ADHD Experts Have a Bad Case of Gatekeeper Syndrome

Gatekeeper syndrome afflicts many many healthcare professionals. People with gatekeeper syndrome dismiss or ignore any solution that does not involve them (or someone like them) being a gatekeeper and charging “toll”, i.e., making money. When I was a teenager, I had acne. None of the dermatologists I saw showed any interest in what caused it or even seemed to understand it was possible to learn the cause. All of them prescribed drugs (antibiotics) so powerful I had to see them again and again to get the prescription refilled. That’s garden-variety gatekeeper syndrome.

A recent New York Times article about Attention Deficit Hyperactivity Disorder (ADHD) illustrates gatekeeper syndrome among professionals from whom you might expect better. The article describes ADHD experts at various universities wringing their hands: Did we overemphasize drugs at the expense of “skills training”?

Some authors of the [1999] study — widely considered the most influential study ever on A.D.H.D. — worry that the results oversold the benefits of drugs, discouraging important home- and school-focused therapy and ultimately distorting the debate over the most effective (and cost-effective) treatments.

What about finding the cause(s) of ADHD? And getting rid of it/them? Maybe that would be a good idea? None of the experts quoted in the article even seems aware this is possible.

When an ordinary psychotherapist or doctor has gatekeeper syndrome, I think they’re just a foot soldier. The experts in the Times article are not foot soldiers. They’re generals. They are professors at world-famous universities, such as UC Berkeley and McGill, with enormous influence.  (One is a former colleague of mine, Stephen Hinshaw.) They don’t need to see patients and dispense treatments to make a living. They have assured income (tenure) and prestige. They enjoy freedom of thought.

Too bad they don’t use their freedom and prestige to better help the children they study and the tens of millions of children who will be diagnosed with ADHD until someone (not them, apparently) figures out what causes it. Instead, they study who should get the revenue stream that each new diagnosis provides.

Thanks to Alex Chernavsky.

The American Dietetics Association Wants No Competition

Michael Ellsberg has an excellent article about the American Dietetic Association’s attempts to make it illegal for anyone they haven’t approved to give nutritional advice. In this document, they are frank that this is their goal. After Ellsberg drew attention to it, it was taken down. I look forward to learning why it was taken down.

The Washington State chapter of the ADA, now called the Washington State Academy of Nutrition and Dietetics, is responsible for taking down the document. The organization has this mission statement:

Empowering the people of Washington to improve health with safe, effective and reliable food and nutrition information.

Our Vision:  Optimize the health and well being of Washington State individuals through food & nutrition.

Our Mission:  Empower members to be Washington State’s food and nutrition leaders.

Long ago, in the civil rights or suffrage movements, for example, empowerment meant removal of barriers. This organization preaches empowerment by creation of barriers. Their empowerment is someone else’s disempowerment.

No Cheap Remedies: A Guiding Principle of Modern Health Care

I blogged earlier that a guiding principle of our health care system is first, let them get sick. Show no interest in prevention or environmental causes, thus ensuring that people will get sick and become desperate for remedies, which you (health care provider) can charge lots of money for. An example of the disinterest in prevention is that schools of public health, which do considerable prevention research, get a tiny fraction (1%?) of the money spent on medical schools, which never do prevention research. As they say, an ounce of prevention is worth a pound of cure — and the government and other powerful players invest exactly the opposite of what this common-sense wisdom implies. You know the term war profiteering. Modern heath care is sick profiteering.

It is profiteering, not ignorance, because another guiding principle of modern health care is no cheap remedies. Along with zero interest in prevention, there is zero interest in cheap remedies, such as dietary ones. Doctors usually prescribe drugs or surgery. Both are expensive. Surely doctors are intelligent, but this principle makes them look stupid: They ignore or dismiss cheap remedies, no matter what. At Boing Boing I wrote about two examples. Sarah suffered from frequent migraines. Her doctors wanted to try one drug after another and do expensive tests. No matter how useless the tests and drugs — Sarah tried 30 drugs — her doctors acted unaware of other possibilities, such as looking for environmental triggers. Reid Kimball, who had Crohn’s Disease, found a diet that worked. He told a UCSF doctor how well it worked. I don’t think you can manage Crohn’s with diet, said the doctor. As if he hadn’t understood what Reid had said.

