A GAPS Testimonial

Gut And Psychology Syndrome (GAPS) is a book by Natasha Campbell-McBride about how to treat allergies, autism, and similar conditions.  In this entry, Cheeseslave talks about her own son and then quotes another mother about the effects of the GAPS diet (plus other changes) on her autistic son.

Kevin lacked oxygen at birth, so in the first year of life, I already saw that he was not developing like my other kids (he is our 5th). His motor skills lagged and he cried a lot, didn’t sleep so well, etc.At two, his behavior was just not right. He never responded right to correction, would throw things in anger or frustration, cried all the time, especially when waking up, basically never happy. He didn’t walk until two and then he would fall down constantly.

He also began to always be starving. When he was really hungry, his face would get distorted and frozen in a strange way. I now think he was having seizures of sorts.

We did not vaccinate at all and we figured out that if we fed him lots of protein type foods like meats, he would relax his body and face and be able to go play for a bit until it happened all over again in a short time.

I do think that because we didn’t vaccinate and figured out to keep feeding him this way, we were able to “coast along” like this for years. He had learning disabilities, lacked social skills and continued to have autistic traits like sensory issues, hiding under blankets, reacting to sounds, not liking people around, rigid in routines, and spinning and going on his head along with head banging.

Long story shorter, we did get a diagnosis of Aspergers at one point. We took him to doctor after doctor, specialist after specialist to no avail. He also strangely was NEVER once sick (we later learned that his immune system was not working a bit).

At 9 years old, he got pneumonia, followed by asthma and allergies. His eating [problems] had escalated to the point of feeding him every 20-30 minutes or he would have gigantic meltdowns. We eventually could not even have people over.

He was given an inhaler for the asthma and suddenly, without us making the connection, he began to not respond when called, became extremely hyperactive and began to run away at all hours of the day and night requiring police to find him and being very dangerous. (we once lost him in the middle of downtown Chicago). He would also try to jump out of moving vehicles, out of windows and required constant restraining.

The seizures got bad, he would fall down the stairs and lose consciousness several times per day. They tried psych drugs and he almost died twice from his reaction to them (I am now grateful that we couldn’t go that route).

We became so desperate that we brought him home from hospital and got deadbolts to keep him from running, did all our own restraining and called alternative docs to help us.

We began kefir and diet from nutritionist (basically a BED [Body Ecology Diet]/GAPS version), took him off inhaler. His allergies were totally out of control, he could barely open his eyes from swelling, and his chin was deformed and swollen, his belly too, his whole body. He would only eat junk food and fast foods and it was incredibly difficult to transition him to the diet.

The DAN (Defeat Autism Now) protocols we followed, made him worse in lots of ways b/c the chelation made him extremely violent, the B12 shots kept him awake for nights on end without any sleep, the antifungals and all those other interventions were nightmarish for him.

Eventually, I resolved to use only foods and do this without any kind of doctors. So for this past year, I researched and researched and was determined to bring him back from this state. We have done a combo of GAPS (and BED) very successfully along with lots of fermented foods and drinks.

The allergies and asthma are 100% gone, the seizures we have had only one in 65 days and very mild (compared to 5-10 per day). He sings every morning and has cried once in the last 2.5 months (he used to cry for 1-3 hours at a time each day) and he can go outside again without running away. He is in martial arts, acting appropriately at church, having eye contact, no autistic traits of late and learning academics after two years of not being able to open a book. He reads before bed at an 8th grade level.

This story has many interesting elements. 1. Huge improvement. Very plausible that it’s due to the dietary change. 2. Autism and allergies go away at the same time, suggesting same cause. 3. Treatment with fermented foods. 4. A different “radical” solution failed, meaning there is no reason to think this is a placebo effect. 5. The mystery of why an inhaler made things worse. 6. Autism not due to vaccination.

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) http://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 http://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.

Interview with Tyler Cowen

Tyler Cowen’s new book Create Your Own Economy: The Path to Prosperity in a Disordered World has a lot to say about two topics in which I am especially interested: autism and human diversity. What can the rest of us learn from people with autism? What does the wide range of outcomes among autistic adults tell us about our world? I interviewed Tyler by email about his book.

