have a meltdown if you moved a toy out of line. Everything had to be according to her rules or she was in chaos. She had highly repetitive routines that would escalate into unrest or panic. For example, she would go to wash her hands, turn the water on, turn the water off, turn the water on, and so on. Each time through the routine she would get more upset that she couldn’t stop. These loop-like routines might last hours, typically ending because of exhaustion from crying. She also had episodes of absence (blank stares) that lasted 15-30 seconds.
My husband and I tried a number of popular therapies. We tried Applied Behavioral Analysis (ABA) for 3 months. She got worse; her loop-like routines occurred more frequently. We tried speech therapy for 6 months. It increased her vocabulary, but did not improve her communication in other ways. The third therapy we tried was auditory integration training. We did the full series twice, which took a total of 3 months. There was no improvement. Then she started going to a special-needs school, where each student is given an individualized program. At this point, she was 3.5 years old. Continue reading “Journal of Personal Science: One Child’s Autism Eliminated by Removal of Glutamate From Her Diet”
The next meeting of the Make Yourself Healthy Meetup group will be May 23 (Thursday) at the Telegraph Ministry Center (5316 Telegraph, Oakland). Social time will start 6:30 pm, the meeting proper at 7:00 pm. It will last about 2 hours. Admission is $3, payable at the door, to cover the cost of renting the space. The first speaker will be Robin Barooah, who will tell how he cured his RSI (Repetitive Strain Injury). The doctors he saw were no help.
The first meeting of the Make Yourself Healthy Meetup group happened last night in Berkeley. It went great. About 15 people attended. We heard four fascinating talks — five, if you count mine. About 10 people wanted to talk so there was far more material than time (the meeting lasted about 2 hours).
Here are brief recaps of the talks. Continue reading “Make Yourself Healthy Meetup Group: Report of First Meeting”
Thanks to Dave Lull and Ashish Mukharji.
As I blogged earlier, I’ve started a Meetup group called Make Yourself Healthy. It is about doing better than expert advice. Doing better than taking prescription drugs for a problem, for example. The first meeting is Wednesday, April 24, 6:00 pm to 7:30 pm, in the meeting room of the North Branch of the Berkeley Public Library (1170 The Alameda).
I’ve found ways to improve on expert advice. I’ve found new ways to lose weight, sleep better, and so on. More to the point, many other people have done this. I wrote about some of them for Boing Boing. The specific things they learned about how to be healthy — for example, Dennis Mangan’s discovery (or confirmation of someone else’s discovery) that megadoses of niacin eliminated Restless Leg Syndrome — are not just important in isolation but also as part of a pattern: showing that such a thing is possible. Their solutions were vastly better than what their doctors recommended. This is counter-intuitive. We don’t see this in other areas of life. We don’t see amateurs building better cars than professionals, for example. But it’s happening.
I believe two things about this:
1. The solutions will generalize. What Person X discoveres improves her health turn out to help with other problems. I started drinking flaxseed oil because it improved my balance. It turned out to improve my brain function measured in other ways. And it turned out to improve my gums. I don’t have lichen planus or geographic tongue, which xylitol can cure, but I am taking xylitol because I believe (backed up by research) it reduces plaque.
2. The methods will generalize — what you do that finds a solution to Problem X is worth trying with other problems. With me, self-experimentation is an example. When studying my acne, self-experimentation showed how to better than my dermatologist’s advice. Later, it helped me improve my health on other dimensions (weight, mood, sleep, etc.).
The Make Yourself Healthy Meetup group can spread the solutions, the methods, and the knowledge that such a thing is possible. It can encourage people to try to improve on expert advice and help them do so.
Encouraged by the success of the Quantified Self Meetup group, I have started a Meetup group called Make Yourself Healthy. It is about how non-experts — the rest of us — can improve on expert advice about health. The first meeting will be April 24 (Wed.) in the meeting room of the North Branch of the Berkeley Public Library, 6:00 pm to 7:30 pm.
The group is about solving your health problems yourself, before or after mainstream medicine fails to help or provides inferior solutions. Access to health information via the Internet makes this more and more possible; so does new technology, which make it easier to measure health problems.
The first important practitioner of Make Yourself Healthy was Richard Bernstein, a New York engineer with diabetes, who in the 1960s bought a new machine that could measure blood sugar with only a single drop of blood. Bernstein used it to measure his own blood sugar many times per day — in contrast to getting it measured once a month at a lab. What he learned from frequent measurements allowed him to stabilize his blood sugar level, which doctors’ advice had never managed to. His health greatly improved. His promotion of what he had done led to the glucometers you can find in any drugstore. Nowadays diabetics take self-measurement for granted.
I have managed to improve my health in many non-standard ways. Acne, sleep, mood, weight, and brain function, especially. On the face of it, you might think: He did a lot of self-experimentation and discovered cool stuff. At first, that’s how it looked to me. I wrote a paper called “Self-experimentation as a source of new ideas“. But that’s misleading. Self-experimentation wasn’t new, it was ancient. Yet my discoveries were quite new — quite different from what people already believed. What really led to my successes was: 1. Better information. Before the Internet, I spent thousands of dollars on a UC Berkeley library service called BAKER, which photocopied journal articles that I requested by phone and delivered the copies to my campus mailbox. Xerox machines made this possible. 2. The prison of professional science. There are so many things that professional scientists (such as medical school professors) cannot do. There are so many ideas they cannot test. They have left a lot to be discovered and it turns out that non-scientists (such as me — I was not a sleep researcher, a mood researcher, etc.) can discover at least some of it. In other words, I wasn’t successful just because I did self-experimentation, I was successful because I did wise self-experimentation. I chose wisely what to do.
Behind this Meetup group is my belief that anyone who does this — tries to do better than expert advice — probably can teach and learn from other people trying to do the same thing, even if their health issue is different from yours.
If you are coming to this Meetup and have experience (successful or unsuccessful) trying to improve on expert health advice, and are willing to share your experience, please contact me.