My self-experimentation is a reaction to this state of affairs. It is a way to test cheap remedies. I started self-experimentation about sleep (I woke up too early) because I knew a doctor would simply prescribe a drug. I didn’t want to take a drug for the rest of my life. You cannot easily do self-experimentation on prevention (e.g., compare how many colds you get with Regimen A versus Regimen B) but, no surprise, there is great overlap between cheap remedies and prevention. I found various cheap safe ways to sleep better — and I stopped getting colds. Not only does omega-3 make my brain work better, it prevents gum disease. I eat butter to make my brain work better, and I suspect it prevents heart attacks. What’s that? Someone told you butter is evil? That’s another consequence of our deeply messed-up health care system: When the people at the center of the system, the ones with the most power and prestige, promote twisted self-serving ideas (e.g., Harvard psychiatry professor Joseph Biederman and his advocacy of giving powerful drugs to six-year-olds), these ideas spread outward to everyone else, who believe and repeat them. I was no different.  When my self-experimentation starting reaching conclusions utterly different than what I’d been told (e.g., I found that breakfast is bad and sugar can cause weight loss, I was stunned. I’d heard a thousand times that breakfast is good and sugar is fattening.

Gatekeeper syndrome.

Marcia Angell on Psychiatry: A Train Wreck

Marcia Angell, a former editor of JAMA, may be the most prominent critic of drug companies. The most recent two issues of the New York Review of Books contain a two-part critique by her of psychiatry. I liked Part 1 because she described the excellent work of Irving Kirsch (The Emperor’s New Drugs). Part 2, however, is a disaster.

She goes on and on about the evils of the DSMs — the diagnostic manuals of psychiatry. Improving the reliability of diagnosis is playing into the hands of the drug companies, she seems to say. She complains that the number of diagnoses is increasing. Well, yes, all diagnostic systems get larger over time. This is a good thing; if you don’t have a name for a problem, it is hard to do cumulative research about it and hard to communicate research results to everyone else. She complains, apparently, that new categories are being added:

There are proposals for entirely new entries, such as “hypersexual disorder,” “restless legs syndrome,” and “binge eating.”

She does not say why this is bad. Maybe she thinks it’s obvious. It isn’t obvious to me. Diagnostic categories help researchers and doctors and the rest of us communicate. For example, Dennis Mangan’s research shows why it is a good idea for the term restless legs syndrome to have an agreed-upon meaning.

She complains that the DSM doesn’t have enough “citations”:

There are no citations of scientific studies to support its decisions. That is an astonishing omission, because in all medical publications, whether journal articles or textbooks, statements of fact are supposed to be supported by citations of published scientific studies. (There are four separate “sourcebooks” for the current edition of the DSM that present the rationale for some decisions, along with references, but that is not the same thing as specific references.)

Please. This is clueless. A diagnostic manual is a dictionary. It assigns meanings to diagnostic categories. You can make a useful dictionary without “citations of scientific studies”. Long before you can do scientific studies about the best way to define dog you can come up with a definition of dog that is better than nothing.

She ends her review with this:

Above all, we should remember the time-honored medical dictum: first, do no harm (primum non nocere)

Gag me with a spoon. Time-honored? Doctors — with the support of JAMA, not to mention the rest of the health-care establishment — continually prescribe drugs with bad side effects and high prices and suppress innovative alternatives. (Not only that. My own surgeon recommended a dangerous surgery of no clear value.) How they can claim to do no harm escapes me.

Sure, psychiatry is awful. For a long time psychiatrists rallied around a transparent intellectual fraud (Freud and his offshoots). Now they rally around a less transparent intellectual fraud (neurotransmitter theories of mental illness). Psychotherapists and their wacky theories and no-more-effective treatments are no better so I wouldn’t blame the drug companies for the underlying problem. I put the problem like this: Our health care system consists of a very large number of people, many with very large salaries, who must get paid. Being human, they strongly oppose any progress that would reduce their salary or influence or, heaven forbid, eliminate their job. Because of them, many promising lines of research, such as prevention via environmental change or cure via nutrition, are completely or almost completely ignored. This is the fundamental reason Angell’s critique is so bad: She is part of the problem. She is very smart, but she’s been brainwashed (“primum non nocere“!). She utterly ignores the fact that we don’t know what causes depression, what causes schizophrenia, what causes autism, and so forth. Only when we learn what causes these and other mental disorders will we be in a good position to improve our mental health.