ROBERTS If I remember correctly, you think a book should be new, true, and something else. What’s the something else?

COWEN The “something else” should cover at least two qualities.

First, if everyone read the book and was persuaded by it, would anything change for the better? An author should aim to write a book which matters.

Second, the book should reflect something the author really cares about. If the author doesn’t care, why should the reader?

ROBERTS What was the tipping point for this book — the event that made you say: I’m going to write a book about THIS?

COWEN To me it’s very important what an author is thinking about in his or her spare time, if the phrase “spare time” even applies to my life, which has an extreme blending of work and leisure time. Ideally that is what an author should be writing about. At some point you realize: “Hey, I am constantly thinking about xxxxx in my spare time!” And then you want to write it up.

I also hit up the idea of this book through pondering the lives of some particular individuals I know — and how much they *live* the thesis of my book — although I am not sure they would wish to be identified publicly.

ROBERTS Have you been to Autreat, the annual conference of Autism Network International, that you mention? If so, did it affect your thinking?

COWEN I haven’t been to Autreat, which for me is located somewhat inconveniently away from major cities (that is on purpose, I believe). I’m also not clear on exactly who is welcome, who needs an invitation, etc. Most conferences have a very high variance in quality across presentations and mostly one goes to meet one or two key people; often you don’t know in advance who they will be. I suspect the same logic applies to Autreat as well.

ROBERTS Do you think there are jobs that persons with autism do better than persons without autism?

COWEN Autistics often exhibit superior skills in attention to detail, pattern recognition, what I call “mental ordering,” and they have areas of strong preferred interests, in which they are very often superb self-educators. So yes, that will make many autistics very good at some jobs but also poorly suited for others. But I don’t want to generalize and say “autistics are better at job X,” that would be misleading. Across autistics there is a wide variety of cognitive skills and also problems. Engineering and computer science are the stereotypical areas where you expect to find higher than average rates of autism. While I suspect this is true in terms of the average, it can be misleading to focus on the stereotype precisely because of the high variance of skills and outcomes among autistics. One of the central issues in understanding autism is grasping the connection between the underlying unity of the phenomenon and the extreme variability of the results. In the short run, positive stereotypes can perform a useful educating function. But the more we present stereotypes, the more we are getting people away from coming to terms with that more fundamental issue, namely an understanding of the variance.

ROBERTS There is a basic biological phenomenon in which animals and plants under stress become more variable. Some say variability in the genotype has been released into the phenotype. Do you think the variance seen in autism has been “released” in some way?

COWEN I am not sure I understand the question…for one thing I am not sure what is the postulated increase in genetic stress…

ROBERTS Yes, it’s a confusing question. Let’s try this: What do you think the high variance of outcome seen in autism is telling us?

COWEN I’ll try to make that more concrete. One view of autism is that autistics have greater access to lower-level perception and such that access is essential for understanding autism. On one hand it gives autistics some special abilities, such as pattern recognition, certain kinds of information processing, and noticing small changes with great skill. (In some cases this also leads to savant-like abilities.) This also may be connected to some of the problems which autistics experience, such as hyper-sensitivities to some kinds of public environments.

It could be that non-autistics have a faculty, or faculties, which “cut off” or automatically organize a lot of this lower level perception. The implication would be that for autistics this faculty is somehow weaker, missing, or “broken.” The underlying unity in autism would be that this faculty is somehow different, relative to non-autistics. The resulting variance is that the difference in this faculty gives rise to abilities and disabilities which very much differ across autistics.

That’s one attempt to come to terms with both the unity of autism and the variance within it. It’s a tough question and we don’t know the right answer yet, in my view. What I outlined is just one hypothesis.

ROBERTS A clear parallel in the increased variance of autistic persons is the increased variance of left-handers. Left-handers have brain organizations that vary much more than the brain organization of right-handers. Right-handers are all one way; left-handers are all over the place. Do you see any similarities between left-handers and persons with autism?

COWEN I recall some claims that autistics are more likely to be left-handed but I’ve never looked into their veracity. There are so many false claims about autism that one must be very careful.

ADHD is another example of something which produces high variance outcomes. I don’t think it is correct to call it a disorder *per se*.

