Confirmation of Stunning MS Claim

I blogged earlier about an Italian med school professor named Paulo Zamboni who, studying his wife, came up with an entirely new theory about multiple sclerosis (MS): It’s caused by restricted blood outflow from the brain. Almost all MS patients had this condition, Zamboni found. The great value of this theory is that blood outflow can often be improved with surgery. In at least some cases, this surgery has reduced MS symptoms.

Now, a study done in Buffalo has found results that support Zamboni’s idea. MS patients were twice as likely as healthy people to have restricted blood flow. This is a weaker correlation than Zamboni found but I make nothing of it — there are lots of ways to mess things up, so that you get noisier results. (And there are lots of ways to push results in a preferred direction.)

Zamboni wasn’t an MS expert. He made this breakthrough because his wife had MS and he had technical skills (including surgical skills — his specialty is surgery).

Thanks to Anne Weiss.

More A more detailed description.

A Call From Dr. Eileen Consorti’s Office

Yesterday I was contacted by Dr. Eileen Consorti’s office. (Dr. Consorti is a surgeon to whom I was referred a few years ago, after my primary-care doctor noticed I had a tiny hernia — so small I hadn’t noticed it.)

“Can I ask a favor of you?” her assistant began. The favor was to remove her name from my blog. Why? I asked. Because when someone googles her, he said, what you have written comes up, and it isn’t favorable. (When I googled her name yesterday this was the first result. When I googled the same thing today, it was the seventh result.) He said nothing about any inaccuracy. I said if she has anything to add, I would be happy to amend what I wrote. He asked if I had any “further” questions for Dr. Consorti. No, I said. The conversation ended.

Then I realized I did have a question. During my discussion with her of whether or not I should have surgery, I had said that surgery is dangerous. Dr. Consorti had replied that no one had died during any of her surgeries. She had said nothing about the likelihood of other bad outcomes. That struck me as incomplete. My question was: Why no mention of other bad outcomes? I phoned Dr. Consorti’s office, reached the person I’d spoken to earlier, and told him my question. He tried to answer it. I said I wanted to know Dr. Consorti’s answer. Wait a moment, he said. He came back to the phone. He had spoken to “the doctor”, he said. She wasn’t interested in “further dialog”. She would contact a lawyer, he told me.

Dr. Consorti, if you are reading this, I am happy to publish verbatim anything you have to say about this.

Thanks to Tucker Max.

More On November 18, 2011, soon after I posted this, Dr. Consorti asked me to post the following:

Dr. Fitzgibbons from Creighton published a prospective study comparing repair of inguinal hernias versus watchful waiting in men with asymptomatic inguinal hernias. At five years twenty percent of the patients in the observation group crossed over to have surgical repair. By the way, I only get reimbursed $300.00 dollars to repair a hernia not thousands of dollars. I hope you asymptomatic always, thanks.

Even after all this, Dr. Consorti has described the Fitzgibbons study in a way that makes her recommendation seem more reasonable than it was. As I said, the results of that study do not support her recommendation. Its abstract says: “Watchful waiting is an acceptable option for men with minimally symptomatic inguinal hernias. Delaying surgical repair until symptoms increase is safe.”

The Checklist Manifesto by Atul Gawande

A few years ago, Gawande wrote two articles in The New Yorker about medical innovation: The Score (about Apgar scores) and The Checklist. Since then, he has done actual research promoting the use of checklists and this book (which I got free from the publisher) is mostly the story of his contribution, with sidebars about the origin of checklists in aviation and their use in building construction. The word checklist suggests that it is all about making sure certain things get done but Gawande takes pains to say that is only half of it. The other half is helping people who don’t know each other work together — by having them introduce themselves and by making sure everyone is heard.

Use of checklists, judging by the results, is a big advance and for that reason alone this would be a solid book — the story of one person’s part in an important innovation. I am sorry he didn’t tell parts of the story that reflect badly on others — such as the Office of Human Research Protections decision that Johns Hopkins research must be stopped immediately because introducing checklists and tracking their effectiveness was dangerous. (Doctors might be embarassed by the results!) I wouldn’t expect a Harvard Med School prof to get nauseous with rage, the way Richard Harris, an earlier New Yorker writer, appropriately did in A Sacred Trust (how the AMA tried to block Medicare), but every story needs a villain. And there are plenty of villains in American medicine.

The book’s website, including Steve Levitt’s review.

Self-Experimentation and Journalism

Journalism and science are both ways of finding out about the world, so maybe changes in journalism presage changes in science. In a lecture about the future of journalism, Alan Rusbridge, editor of the Guardian, concluded:

There is an irreversible trend in society today . . . It’s a trend about how people are expressing themselves, about how societies will choose to organize themselves, about a new democracy of ideas and information, about changing notions of authority, about the releasing of individual creativity, about an ability to hear previously unheard voices; about respecting, including and harnessing the views of others.

My self-experimentation had/has some of these elements. The fact that I reached useful conclusions about sleep, mood, and weight without being an expert in any of these fields changed my ideas about authorities (that is, experts). Self-experimentation is very much — perhaps above all — a “releasing of individual creativity” in the sense that I could try to understand sleep, mood, and weight. If I had an idea, I could test it. The problem was mine to solve. Self-experimentation releases scientific creativity just as any artistic tool releases artistic creativity. In the areas of sleep, mood, and weight, I was a “previously unheard voice”. This blog connects my ideas with “the views of others”.

