Category: health care

Examples of MS Liberation Therapy

Seth Roberts10 Comments

This story from the Globe and Mail describes what happened to ten Canadians who left the country to get liberation therapy for their multiple sclerosis (MS). The therapy consists of widening veins that drain blood from the brain. The therapy does not always work, but it usually does. The improvement is so fast and large — comparable to giving someone with scurvy Vitamin C — that the thing being changed must be the source of the problem.

Mainstream MS researchers missed this completely. The mainstream view is that MS is an auto-immune disease (e.g., according to Mayo Clinic staff). This view would never lead you to the liberation surgery. Doctors not only have the wrong idea, they are unwilling to defend it. A woman in the Globe and Mail story tried to get the anti-liberation argument from neurologists. She couldn’t:

Unfortunately the neurologists are all hysterical. You can’t talk to them.

Remember this the next time someone tells you that ulcers are not caused by stress but are actually caused by bacteria — as several contributors to this EDGE symposium claim.

The vast improvement in understanding of MS came about because someone with the necessary expertise (a professor of surgery) cared more than most MS researchers because his wife had MS. I think this is why my self-experimentation found such different solutions than mainstream science: because (a) I cared more than the professional researchers who studied the subject (e.g., sleep) and (b) I had the necessary expertise to do research. I discuss this here.

Thanks to Anne Weiss.

Epilepsy’s Big, Fat Miracle …

Seth Roberts3 Comments

… is the title of a New York Times Magazine article about the ketogenic diet, a treatment for childhood epilepsy, which I’ve blogged about several times (here, here, here, here, here). It’s a very-high-fat diet. It interests me for two reasons: (a) It connects a high-fat diet with proper brain function, as my self-experiments have done. A curious feature of the ketogenic diet is that it isn’t permanent. After several years the child can go off it. My self-experimentation suggests that Americans eat far too little of certain fats. Perhaps eating enough of these fats would prevent childhood epilepsy. (b) It shows how someone who cares enough — in this case, Jim Abrahams, whose son had epilepsy — can be more effective than professional researchers and doctors. Abrahams rediscovered the diet. He saw its value, the professionals didn’t. I’ve argued that this is part of why my self-experimentation found new solutions to common problems: because I had those problems. I cared more about finding a workable solution than researchers in those areas, who had several other concerns (publication, funding, acceptance, etc.).

The details of the article reminded me of something I learned in the BBC series The Story of Science. For hundreds of years, medical students were told, following Aristotle, that the liver has three lobes. It doesn’t. You might think that examination of thousands of actual livers would have dispelled the wrong idea, but it didn’t. The article contains many examples of doctors ignoring perfectly good evidence in favor of nonsense they read in a book or heard in a lecture. Epilepsy is easy to measure. If a child has 100 seizures per day, and has been having them at this rate for years, and this goes down to 5 shortly after he starts the ketogenic diet, and goes up again when the child goes off the diet, there is no doubt the diet works. As early as the 1930s, this had been observed hundreds of times. This was overwhelming evidence of effectiveness. Doctors ignored it, probably based on the modern equivalent of the three-lobed liver. They complained, according to the article, that there was “no evidence it worked” or that the evidence wasn’t “controlled” or “scientific” (whatever that means). A study published in 2008 “answered doubts about keto’s clinical effectiveness” — as if doctors needed the equivalent of a very-large-type book to be able to read what most of us can read with normal-sized type.

According to the article, “by 2000, more people were asking about keto, but most pediatric neurologists still would not prescribe it” — as if the parents needed the approval of their doctor to try it. You don’t need a prescription to buy food.

Thanks to Tim Beneke, Michael Bowerman, Alex Chernavsky, David Cramer, and Peter Couvares.

How Wonderful is Lipitor? (continued)

Seth Roberts5 Comments

In response to my previous post about Lipitor, someone named Brian commented:

I recently stopped taking Zocor [a statin, like Lipitor, and the most prescribed anti-cholesterol drug]. I started taking it at the same time I started using a CPAP machine to treat sleep apnea. While my sleep was more restful, I remained fatigued. After a year of Zocor, I was diagnosed with ADHD. Following this diagnosis, I tried a string of medications — adderall, stratera, and ritalin. I even became depressed and was put on an SSRI. My memory and mental prowess faded and became extremely spotty at best. I would use IQ apps on my iPhone to measure my mental prowess — and usually scored in the 75-100 range! (Prior to Zocor, similar computerized IQ tests would yield answers from the 130s to the 170s.) . . .

So I quit taking Zocor. (Initially, I tried using COQ10 to moderate the effects, but it proved ineffective.) . . . My mind is back, as are my computerized IQ scores. I no longer arbitrarily stop talking in the middle of sentences after losing my train of thought.