We’re just starting to wrap our heads around the “high variance” idea. Most people have the natural instinct to attach gross labels of good or bad even when a subtler approach is called for.

ROBERTS The term left-hander is confusing because left-handers aren’t the opposite of right-handers. The dichotomy is okay but the two sides are better labeled right-handers and non-right-handers. In other words, one group (right-handers) has something (a certain brain organization); the other group doesn’t have that brain organization. Then the vast difference in variance makes sense. How accurate would it be to say that non-autistics have something than autistics don’t have? (I’m left-handed, by the way.)

COWEN I would say we still don’t have a fully coherent definition of autism. And “have” is a tricky word. I think of autistic brains as different, rather than “normal” brains with “missing parts.” Some researchers postulate differences in the kind of connections autistic brains make. In thirty years I expect we will know much, much more than we do right now.

ROBERTS I hope this isn’t too self-indulgent: What do you make of the correlation between autism and digestive problems?

COWEN I don’t think there are convincing theories about either digestive problems causing autism or autism causing digestive problems. There is *maybe* a correlation through a common genetic cause, but even if that is true it is not very useful as a means of understanding autism. This is another area where there are many strong opinions, often stronger than are justified by the facts.

ROBERTS Another “assorted” question: I loved the study you mentioned where people with perfect pitch were more likely to be eccentric than those without perfect pitch. That’s quite a result. How did you learn about it?

COWEN There is a somewhat scattered literature on music, cognition, and society. It still awaits synthesis, it seems. Someone could write a very good popular book on the topic. (Maybe Gabriel Rossman is the guy to do it.) The more I browsed that literature, the more interesting results I found.

ROBERTS I don’t think I’ve done justice to your extremely original book but here is a last question. You talk about Thomas Schelling’s use of stories. Presumably in contrast to other econ professors. I think of story-telling being something that once upon a time everyone did — it was the usual way to teach. Why do you think Schelling told stories much more than those around him?

COWEN Thanks for the kind words. Schelling has a unique mind, as anyone who has known him will attest. I don’t know any other economist or social scientist who thinks like he does, but we’ve yet to figure out what exactly his unique element consists of. I would say that Schelling views story-telling as a path to social science wisdom. They’re not even anecdotes, they’re stories. Maybe that doesn’t sound convincing to an outsider, but it got him a Nobel Prize.

I am very interested in the topic of “styles of thought in economics.”

Autism and Digestive Problems

The latest issue of Pediatrics has a study that asks whether autism is associated with digestive problems. The authors compared the medical records of about 100 autistics with about 200 matched controls. The controls came from an area in Minnesota, near the Mayo Clinic, in which almost everyone has a health record on file that the researchers could look at. So the controls are a good sample of the non-autistic population.

The New York Times described the results like this:

The scientists found no differences [should be difference, singular] in the overall frequency of gastrointestinal problems reported by the two groups.

This isn’t quite right. The study found that the proportions of persons in each group to have had at least one digestive problem by age 20 weren’t reliably different. For the autistic kids, the proportion was 77%; for the controls, 72%.

The study design seems fine but the data analysis has a lot of room for improvement. You have an idea you want to test, good; try to test it with one test. The authors boiled down all their data into “at least one problem by age 20” — that’s just what epidemiologists are told to do — but this was a poor choice. First, there is a ceiling problem. If both groups had percentages in the 90’s, this would be obvious. Better to avoid the ceiling problem. Second. to combine different symptoms with the “at least one” rule is likely to be less sensitive to differences than a combination rule that takes amount into account. The analysis in the article treats someone with 1 problem as equal to someone with 50 problems. No justification is given. Third, it isn’t obvious that it makes sense to combine symptoms this way. What if Symptom 1 and Symptom 2 are uncorrelated? In other words, what if whether you have Symptom 1 doesn’t affect your chances of having Symptom 2? Then to combine them (as the authors do) makes no sense. Factor analysis is how you condense several correlated measures into a few uncorrelated measures.

The study separated digestive problems into five categories (constipation, diarrhea, and three others). In each of the five categories, persons in the autistic group were more likely to report the problem than persons in the control group; in four of the five categories, the difference was significant (with one-tailed p values; the authors misleadingly use two-tailed p values — without making that clear).  In one of the five categories the difference isn’t anywhere close to significant — which supports the idea that that there are at least two dimensions here: one on which the two groups differ, and one on which they don’t.

