Category: health care

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.

Foot Fungus Cured With Socks

Seth Roberts14 Comments

A friend writes:

I remember reading on your blog about more socks as a cure for Athlete’s Foot and I had a fungal infection on my foot from climbing around barefoot outside, I think. I tried using two different antifungal creams. They didn’t work. To be honest I didn’t use them for the recommended time cuz it’s a huge fucking hassle. You have to put it on your feet, let it dry, rub it in blah blah blah. And it’s kinda gross to use. So I went to Uniqlo [a Japanese clothing store] and bought like 20 pairs of extra socks and forgot about it. But when I wash socks the washed ones get put in the back of the drawer so the effect is the socks I wear spend like 3-4 days away from my feet every time. Anyway, the infection COMPLETELY disappeared. There is a weird sense of satisfaction from this kind of cure. It feels like just by doing some small things ‘right’ all these health issues can be fixed.

I had foot fungus for years, I too tried antifungal creams without success, and the problem cleared up within days when I bought a lot more socks. It has remained cleared-up. You could call it the staging-area problem: Our things act as staging areas for harmful bugs. Another example is getting an eye infection from pillowcases.

Senator Grassley Asks Med Schools Their Policies On Ghostwriting

Seth Roberts4 Comments

Medical ghostwriting is plagiarism with a bullet: not only do med-school profs get the benefits of a published article they didn’t write, that published article — written by a drug-company hack — is inevitably misleading, causing doctors to prescribe a drug that is worse than they think. (Which is the whole point.) Patients who take the drug are the big losers.

This sort of thing is so patently awful — especially the harm done to millions of sick innocent people — that you’d think everyone finds it repulsive. Quite the opposite. Living breathing med school professors, such as New York University professor Lila Nachtigall, have trouble seeing what’s so bad about it. The practice appears so common that Senator Grassley asked the ten top medical schools, such as Harvard, Johns Hopkins, and UCSF, to say their policies about it. He’s asking them: Do you consider plagiarism wrong? Except it’s much worse than plagiarism. Although several say on their websites that it’s wrong, Duke University says that “Severe and/or repeated offenses will result in formal disciplinary action”– in other words, non-severe examples are okay! At least the first time. “Formal disciplinary action” can be as mild as a letter. At Duke, at least, they have trouble grasping how awful it is.

This might seem to have nothing in common with self-experimentation. Self-experimentation can be done by anyone, costs nothing, and is a way to figure out helpful truths; whereas almost no one can get a drug company to write a paper for them (you need to be at a top medical school), drugs are a hundred-billion-dollar/year business, and this sort of ghost-writing is done to hide helpful truths. In a better world, they really would be worlds apart. But you are reading this not because I did self-experimentation but because I did self-experimentation that found out something useful and surprising — the Shangri-La Diet and new ideas about sleep and mood. A big reason it did so was that the experts in those fields — such as the relevant med school professors — were utterly and completely asleep, so to speak. They were incapable of making significant progress. Extreme careerism — putting one’s career ahead of everything else — is no doubt one reason. They could have done what I did. Fat weight-control profs could have tested different diets on themselves, for example. But doing good research would be harmful to their career (e.g., not enough publications), so they don’t do it. Medical ghostwriting helps their career, so they take advantage of it. So what if millions of sick people are harmed by these decisions.

My surprisingly-productive self-experimentation and the staggeringly careerist decisions of med school profs are two sides of one coin: the profound stagnation in health care. The complete inability of those in charge to innovate effectively. Drug companies are businesses that make drugs. They are not going to explore non-drug low-cost solutions, such as those I explored. Nothing, however, prevents med school profs from doing so — at least, nothing except their extreme careerism. My self-experimentation shows what could have been done. It shows that the health questions we face (e.g., how to lose weight) have solutions much better than a new drug. The widespread practice of medical ghostwriting is one indication why those solutions haven’t been found. Failure to find new solutions means problems have stacked up unsolved, getting worse and worse (the obesity epidemic, the allergy epidemic, etc.). It’s usually called a healthcare crisis — but it’s really a health crisis.

Breakthrough in Treating MS

Seth Roberts10 Comments

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.

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.