Apparently Zocor caused serious mental problems. Is this rare or common? Common. Here is an article about it. The idea that statins have bad mental effects is old. At first it was dismissed. Here is one dismissal:

The issue of low serum cholesterol and depression was directly examined in three randomized, placebo controlled trials of statins in which indices of depression were measured in all the participants—a total of 7400 people taking active treatment and 2400 taking placebo. Depression was no more common among those taking active treatment.

Apparently these three large randomized placebo-controlled trials got the wrong answer. Curious.

Perhaps statins cause mental impairment in everyone. Everyone’s brain uses cholesterol. If you are going to start or stop taking a statin (such as Zocor or Lipitor) and would like to learn how the drug affects/affected your mental function, please contact me. I am interested in helping you do that.

In the top 15 most prescribed drugs, Lipitor (#7) was the only non-generic. The profits are large, the benefits small and plausibly outweighed by the costs. There is great room for improvement in determination of how much Lipitor and other statins impair mental function.

How Wonderful is Lipitor?

Seth Roberts6 Comments

John Cassidy, a staff writer at The New Yorker, understands clearly the poor judgment of economics professors. In How Markets Fail he said the Nobel Prize in Economics has made things worse, because it has often been given for worthless work. Outside of economics, however, he can write this:

during a period in which American companies have created iPhones, Home Depot, and Lipitor, the best place to work has been in an industry [the financial industry] that doesn’t design, build, or sell a single tangible thing.

That such a smart well-informed non-party-liner can believe Lipitor is wonderful shows Orwell was right: with enough repetition, people can be convinced war = peace. Here is the truth about Lipitor:

Statin therapy is extremely efficient in lowering cholesterol numbers, but unfortunately not without adverse effects on the body. To prevent a first heart attack, for every life that is saved – 1% over 10 years of use – statins cause an equal number of adverse deaths due to accidents, infection, suicide and cancer — 1% over 10 years’ use and significantly greater levels of serious side effects and suffering. . . . In a study to see the effects of raising the Lipitor levels from 10 to 80 mg (more sales) on patients, those taking 80 mg had increased liver problems, that is the rate of raised liver enzymes was six times higher than those given 10 mg of Lipitor. Even though the total deaths due to CVD in the 80 mg group was fewer (126) than in the 10 mg group (155), the total deaths due to other causes was higher in the 80 mg (158) than the 10 mg (127) group. There was no difference in the overall mortality rate.

Lipitor, the miracle drug. Taken by millions at a cost of billions. This is what happens when you — such as those in charge of health care — have little understanding of a problem: You aren’t good at solving it.

Cardiologists believe that high cholesterol causes heart attacks. Their depth of understanding was illustrated by the cardiologist at my Quantified Self talk about butter who said that the Framingham study showed that diet caused heart attacks (no, it found new correlations between heart disease and “risk factors” such as cholesterol — see also this) and that the recent reduction in heart attacks is evidence of our improved understanding (e.g., the science behind Lipitor). That a thousand other things changed over the same time period he apparently hadn’t considered. He simply couldn’t defend — at least then — his core belief that butter was bad. A cardiologist! How many thousands of people has he told to eat less butter?

Cassidy’s article about the harm done by the financial industry, from which that quote was taken, is excellent.

My Experience of Sickness

Seth Roberts12 Comments

I am at a hotel. Yesterday I decided to take a walk. A short distance from the hotel I started to walk uphill. It was surprisingly hard. I realized I was sick.

I think this is what happens when your immune system is working properly: Sickness stops being obvious. I think my immune system is working well because I sleep well and eat plenty of fermented foods.

I have never heard sickness described like this by anyone else. I have heard it described in terms of obvious suffering thousands of times. Which suggests a lot of room for improvement.

Health Care As Seen by a Psychiatrist

Seth Roberts10 Comments

A reader of this blog named Laura Fisher left a comment about “doctors as bureaucrats” — meaning they care more what their employer thinks of them than what their patients do. A scary and plausible idea. I asked for details. She replied:

I live [and practice psychiatry] in a small [Utah] college town that is 80% Mormon. Almost all the docs in town are employed by an outfit called Intermountain Healthcare which owns most of the hospital beds in this and a few surrounding states. Once you get the doctors on the payroll, they really must take instruction from the employer–and they sure as hell do. The doctors who refuse to take instruction that is ethically or morally conflicted or repugnant are typically subjected to “peer review” as a means of punishment, either by hospital medical staffs or by state licensing boards. If you want  details on the abuses of “peer review”, you should find plenty of information on the website of the Association of American Physicians and Surgeons.