In the discussion, the authors, not realizing that four out of five of their problem categories differed significantly in the predicted direction, try to explain away the two differences that were significant with two-tailed p values: in constipation and picky eating. They note that autistic children get more medication that normal children. “Many children with autism are treated with resperidone, and this may result in increased appetite and weight gain,” they write. Why a drug that causes weight gain would cause picky eating isn’t explained and, without explanation, doesn’t make sense. Weight gain — they mean too much weight gain — involves eating too much; picky eating involves eating too little. Nor do the authors explain why their results differed from many previous studies. My take on the paper is that their results confirm previous studies, so that would have been interesting to read.

The Mother of an Autistic Child Writes…

Lisa Belkin, who blogs about parenting for the NY Times, prints an excellent letter from the mother of an autistic child about what it is like:

“Crying.” The study talks of the crying. [The mom wrote to Belkin to complain that a study Belkin described sugar-coated things.] The word pales in the face of our son’s dissolutions into tears. These days, if he hears a simple “no” or learns of some change in plans, he might launch into a 10-minute jag, where he argues fiercely with us in between the sobs. Then he can quickly escalate to ear-piercing screams lasting another 15 minutes or more. It’s a wonder none of our neighbors have misconstrued what they might have heard and called 911. The shrieking does subside, back into sobs, and that part is somehow harder to watch, reminding me how terrifying it must be to feel to be that out of control, especially when you’re a small, anxious child.

No good deed goes uncriticized. An autistic adult named Sarah writes to Belkin to complain:

Please, consider that autistic people read blogs and have feelings as well. Your blog entry claims to show “the unvarnished reality of autism,” but the feelings and perceptions of actual autistic people are sadly missing from your account.

What an idea: that no blogger should write something that might hurt the feelings of someone with autism. As for the “sadly missing,” the passage I quoted from the mom describes the “feelings and perceptions” of an autistic person at length. Sarah blogs here.

Refrigerator Parents

Two epidemiological case-control surveys have linked the age at which, growing up, your home got a refrigerator with your chances of getting Crohn’s Disease later in life. The controls (without Crohn’s) got refrigerators later than the cases (with Crohn’s). This is not one of those data-mining correlations. It was (a) predicted and (b) found in two independent studies.

Crohn’s Disease is much more common in rich countries than poor ones so it was reasonable to examine aspects of lifestyle that distinguish rich and poor countries. In rich countries, the likelihood of having Crohn’s seems to be increasing over time, which is more reason to look for environmental explanations. One of the studies was done in Tehran, where a significant fraction of the population didn’t have a refrigerator when they were born. The control group was patients with irritable bowel syndrome, a curious choice. (The differences might have been larger had they chosen a non-inflammatory digestive problem.) The other study was done in England and used a control group of patients with a non-inflammatory disease.

Refrigerators, of course, retard the growth of bacteria, which I believe everyone needs to eat plenty of (the umami hypothesis). Long ago, “refrigerator mothers” — mothers who treated their children with insufficient warmth — were blamed for autism and schizophrenia in their children. Now that it is clear that autism is connected with digestive problems there may be ironic truth in the old claim.

Thanks to Dennis Mangan.

Refrigerator poetry.

The Wisdom of the One-Year-Old Picky Eater

From a parent’s account of her autistic son in Recovering Autistic Children (2006) edited by Stephen Edelson and Bernard Rimland, p. 79:

James took matters into his own hands at about the time of his first birthday, and started refusing milk except in the form of yogurt or cheese.

The parents, alas, did not draw any conclusions from this.

The wisdom of the five-year-old picky eater.

“Baffling” Link Between Autism and Vinyl Floors

From Scientific American:

Children who live in homes with vinyl floors, which can emit chemicals called phthalates, are more likely to have autism, according to research by Swedish and U.S. scientists published Monday.

The study of Swedish children is among the first to find an apparent connection between an environmental chemical and autism.

The scientists were surprised by their finding, calling it “far from conclusive.” Because their research was not designed to focus on autism, they recommend further study of larger numbers of children to see whether the link can be confirmed. . . .