If the parallels between science and journalism hold up, we should eventually see a big restructuring of science — especially health science — that resembles the changes in journalism now happening. Dennis Mangan, who works at a blood bank, has shown that Restless Leg Syndrome can be due to niacin deficiency. No one ever found two causes of scurvy so it is likely that all cases of RLS are due to not enough niacin. So long, expensive drugs for RLS! The poor health of Americans pays for a lot of not-very-useful health science. When that health improves, that pool of money will shrink. Just as when people became better informed (by the Web), the pool of money available to pay journalists began to shrink.

Animal Fat, Sleep, and the Ketogenic Diet

Kathy Tucker draws my attention to a recent article about the ketogenic diet, which is essentially a very-high-animal-fat diet, used to treat childhood epilepsy. I’ve blogged about the ketogenic diet (here, here, and here) but that was before I was on a similar diet. Kids on the diet didn’t develop high cholesterol (“very few children actually end up with cholesterol or lipid problems on the diet”). I slept better when I ate more animal fat, which suggests that animal fat makes the brain work better overall. The success of the ketogenic diet supports that idea. My results suggest that it is the animal fat, not the other fat, that makes the diet effective.

That many kids with epilepsy get better when put on the ketogenic diet can be seen as a canary-in-the-coal-mine phenomenon. Canaries are more sensitive to bad air than miners; children with ketogenic-responsive epilepsy are more sensitive to lack of animal fat than the rest of us. That lesson was lost on me when I first learned about the diet and its success. The broader lesson is that almost any disease has something to teach us about what the best environment is.

Does Prenatal Ultrasound Cause Autism?

Caroline Rodgers, a science writer, has noticed some very interesting correlations:

The new autism figures published in the CDC’s 12-18-09 Morbidity and Mortality Weekly Report (MMWR) https://bit.ly/57XRca reveal an apparent anomaly: While there was an overall average autism increase of 57 percent in children born between 2002 and 2006, Hispanics in Alabama showed a 67 percent decrease in autism.

The mothers of the first batch of children who were eight years old in 2002 would have been pregnant in 1993. Therefore, I looked at what changes might have occurred in Alabama’s public health policy in 1993 that would explain a 67 percent drop in the autism rate of Hispanic children born between 2002 and 2006.

According to the 2002 PRAMS Surveillance Report: Multistate Exhibits Medicaid Coverage for Prenatal Care https://bit.ly/8godkv .

During 1993-2002, the prevalence of Medicaid coverage for prenatal care . . . decreased in 3 states (Alabama, Florida and West Virginia).

This particular correlation is in addition to a broad correlation between wealth and autism (more wealth, more autism):

Also significant in last week’s MMWR report were the ethnic differences in autism prevalence found among non-Hispanic whites, blacks and Hispanics. The autism rate in the monitored areas throughout the United States of children of non-Hispanic white women was 102 per 10,000; among black children, 76 per 10,000; and among Hispanic children, 61 per 10,000 — roughly half of the non-Hispanic white rate. These results seem counter-intuitive, since the non-Hispanic white population could be expected to have more access to prenatal care than the black or Hispanic populations. Yet if autism risk is increased by exposure to prenatal ultrasound, these figures make perfect sense.

This isn’t cherry-picking. Rodgers believed that we should take seriously the idea of a prenatal-ultrasound/autism link based on entirely different data.

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.

Not Being Your Own Doctor Can Be Dangerous

A friend of mine had a kidney stone. He got rid of it via Chinese herbs and yoga. After the kidney stone passed, a prostate infection went away. Here’s what he saved himself from by solving the problem himself:

1) A CAT scan. This particular scan would have been the equivalent of 18 years worth of (background) radiation (according to the FDA web site), all in 45 min or an hour.  Also, I would have had to take an iodine contract material.  This latter is (a) at least mildly nephrotoxic in healthy people (and I was already having kidney problems) and (b) accumulates in the thyroid and, being radio-opaque, causes deposition of larger amounts of x-radiation energy into the thyroid.  This latter is being blamed in the medical literature for the explosion in thyroid cancer rates over the last few years.  (Apparently they have had this problem before, prior to the advent of CT’s, when iodine was used as contrast, and then multiple x-rays were taken.)  I also learned that in Europe, there are controls with regard to how much x-ray a person can be exposed to. This means that they do not do these extensive CT’s, but employ MRI’s instead. The latter are not just less dangerous, but also much better diagnostic tools; but they are more expensive. As a result the US health insurance companies refuse to pay for them.

(2) Taking Cipro, which is what I had been given after the first round of antibiotics failed to work (leaving me a second positive urine test).  Cipro was the antibiotic given to the postal workers as a prophylaxis, when the scare about anthrax in the mail was going on. Were it not for the fact that they were all given the same thing, all started having the same symptoms, and then all started talking to each other, we would probably have never had the massive class-action law suits that forced the FDA to put a “black box” warning on this drug.  How bad could an antibiotic be? Well, it seems that some people are having their tendons release from the bone, often the Achilles tendon, sometimes within 24 hours of starting the drug.  And that is only what the FDA is now admitting to. On the web, you find that the really serious problems are neurological. Lots of what were very high functioning people are reporting on the web very similar effects.