FDA Hid Research Showing that Aspartame is Dangerous

Seth Roberts10 Comments

Here is a lot of information about this. The commercial name for aspartame is Nutrasweet. Because of worries about its neurotoxicity I switched to Splenda long ago. But if the FDA approval process is so deeply flawed they approved Nutrasweet, how safe is Splenda? In China, I’ve managed to pretty much avoid artificial sweeteners.

How to Base Medicine on Evidence

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The thing to notice about what the New York Times calls “ the evidence-based medicine practiced at Intermountain hospital” is how different it is than the movement called evidence-based medicine. The Intermountain stuff, above all, is not black-and-white thinking. It is a good example of what the opposite looks like. The rules aren’t simple, they are complex, and not fixed. It is what engineers in other areas have been doing since Deming.

So many scientists — not to mention everyone else — are completely paralyzed, rendered completely useless, by their black-and-white thinking. It feels good to them — they love the certainty of it, and the power it gives them to look down on others — and they never quite realize what it has done to them. The notion of using evidence to improve health care made perfect sense — until black-and-white thinkers got a hold of it.

Any class in scientific method should be at least half about avoiding black-and-white thinking. They never are.

UCLA: Livers For Sale

Seth Roberts14 Comments

According to 60 Minutes,the UCLA Medical Center moved a notorious Japanese mobster to the head of the liver transplant line after he donated $1 million to the program. Thus imitating Mother Teresa, who became friends with the worst dictators in the world if they gave her enough money.

More UCLA receives a large amount of taxpayer money, both state and federal. None of those taxpayers appreciates losing a life-saving liver to a gangster who paid none of those taxes. It’s an extreme abuse of public trust.

“Some of Them Will Have the Wrong Answer”

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In Exploratory Data Analysis, John Tukey tells about visiting a high-school chemistry class. Each student in the class had done an experiment to determine a physical constant. Tukey suggested to the teacher that they gather and plot the results. The teacher didn’t like this idea. Some of the students will have gotten the wrong answer, said the teacher. Tukey didn’t know what to say.

In a previous post, I said there is great stagnation in health care. Obesity and mental illness are the examples most obvious to me, but there are many other problems on which our health care system has made little progress for a long time. (Sure, we should have universal health care but the idea that this will do much about the obesity epidemic, the autoimmune disease epidemic, the autism epidemic, and so on, is absurd. Doctors don’t know how to get people to lose weight. A reasonable health care system would focus on prevention. That is something the current batch of doctors doesn’t know how to do.) I added that a reasonable health policy would empower those who benefit from change.

That’s a difficult thing for people in power to do. Not only does it mean giving up power, it also means giving it to “the wrong people”. The people you like to demonize. People who are . . . not respectable. Not clubbable, John Cheever might say. And, quite apart from that, some of them will have the wrong answer. Tukey’s high-school chemistry class was at a fancy private school, where we might expect such elitist attitudes. But I heard the same thing from colleagues at UC Berkeley when I would suggest giving students much more power to determine what they learned in a psychology class. Some of them will want to learn the wrong things, said my colleagues. I think Tukey was trying to say that the chemistry teacher didn’t understand variability but I think the psychological point of his story is even more interesting.

Evidence-Based Medicine

Seth Roberts5 Comments

In the comments, Bruce Charlton writes:

The failure to fund trials is combined with a suffocating dominance of the perspective of self-styled ’evidence-based medicine’ (EBM) – including the groundless notion that only mega-trails should be taken seriously. . . Since the vast majority of randomized trials are industry funded, EBM has meant that industry has a de facto monopoly on ’reputable’ therapeutic knowledge.

Delivering us into the hands of Big Pharma was not – of course – intended by the socialistic founders of EBM, but it has happened nonetheless.

This reminds me of something one of my students said. We were discussing male/female differences — in particular, the observation that women are more religious than men. One student said that in her experience, guys were either not religious at all or very religious.

I agree with her. I think this is why EBM has the form it does. Its male founders — not understanding the tendency that my student pointed out — went from one extreme (medical orthodoxy, unrelated to evidence) to another (evidence-based medicine). Reliance on evidence is a good idea, yes, but the founders of EBM couldn’t help making it resemble a religion. You might think that relying on evidence is the opposite of religion but they made the whole thing as religious as possible. EBM became just another way — just another excuse, really — to sneer at people.