The researchers found four environmental factors associated with autism: vinyl flooring, the mother’s smoking, family economic problems and condensation on windows, which indicates poor ventilation.

Here, in a nutshell, are several of the weaknesses with the way epidemiology is currently practiced. I doubt there is anything to this, but who knows? It deserves further investigation. Here’s what could have been better:

1. The researchers did dozens of statistical tests but did not correct for the number of tests. This means there will be a high rate of false positives. The researchers appear to not quite understand this. They don’t need “further study of larger numbers” of subjects — they simply need studies of different populations. The sample size isn’t the problem; the statistical test corrects for that. It is the researchers’ failure to correct for number of tests that makes this evidence so weak.

2. They did their dozens of tests on highly correlated variables. This is like buying two of something you only need one of. A big waste. That they measured something as specific as vinyl flooring implies they gave a long questionnaire to their subjects. Perhaps there were 100 questions. Answers to those questions are likely to be highly correlated. Expensive homes tend to be different in several ways from cheaper homes. The presence/absence of vinyl flooring is likely to be correlated with family economic conditions and condensation on windows (more expensive = better ventilation). The researchers could have used factor analysis or principal components analysis to boil down their long questionnaire into a small number of factors — like 4. So instead of doing 100 tests, they could have done 4 much stronger tests. Then, if there was an unexpected correlation, there would be a good reason to take it seriously.

Someone quoted later in the article gets it completely wrong:

Dr. Philip Landrigan, a pediatrician who is director of the Children’s Environmental Health Center at Mount Sinai School of Medicine, called the results “intriguing, but in my mind preliminary because they are based on very small numbers.”

Nope. Statistical tests correct for sample size. This is like an astronomer saying the sun revolves around the earth. In this article this happens twice.

Autism and Digestive Problems

A new study in Pediatrics has a brief but useful summary of the evidence linking autism and digestive problems. Here’s one study. Here’s a review, with this abstract:

Recent publications describing upper gastrointestinal abnormalities and ileocolitis have focused attention on gastrointestinal function and morphology in [autistic] children. High prevalence of histologic abnormalities in the esophagus, stomach, small intestine and colon, and dysfunction of liver conjugation capacity and intestinal permeability were reported. Three surveys conducted in the United States described high prevalence of gastrointestinal symptoms in children with autistic disorder.

There is also evidence that immune dysfunction is associated with autism.

I believe that few people in America eat enough bacteria — in practice, this means not enough fermented food — and that this causes digestive and immune problems. A vast number of people will say, “of course, good food is really important, bad food causes X, Y, and Z” — where X, Y, and Z can be practically anything. The difference between my views and theirs is the prescription: They inevitably think that people should eat more fresh unprocessed food. (Usually fruits and vegetables, for some curious reason.) Fermented food, of course, is not fresh and not unprocessed.

Vaccine Safety: Is This the Best They Can Do?

In the debate over vaccine safety, I’m not on either side. I am quite unsure whether vaccines with mercury caused autism, for example. I would be happy to read a decent book on the subject, no matter what the author believed.

Instead we have a book by Dr. Paul Offit, who wrote, criticizing another book about vaccines, that it “never discusses the fact that mercury is present on the earth’s surface.”

Sentences like that make me think vaccines are less safe than claimed by Dr. Offit.

Vaccine Safety: A Debate

As I said on Christmas Eve,  thanks to Web comments and blogs, you can now hear many voices in a debate in a way you never could before. The New York Times has just added a vote-like recommendation feature to help sift through a large number of comments. (I hope they add a “sort by” feature to make the most popular comments easy to find.) People you could not usually hear from turn out to have enormously interesting and helpful things to say — again and again and again.

A new example is the debate over vaccine safety. A 2007 book called The Vaccine Book: Making the Right Decision For Your Child by Robert Sears took a middle ground: A way that parents can space out vaccines. This seems to have offended Dr. Paul Offit, a vaccine inventor. With Charlotte Moser he wrote a critique (may be gated) of the book, just published in Pediatrics, that is actually an attack on it. Would the critique be full of well-reasoned arguments? New facts? Nope. It reminds me of my surgeon claiming that a certain surgery was beneficial and, when questioned, saying that of course evidence supported her claim but never producing any evidence. However, overstatement from doctors is nothing new. What’s new is the comments section on the critique (may be gated), which contains several fascinating observations.

