Category: gatekeeper syndrome

How the National Multiple Sclerosis Society Harms MS Patients

Seth Roberts15 Comments

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

Seth Roberts9 Comments

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.