Comment on “Morning Faces Therapy For Bipolar Disorder”

In yesterday’s post, a friend of mine with bipolar disorder told how he used my faces/mood discovery. It allowed him “to enjoy life and relate to others in ways that I never could my entire life,” he wrote. Partly because it allows him to stop taking the usual meds prescribed for bipolar disorder, which have awful side effects.

What do I think about this?

Continue reading “Comment on “Morning Faces Therapy For Bipolar Disorder””

“A Great Change is Coming” (part 1 of 2)

In an earlier post, I wrote “A great change is coming” — meaning a great improvement in health. It will be due to better ideas. Let’s call the new ideas evolutionary thinking. They will replace gatekeeper thinking. With gatekeeper thinking, which began with shamans,  you need to extract payment from sick people. Remedies and associated ideas that don’t allow this are ignored. Gatekeeper thinking pervades not only mainstream medicine but also clinical psychology, alternative medicine, and a zillion advertisements. Everyone in those fields, like the rest of us, needs to make a living. The possibility that they are doing so at the expense of the rest of us — by suppressing innovation — is impolite to bring up. Perhaps the person you are speaking to has a brother who’s a doctor. And for an enormously long time there was no alternative. A sick person doesn’t have time to do research, even if that were possible. They are forced to rely on gatekeepers, who are interested only in certain types of remedies.

Now there is an alternative — now just a glimmer, but surely growing. It has several dimensions. One is the sort of research involved. At one extreme of that dimension is original research — for example, my discovery that breakfast caused my early awakening. Gatekeeper thinking had no interest in such ideas. You could not charge for something that simple.  I wrote about my discovery, with plenty of data. Anyone with web access can read it. At the other extreme of that dimension is “library research” — usually web search. An example is Dennis Mangan searching for possible cures for his mom’s Restless Leg Syndrome (RLS) and discovering persuasive stories about niacin. Again, there was no mainstream research about niacin for RLS. Anyone with web access can read what Dennis found. So for these two disorders — early awakening and restless leg syndrome — there is now a practical alternative to consulting (and paying) an expert. This isn’t repackaged folk wisdom or home remedies or someone opining. There is clear-cut data and theory involved. In the case of breakfast and sleep, it makes evolutionary sense that food would cause anticipatory activity. Likewise, the case for megadose vitamins makes biochemical sense, as Bruce Ames and his colleagues explained. You can judge for yourself.

Another dimension of this emerging space is the simplicity of the treatment. In my breakfast example, I established cause and effect with just one change: stopping breakfast. Dennis’s example also involved a simple change: megadose niacin. In contrast, Aaron Blaisdell found his sun sensitivity went away after he made many dietary changes. If you have sun sensitivity you will find it harder to duplicate what Aaron did than what Dennis or I did, but you can still come close and in any case it is a big improvement over the previous best treatment, which was to avoid the sun.

In all three cases — early awakening, RLS, and sun sensitivity — there was no gatekeeper approval. (My article with my breakfast discovery was peer-reviewed but appeared in a psychology journal rather than a medical one). In all three cases, the solution was excellent — cheap, fast, highly effective, no side effects — compared to prescription drugs (e.g., for depression). The sort of solutions that gatekeeper thinking doesn’t find. In all three cases, you don’t need to go through a gatekeeper to learn about them.

In a later post I’ll describe why I think this emerging solution space will soon become far more important.

Widespread Loneliness

I’m fond of arguing that the Ten Commandments was a very political document. Notice it’s aimed at men? Notice that women aren’t protected, much less children? That’s because men had all the power. No one has said they already knew this or that I was wrong.

I thought of the Ten Commandments when a friend from Amsterdam wrote me about a recent experience of hers:

A very old man asked me to come to his apartment, and he would donate a bike to the project.  I went over to get it, and it was half a bike, and it was locked to a pole…had obviously been there for years.  The temperature was well below zero.  It became clear that he was in fact super-lonely, and torn between usual Dutch suspicion of strangers… and desperation for human contact.  He finally pleaded with me to come up to his apartment (where he obviously lived alone) but not before we spent 15 minutes trying to saw that rusty old bike loose, with his World War II-vintage hacksaw with missing teeth.