From John Trainer, a family doctor:

[For Offit and Moser] to castigate [Sears] for offering information to the laity is to fall prey to the same mindset as the early church. By controlling access to the Bible, the leaders of the church exerted control over all.

From Corrinne Zoli, a Syracuse University researcher:

The vaccine debate plays out against a backdrop not only of facts vs. falsehoods, refereed vs. non- mainstream journals and studies, science vs. speculation, a complicated enough arena, but of conflicting cultural ‘facts,’ which may be equally important as the science. For instance, parental concerns over the safe cumulative levels of thimerosal (ethyl mercury) in vaccines were unwittingly validated by the American Academy of Pediatrics (AAP) and the U.S. Public Health Service and others’ recommending their removal (which largely occurred in 2001)—even while these organizations were steadfast in public declarations of no causal link between the preservative and various neurotoxic or neuropathological ill-effects. What did parents learn from this decision? Aside from the fact that the preservative had been long removed in many countries of the world (i.e., the UK and even Russia), or that infants may have received doses exceeding EPA recommendations, they learned that organizations designed to serve the public trust were contradictory in their words and deeds. . . . The larger ‘lesson learned’ by parents was to fear the decision making processes of medical and public health institutions and to become critically engaged with them using whatever tools at one’s disposal (i.e., online information, reading scientific studies, discussion groups, etc.).

Fifty years ago, when doctors wouldn’t justify their claims, you couldn’t do much about it. Few had access to medical libraries or the time to visit them. Now there is an enormous amount you can do. Water will simply flow around the rocks, such as Dr. Offit, who get in the way of better decisions.

This sort of open discussion is so helpful it should be standard scientific practice: allow your research to be commented on by anyone for anyone to read.

Assorted Links (mental health edition)

  • many psychology-related blogs
  • a blog about how “we simply are not getting the kind of results that patients, myself included, were promised 20 years ago at the dawn of the psychopharmacological revolution”
  • confirmation of a correlation between autism and rainfall
  • the selling of Dr. Joseph Biederman, a Harvard child psychiatrist
  • trouble at “The Infinite Mind” (a radio show). “Dr. Fred Goodwin [the show’s host] accepted at least $1.3 million in pharmaceutical company speakers’ fees while he was hosting . . . Goodwin defended his actions by claiming this is what all doctors do, plus he took funding from all kinds of pharma companies so that canceled out his conflicts.” As if non-pharma therapies didn’t matter.

Benfotiamine and Self-Experimentation: Surprising Results

Tim Lundeen, whose fish oil/arithmetic results impressed me, recently tried taking benfotiamine (a fat-soluble version of thiamine) to reduce damage caused by high blood sugar. Things did not go as he expected:

I bought 100mg capsules from Life Extension Foundation, and starting taking 1 per day in the morning with breakfast. Over the course of 3-4 weeks, the two small dead spots on the bottoms of my big toes started to feel normal, and I didn’t notice them anymore when I went walking. My energy and general mood were good, and my fasting blood sugar readings were basically unchanged, staying in the 85-95 range. Scores on my daily math speed test were good, possibly slightly better than before.

Unfortunately, I started to gain weight, gaining about 10 pounds over the 10 weeks I took benfotiamine, without any other major changes to my regimen.

Weight gain was not a known side effect. For example, a 2005 study in which 20 patients received the drug for three weeks reported: “No side effects attributable to benfotiamine were observed.” This is on a web page that is trying to sell benfotiamine but there’s nothing unusual about the situation. Studies of drug efficacy are almost always done by drug companies that want to sell the tested drug. What is the term for such a side-effects reporting system? The fox guarding the hen house, perhaps?