The typical patient I see has been jollied along for years [by IHC doctors], sometimes decades, without any of his physicians taking the time to review his/her medications effectively. There isn’t a billing code for actually taking the time required to deliver good care, so the patients do not get good care. Some of them get good surgeries. Some get bad surgeries. Often a patient has had a surgery or procedure that he or she did not need. Often the surgery creates new needs for expensive pharmaceuticals. Most often he or she is on a pharmaceutical which is causing psychiatric effects. Either no one has thought of this, including psychiatrists, or no one other than the patient has thought of this and the patient is afraid to discontinue medications for fear of alienating the doctors he needs to stay on good terms with and for fear of unanticipated withdrawal syndromes. The docs who are seeing these salt of the earth working-class patients are young physicians who are not familiar with the old-fashioned notion of the doctor-patient alliance as being somewhat sacred, private and full to the brim of ethical obligations on the part of the physician. These docs check out at quitting time. I have seen them fail to save a sick person at risk of death when one of their colleagues is responsible for putting the patient in that predicament. They refuse to answer questions from patients about whether or not a given treatment change would help that patient, apparently because that doctors employers’ treatment guidelines don’t include answering such questions or choosing different treatment and because that doctor’s professional society leaders are reading from the same page where treatment is conveniently canned such that even nurses can dole it out pretty successfully.

I have seen depressed patients whose depression completely resolved when he or she stopped taking the statin they were on. I have also been interested in the statin users apparently having a higher risk for infections and therefore cancers. Duayne Graveline wrote a very short book (Lipitor, Thief of Memory) on his personal experience with transient global amnesia. This short book is great introduction into the statin subject. The best book I have found on the statins is Fat and Cholesterol are Good For You by Uffe Ravnskov. There is an International Network of Cholesterol Skeptics and their website is marvelous. If you look at this material you are going to learn that it is a poor idea to interfere with cholesterol because we have to have it for brain function.

Don’t forget to read The Trouble With Medical Journals by Richard Smith and The Emperor’s New Drugs by Irving Kirsch.

Statins and memory loss. Thanks to JR Minkel.

The Contribution of John Ioannidis

Seth Roberts6 Comments

From an excellent Atlantic article about John Ioannidis, who has published several papers saying that medical research is far less reliable than you might think:

A different oak tree at the site provides visitors with a chance to try their own hands at extracting a prophecy. “I [bring] all the researchers who visit me here, and almost every single one of them asks the tree the same question,” Ioannidis tells me . . . “’Will my research grant be approved?'”

A good point. I’d say his main contribution, based on this article, is pointing out the low rate of repeatability of major medical findings. Until someone actually calculated that rate, it was hard to know what it was, unless you had inside experience. The rate turned out to be lower than a naive person might think. It was not lower than an insider might think, which explains lack of disagreement:

David Gorski . . . noted in his prominent medical blog that when he presented Ioannidis’s paper on [lack of repeatability of] highly cited research at a professional meeting, “not a single one of my surgical colleagues was the least bit surprised or disturbed by its findings.”

I also like the way Ioannidis has emphasized the funding pressure that researchers face, as in that story about the oak tree. Obviously it translates into pressure to get positive results, which translates into overstatement.

I also think his critique of medical research has room for improvement:

1. Black/white thinking. He talks in terms of right and wrong. (“We could solve much of the wrongness problem, Ioannidis says, if the world simply stopped expecting scientists to be right. That’s because being wrong in science is fine.”) This is misleading. There is signal in all that medical research he criticizes; it’s just not as strong a signal as the researchers claimed. In other words the research he says is “wrong” has value. He’s doing the same thing as all those meta-analyses that ignore all research that isn’t of “high quality”.

2. Nihilism (which is a type of black/white thinking). For example,

How should we choose among these dueling, high-profile nutritional findings? Ioannidis suggests a simple approach: ignore them all.

I’ve paid a lot of attention to health-related research and benefited greatly. Many of the treatments I’ve studied through self-experimentation were based on health-related research. An example is omega-3. There is plenty of research suggesting its value and this encouraged me to try it. Likewise, there is plenty of evidence supporting the value of fermented foods. That evidence and many other studies (e.g., of hormesis) paint a large consistent picture.

3. Bias isn’t the only problem, but, in this article, he talks as if it is. Bias is a relatively minor problem: you can allow for it. Other problems you can’t allow for. One is the Veblenian tendency to show off. Thus big labs are better than small ones, regardless of which would make more progress. Big studies better than small, expensive equipment better than cheap, etc. And, above all, useless is better than useful. The other is a fundamental misunderstanding about what causes disease and how to fix it. A large fraction of health research money goes to researchers who think that studying this or that biochemical pathway or genetic mechanism will make a difference — for a disease that has an environmental cause. They are simply looking in the wrong place. I think the reason is at least partly Veblenian: To study genes is more “scientific” (= high-tech = expensive) than studying environments.

Thanks to Gary Wolf.