You may know that Dutch people are the tallest in the world, reflecting a very high standard of living. But — if this old man is not unusual — alleviating the loneliness of old people isn’t part of the Dutch social contract, admirable as it may be.

I recently watched the Frontline program Sick Around the World. It suggested that that old man isn’t unusual. In England, where doctor visits are free, a doctor said he has several patients who come weekly, purely because they’re lonely. In Japan, some patients have their blood pressure measured very often — presumably for the same reason. In Taiwan, if you see a doctor 20 times in one month someone from the government will come to talk to you. Not about loneliness — about overuse of medical care. The Frontline program made nothing of any of these facts, which were included to show that access was easy. That’s not all they show. What if the British doctor had said that several patients visit him often because they need water? Then we’d be shocked. Yet the idea that everyone needs human contact isn’t mysterious or controversial.

My explanation is there’s a double whammy: Not only do lonely old people have little power, it’s also clear that their problem (loneliness) isn’t caused by a “chemical imbalance”. So no drugs can be sold to treat it. And there’s no diagnostic category. It’s another example of gatekeeper syndrome. When these lonely old people exert what little power they have by visiting their doctor, the doctor — I’m assuming — doesn’t do anything to get rid of the loneliness. Even if you visit 20 times in a month.

Value of Blood Glucose Self-Monitoring

In the 1960s, Richard Bernstein, an engineer and a Type 1 diabetic, pioneered the use of blood glucose self-monitoring. Using it, he was able to greatly improve his glucose control and thereby his health. No one doubts it helps Type 1 diabetics. With Type 2 diabetics, whose blood glucose is better controlled, the benefit is obviously less clear — but to many Type 2 diabetics, unmistakable.

A recent literature review, however, begged to differ:

Contrary to the widely-held belief, there is no proof that non-insulin-dependent patients with type 2 diabetes benefit from glucose self-monitoring. Moreover, it remains unclear whether an additional benefit is displayed by the blood test compared to the urine test or vice versa, in other words, whether one or other of the tests might offer an advantage to patients. The current data are quantitatively and qualitatively inadequate: the few trials that are suitable for investigating these questions have not included or have insufficiently reported many outcomes important to patients. Owing to their short duration, it is also not possible to draw any conclusions on the long-term benefit of glucose self-monitoring. This is the conclusion of the final report of the Institute for Quality and Efficiency in Health Care (IQWiG), [which is in Germany,] published on 14 December 2009.

Which is even more ridiculous than dermatologists concluding that acne isn’t due to diet. At a forum for diabetics, the report was roundly criticized:

Telling a Type 2 Diabetic not to measure his/her BG is like telling an overweight person not to weigh themselves…Ignorance is NOT bliss.

Totally agree! I was told by a nurse the other week not to measure my blood pressure at home as ‘home testing can cause patients to get worried”!!!

I have recently been diagnosed with type 2, and without the regular testing i did whilst i was going though my diet change, I would have no idea which foods caused high or low readings. I definitely think regular testing gives you the ability to control your diabetes 100% more than with no testing and using the 3 month HBA1c tests.

[impressive self-experimentation:] For my own edification, I discovered that chromium, zinc, and vitamin B1 added to my diet were benficial. I discovered that cinnamon, selenium, Omega 3, and some other quack remedies being touted on the web did nothing for me except empty my pocket. I was about to start investigating CQ10 enzymes, but the doctor [who said “don’t self-test”] stopped that trial in its tracks.

The most noticeable thing about this thread is how many people have either just joined or made a relatively “early” post after belonging for ages. Amazing! There is a depth of feeling aroused [by this report] that wasn’t apparent before!

Why have dermatologists claimed we can’t say acne is caused by diet (“there is insufficient evidence”)? Why did these diabetes researchers claim we can’t say home testing helps Type 2 diabetics? A big reason, I believe, is that these claims (if true, which they aren’t) would preserve their gatekeeper function. You don’t need to see a dermatologist to stop eating chocolate. Home testing will reveal all sorts of simple ways that you can control your blood sugar without medicine. The doctors who reach these ridiculous conclusions have a big conflict of interest that goes unstated. They are fine with the conclusion that home testing helps Type 1 diabetics because Type 1s will still need them. Because Type 1 diabetics inject insulin, they need doctors to prescribe it.