It isn’t easy to measure side effects in conventional studies of treatment vs placebo. If you measure the rates of 100 possible side effects, and use a 5% level of significance, one or two true positives will go unnoticed against a background of five or so false positives. So a drug company can paradoxically assure that they will find nothing by casting a very wide net. And there is a larger and more subtle problem that statistics such as the mean do not work well for detecting a large change among a small fraction of the sample. If soft drinks cause 2% of children to become hyperactive and leave the other 98% unchanged, looking at mean hyperactivity scores is a poor way to detect this. A good way to detect such changes is to make many measurements per child. Many did-a-drug-harm-my-chlld? cases come down to parents versus experts. The experts are armed with a a study showing no damage. But this study will inevitably have the weaknesses I’ve just mentioned — especially, use of means and few measurements per subject. The parents, on the other hand, will have used, informally, the more sensitive measurement method.

For these reasons, I suspect drug side effects are woefully underreported. Here is the story of a child with a neurodegenerative disease that might have been caused by “the Gardasil vaccine (or perhaps some other vaccine with key similarities, such as an aluminum adjuvant).” Her parents are trying to find other children with similar symptoms.

FDA Acknowledges Risk of Teeth Fillings With Mercury

The Food and Drug Administration has settled a lawsuit related to mercury in dental fillings. As part of the settlement, it will acknowledge that these fillings may harm some people. This is from an email by someone behind the lawsuit:

To change FDA policy, we tried petitions, Congressional hearings, state fact sheet laws, Scientific Advisory Committee hearings, and letters galore — to no avail. So in the great American tradition, we sued. The case came to a head this spring. On April 22, working with Johann Wehrle and Gwen Smith, I filed a motion for an injunction before Judge Ellen Huvelle. Three sets of briefs later, the government and I presented our oral arguments on May 16. In a crucial ruling, Judge Huvelle ruled that our 11 plaintiffs — the diverse group
listed below — have standing. She said FDA should classify, and invited the two sides to mediate. On May 30, before Magistrate Judge John Facciola, Bob Reeves (who flew in from Lexington KY) and I hammered out an agreement with FDA officials and lawyers.

The impact of the re-writing of its position on amalgam can hardly be understated. [A curious mistake: the writer means overstated.] FDAs website will no longer be cited by the American Dental Association in public hearings. FDA shows awareness of the key issues involved. As it prepares to classify amalgam, FDA has moved to a position of neutrality. Indeed, having repeatedly raised the question of amalgams risk to children, young women, and the immuno-sensitive persons in its website, I find it inconceivable that FDA will not in some way protect them in its upcoming rule.

Mercury fillings were once very common and are still common. Unfortunate that it took a lawsuit to get the FDA to change. Judges have little or no relevant experience understanding scientific papers. Scientific advisory panels have much more relevant experience. However, they suffer from a “purity” bias — they are evidence snobs.

Andrew Solomon on Autism

After reading an excellent article about Craig Newmark by Philip Weiss in New York magazine, I turned to a New York article about controversy over how to deal with autism. (New York, you see, is more humble and thus more interesting than The New Yorker.) Its author, Andrew Solomon, who wrote The Noonday Demon, once wrote about the deaf rights movement. The neurodiversity movement is similar. What I found most revealing about Solomon’s article is the level of animosity he uncovered.

Researching this article, I spent a lot of time being talked at by people on both sides, one more doctrinaire than the next. Not since my early days reporting from the Soviet Union had I found myself so bullied about what I should and shouldn’t be mentioning.

It’s a kind of debate that didn’t happen until recently: on one side are parents who want to help their kids; on the other side are people who want more acceptance for autistic behavior. On the face of it they should be allies but in reality they are enemies. It reminds me of my complaint about how graduate students are trained (or rather not trained): they never learn to praise, to see what’s good about this or that study, so their natural inclination to be negative does a lot of damage.

Does Mercury Cause Autism? (continued)

A 2006 paper reported that autism rates have started to decline, according to a California reporting system and a nationwide one. The declines, you will see if you look, are very clear. They started soon after mercury began to be removed from childhood vaccines. Richard Herrnstein, the psychologist, coined a useful phrase: to praise with faint damn. I thought of it when I read comments (here and here) criticizing this study because of the journal it is in.

According to the Sacramento Bee,

Experts said, however, that they don’t know what’s causing the numbers to fall off.

“Perhaps whatever caused (the number of cases) to go up … is no longer present,” said Dr. Robert Hendren, executive director of the University of California, Davis MIND Institute, which researches neurodevelopmental disorders.

No kidding.

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