Seth's Blog

A few weeks ago I blogged about a leukemia doctor’s disapproval of self-experimentation (“you won’t learn anything and others won’t learn from it, either”). What I wrote was reposted at The Health Care Blog, where it elicited this comment (by “rbar”):

Sigh. Mr Roberts did it again, he simply does not (want to) understand that anecdotal evidence is of little value (let me give you an example: I self experiment with traffic signals; I noted that I can considerable cut down on travel times when ignoring red lights and stop signs; there are no drawbacks whatsoever, no one get hurts, and even my gas mileage/carbon footprint got better) .

Individuals who have similar questions as Mr. Roberts should look up the following key words, because they may understand why controlled studies are far superior to anecdotal evidence:
-placebo effect
-regression to the mean
-misattribution error [apparently rbar means error in determining the cause of a change]
-self limited conditions/natural fluctuation of chronic conditions
-and in terms of drawbacks of experimentation: primum non nocere, and also the fact that anecdotal evidence adds relatively little to humanity’s knowledge base

Does all that mean that patients should not be well informed, active and making suggestions to their treating physicians? Of course absolutely not. Being knowledgeable about one’s condition is different from self experimentation. Is that intellectually challenging?

One reply to this comment said we should be aggregating data across patients. “I believe Mr. Roberts is alluding to the power of aggregating real-world data across patients to generate insights into what may and may not work, not to giving undue weight to any single anecdotal case.” No, I was looking at it from the point of view of the self-experimenting patient. If you have a health problem, and you can measure it often (daily, weekly) you can find out what works faster than your doctor — often much faster. You can test many more possible solutions. This is what Richard Bernstein taught the whole world of diabetes, starting in the 1960s, when he pioneered home blood glucose testing. Apparently rbar also objects to that.

Rbar’s comment is dismissive (“Sigh”, “Is that intellectually challenging?”) and partly obscure (“ignoring stop signs and stoplights” — huh?).  Because patients who self-experiment may make “misattribution errors” they shouldn’t self-experiment? That’s like saying because people may make reasoning errors they shouldn’t reason.

The true meaning of rbar’s comment may be hidden in his statement that it’s okay for patients to “make suggestions to their treating physician.” Which shows who he thinks should be boss in the doctor-patient relationship. When a patient self-experiments, the doctor is no longer boss. Maybe rbar is a doctor. Maybe he feels threatened by self-experimentation. If so, I hope he’s right.

More A later reply to rbar put it well: ” Your list of possible pitfalls . . . is similar to lists I remember seeing back in graduate school in various research handbooks. I do not see how you go from the fact that these effects and errors are possible to the conclusion that the whole endeavor isn’t worthwhile.”

In a recent post I wondered what’s a good word to describe the next step in economic progress after specialization — when making/doing X is done by the general public (not as a job) instead of just by paid specialists (as a job).  For example, the introduction of cheap cameras allowed the general public, not just professional photographers, to take pictures. Personal science is an example of such a shift, of course. Thank you for your many suggestions, such as laitization, deguilding, promethization, and several more. The combination of Keimpe Wiersma’s suggestion (DIY) and wobbly’s suggestion (deguilding) led me to DIYing and DIYization.

DIYing, I learned, is an existing word with a different meaning (to do DIY). Although ordinary DIY (Home Depot) is associated with men, women appear to use DIYing far more than men and they use it to describe traditionally feminine activities (see this). For example, there is a blog DIYing To Be Domestic by a woman. This is irrelevant to whether I use it — it’s just interesting.

DIYization is much rarer. It appears in a 2005 essay called “Scandinavian Dreams: DIY, Democratisation and IKEA” where it refers not to a change in an activity but to a change in society — toward more DIY. IKEA, says the essayist, is an example of “the DIYization of society.”

DIYing is shorter. DIYization is more self-explanatory, less likely to be confused with dying, and makes clearer the connection with specialization. Not to mention it is more pompous — more Veblenesque. In the last chapter of The Theory of The Leisure Class, Veblen used long rare words to say that academics show off their uselessness using by using long rare words.

Can you help me? I am looking for a word — maybe a new word — to describe the transformation of an activity from (a) something done only by trained specialists, as part/all of their job to (b) something done by the general public, not as a job. For example:

• word processing software has made producing an attractive manuscript something that you no longer need hire a secretary to do — you can do it yourself.
• digital cameras and software have made producing high-end photographs something you no longer need a professional photographer to make.
• When I was a graduate student I hired a professional to make publication-quality figures for my scientific papers. Now I make them myself.

The transition I am talking about is part of a longer historical sequence that goes like this:

1. Hobby
2. Part-time job
3. Full-time job
4. Specialization (= division of labor)
5. [new word goes here]

The best word I can think of is deprofessionalization. Unfortunately that has been used with a different meaning. Amateurization doesn’t work because amateur often means hobbyist. Popularization doesn’t work because the status of the activity has changed — from something done as part of a job to something done not as a job. It is one of several ways a job can change:

• More efficient. New tools, materials, etc., make it possible to do the same job in a shorter period of time or at lower cost.
• Higher quality. New tools, etc., make it possible to do a better job.
• More exclusive (= higher barriers to entry). Something (e.g., licensing requirements) makes it harder for others to compete with you.
• Less exclusive. Something (e.g., the Internet) makes it easier for others to compete with you.
• ???. People no longer need to hire you or someone like you to do what you do. They do it themselves.

I care because personal science (science done to help oneself) is an example. For a long time, non-trivial science was done only by professional scientists. Now it is being done by non-professionals.

More What about publicization? Or is it too ugly? I looked up democratization as a possibility but found this under “democratization of photography”:”Serious photography has gone from being the preserve of the reasonably well off to something that just about anyone can take up with minimal expense”. That isn’t what I mean here — that the price of something comes down. Hoipolloization is too long. What about massification?

Still More It really is DIY, I hadn’t thought of that. That exactly conveys the transition from job to non-job. DIYing (or should it be DIYization?) has a nice ring to it, is very short, is not pompous, and would not need to be defined. I also like promethization, deguilding, democratization, and deprofessionalization.

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.