Even More Room For Improvement at the NY Times

In a widely-emailed article about depression, Judith Warner, a former columnist at the New York Times, writes:

This is the big picture of mental health care in America: not perfectly healthy people popping pills for no reason, but people with real illnesses lacking access to care; facing barriers like ignorance, stigma and high prices; or finding care that is ineffective.

When Atul Gawande fails to mention prevention in a discussion of how to improve American health care . . . well, he’s a surgeon. Of course he has gatekeeper syndrome. What’s Judith Warner’s excuse? Judging from this article, the notion that depression might be prevented has not occurred to her.

The Limits of Expert Trial and Error

Of course I loved this comment on a recent post of mine about how to flavor stuff:

I made a vegetable soup today spiced by small amounts of vegetable stock, hoi sin sauce, angostura bitters, lea & perrins worcestershire sauce, Kikkomann soy sauce, maggi wrze, marmite, maille mustard. I can honestly say it was the best tasting soup I, or any of my guests, can remember having been served.

I routinely make soups that taste clearly better than any of the thousands of soups I had before I figured out the secret. There is no failure (I’ve done it 20-odd times), no worry about over- or under-cooking. Something else odd: There seems to be a ceiling effect. The texture could be better, the appearance could be much better, the creaminess could be better, sometimes the temperature could be better, the sourness could be better, but I can’t imagine it could be more delicious.
Why wasn’t this figured out earlier? I’ve looked at hundreds of cookbooks and thousands of recipes. I haven’t seen one that combines three or more sources of great complexity, as I do and the commenter did. There may be more trial and error surrounding cooking than anything else in human life. Billions of meals, day after day.

I think it goes back to my old comment (derived from Jane Jacobs) that farmers didn’t invent tractors. Some people claimed they did but I think we can all agree farmers didn’t invent the engine on which tractors are based. You can’t get to tractors from trial and error around pre-tractor farming methods. Even though farmers are expert at farming. I think that’s what happened here. I am not a food professional or even a skilled cook. My expertise is in psychology (especially psychology and food). Wondering why we like umami, sour, and complex flavors led me to a theory (the umami hypothesis) that led me to a new idea about how to cook.

And this goes back to what many people, including Atul Gawande, fail to understand about how to improve our healthcare system. The supposed experts, with their vast credentials, can’t fix it — just as farmers couldn’t invent tractors. Impossible. The experts (doctors, medical school professors, drug companies, alternative healers) have a serious case of gatekeeper syndrome. The really big improvements will come from outsiders. Outsiders who benefit from change. To fix our healthcare system, empower them.

The Most Promising Solutions to the Allergy Epidemic

At a charity dinner in New York City to benefit the Food Allergy Institute, the president of the Institute told the guests that

Several promising treatments [were] in the works, including a Chinese herbal therapy being developed by the prominent allergist Dr. Hugh Sampson of Mt. Sinai (ready as soon as 2011) and a parasite “similar to those found in the stomachs of most citizens in developing countries,” which could someday be introduced into imperiled Upper East Side intestines, the theory being that “in the developed world, we live in too clean of an environment, so our immune system has nothing familiar to attack.”

Gatekeeper syndrome. How dare they not read this blog!

How the National Multiple Sclerosis Society Harms MS Patients

I blogged earlier about how Paulo Zamboni, an Italian surgeon, discovered that almost all MS patients have impaired blood flow from the brain. Surgery to improve the blood flow usually reduced MS symptoms. A very important discovery.

At the National Multiple Sclerosis Society, in Denver, they are unconvinced. They want more studies. Yes, Zamboni’s single study shouldn’t be the final word but here is the astonishing part: They say patients shouldn’t get tested to see if they have impaired blood flow. Impaired blood flow is very rare. When an MS patient gets tested, this tests Zamboni’s theory. His theory predicts they are likely to have impaired blood flow. At the National MS Society, they are against gathering data that would help decide if Zamboni is right. And against individuals finding out if something is wrong with their blood flow. This isn’t conservative, it’s stupid. And harmful — if anyone listens to them.

I wrote them to ask about their astonishing recommendation. Here’s the answer (from Kris Graham):

Our greatest concern at this point is the risk involved with the possible treatment, and we would like to see more clinical testing done before making a recommendation to the general public.

I wrote again to say it was the recommendation against testing (not treatment) that I was asking about. I got this reply:

We are not recommending that people get tested because there is not yet a treatment that has undergone comprehensive clinical testing.  In other words, we do not encourage people to go through testing that can not – yet – lead to treatment.  If clinical trials show that treatments, such as Dr. Zamboni’s, are clinically safe and effective, we will of course change our recommendations.  Until we know from controlled trials that there is a treatment to offer, spending the money to get tested doesn’t seem very reasonable.

What nonsense. Dr. Zamboni did a clinical trial. Spending money to get tested is money spent in a way that helps every MS patient — not to mention yourself. It’s gatekeeper syndrome — they can’t fathom why a MS patient would want to gather useful health-care info without waiting for “controlled trials,” whatever those are. I wrote back to ask what “controlled trials” meant. No reply. Thank god for self-experimentation, PatientsLikeMe, and CureTogether.

Gatekeeper Syndrome

If the original Milgram obedience experiment weren’t scary enough, in the 1960s a researcher named Hofling did a variant in which nurses were ordered to give twice the maximum dose of a certain drug. The drug was not on the hospital’s approved list, the order was given by phone, and the nurse didn’t know the doctor giving the order. Yet 21 out of 22 nurses obeyed. (They were stopped just before giving the drug.) Hofling concluded that of the several intelligences that might have been involved in the situation, one was absent.

I thought of this research when I learned about a remarkable case of anaesthesia dolorosa. Anaesthesia dolorosa is a condition where you lose sensation in part of your face and have great pain in that area. It’s rare; it’s usually caused by surgery. In 1999, Beth Taylor-Schott’s husband had an operation for trigeminal neuralgia that left him with this condition. In the ensuing years, all sorts of pain medications failed to solve the problem. Then he had another operation:

In January of 2008, David underwent a gamma knife procedure to ablate the sphenopalentine nerve bundle. Before the procedure, we were told that 16 other patients had had the procedure, and that all of them had experienced either complete recovery without drugs or an 80% reduction in pain. So we were optimistic going in. It was only after they had done the surgery that the doctors admitted that they had never done it on someone with AD before and that all those other patients had had atypical facial pain. The surgery had no effect as far as we could tell.

Shades of my surgeon claiming the existence of studies that didn’t exist. But that’s not the point. The point is this: After reading Atul Gawande’s article about mirror therapy for phantom limb pain, she and her husband tried it. “Within 2-3 days, his pain was down to zero.” It stayed there so long as they continued the mirror therapy. Soon after this they were able to eliminate his pain medication.

I asked Taylor-Schott what the reaction of her husband’s doctor was. She replied:

David’s actual pain doctor wrote back a single word, if I remember correctly, which was “fantastic.”

Wow. An incurable debilitating pain condition quickly and completely eliminated without drugs or danger or significant cost and . . . a pain doctor isn’t interested. Let’s call it gatekeeper syndrome: lack of interest in anything, no matter how important to your work, that doesn’t involve you being a gatekeeper.

I said that showed remarkably little curiosity. Taylor-Schott said that was typical. I agree. After I lost 30 pounds on the Shangri-La Diet, my doctor expressed no curiosity how I had done so. A friend of mine showed his doctor some data he had collected highly relevant to how to treat his condition; his doctor wasn’t interested.

Curiosity is part of intelligence. Not measured on IQ tests — a serious problem with those tests. To lack curiosity is to be just as brain-dead, in a different part of the brain, as those too-obedient nurses. Taylor-Schott speculated that curiosity was beaten out of doctors in medical school. Or perhaps much earlier. Curiosity doesn’t help you get good grades in college.

In my experience, college professors have their own problems along these lines. UC Berkeley has a fantastic selection of talks, year after year. I almost never saw a professor at a talk in a department different from his own — no psychology professor (other than me) would attend a talk in nutrition, for example. At statistics talks, I almost never saw a professor from another department. Curiosity had been beaten out of them too, perhaps. Professors who lack curiosity produce students who lack curiosity . . . it makes sense. It sort of explains why Berkeley professors had/have a such a narrow view of intelligence; to them being smart means being good at what college professors do. It also explains why the lack of measurement of curiosity on IQ tests is so rarely pointed out.

And it explains why Taylor-Schott and her husband learned about mirror therapy from a magazine article rather than from one of the many pain doctors they consulted.