Archive | Extreme biomed RSS feed for this section

So, Mr. Kennedy does cancel some speaking engagements

13 Mar

I recently wrote about how Robert Kennedy Jr. is gutless (I’m an autism parent. No way I will vote for Robert Kennedy Jr.. He’s gutless).  Over the past few decades, Mr. Kennedy has spoken at many events where fake, even abusive, therapies are promoted to autism parents for use on their disabled children. As a keynote speaker, Mr. Kennedy could have either refused to attend or used his platform to distance himself from these charlatans. To my knowledge, he never has.

So I was a little surprised to read that Mr. Kennedy had pulled out of recent convention (Not Even RFK Jr. Wanted to Come to This Vegas Convention of Anti-Vaxxers and ‘Free Speech’ Brands). The Rolling Stone article states:

The result was more anemic than cohesive, however, in part because scheduled keynote speaker Robert F. Kennedy Jr. had pulled out following a February article from Mother Jones. The piece noted that another RePlatform speaker, Lonnie Passoff, president of financial services providers Green.Money and GabPay, the latter being the payment system of the far-right social media network Gab, had endorsed antisemitic comments on a prominent conspiracist’s streaming show. 

Good for you, Mr. Kennedy. Good for you. A speaker at the convention had endorsed antisemitic comments so you decided to not show up.

But this begs the question, why were you willing to speak when charlatans are preying on the families of disabled children? The example I gave in my previous piece was that of chemical castration. For those who didn’t read the piece, I’m not making this up or exaggerating.

Let me bring up another example. Bleach enemas. Charlatans sold (and still sell) chlorine dioxide (a bleach) as enemas and drinks to cure autism. Parents would give their kids bleach enemas, the kids would pass the lining of their intestines and people would say, “look, we got rid of the parasites that cause autism!” No, I’m not making this one up either. I wrote about it many times.

The main proponent of this “therapy” in the autism communities was/is a woman named Kerri Riviera. One of the times she spoke was at a parent convention called AutismOne in 2013. The keynote speaker that year was Robert Kennedy.

Mr. Kennedy could have refused to speak. He could have spoken at the time that he disapproves of these therapies. He could have spoken out since then, demonstrating regret for lending his name and credibility to charlatans such as these.

To my knowledge, he never has.

That would have taken courage. And the ability to discern junk science. These are traits I have not seen Mr. Kennedy show often.

__

By Matt Carey

Tags: , , ,

I’m an autism parent. No way I will vote for Robert Kennedy Jr.. He’s gutless.

26 Feb

As an example, I will discuss one particularly egregious “therapy” that was used on autistic children, the so-called “Lupron protocol”. Mr. Kennedy was in a perfect spot to stop or limit this therapy, but he never did. It would have taken courage, and, in my opinion, Mr. Kennedy is gutless.

Robert Kennedy (RFK Jr.) is running for president. He failed to gain the Democratic Party nomination and is now running as a third-party candidate. Since the beginning of his campaign, he’s faced criticism for being anti vaccine and anti-science. As someone who has watched Mr. Kennedy for nearly two decades I will agree: he is, indeed, anti-vaccine and anti-science. But that’s not why I am strongly against the idea of him being president. I oppose his bid for one reason:

He’s gutless.

Let me explain.

Long before Mr. Kennedy reached national prominence with his myriad of bad ideas during the COVID-19 pandemic, he was well known in the anti-vaccine autism-parent community. He was probably most famous for pushing the failed idea that mercury in vaccines caused an autism epidemic (an idea he still won’t abandon). And this is where many discussions focus on how his actions are anti-science and anti-vaccine. But to me, I hurt for the harms Mr. Kennedy’s advocacy has caused autistic people and the autism communities. One can say, “his anti-vaccine views have caused harm to public health”. One would be right. But, the anti-vaccine movement has long used autism and autistic people as the hammer with which they attack vaccines. And, to quote Sancho Panza in Man of La Mancha, “Whether the rock hits the pitcher or the pitcher hits the rock, it’s generally bad for the pitcher”. Being the weapon of choice for attacking vaccines has caused increased stigma and allowed charlatans to sell fake “cures” for autism which range from useless to abusive.

As an example, I will discuss one particularly egregious “therapy” that was used on autistic children, the so-called “Lupron protocol”. Mr. Kennedy was in a perfect spot to stop or limit this therapy, but he never did. It would have taken courage, and, in my opinion, Mr. Kennedy is gutless.

For decades there have been regular autism-parent conventions focused primarily on two things: promoting the idea that vaccines cause autism and promoting fake “cures” for autism as a vaccine injury. And Mr. Kennedy has been prominent at these conventions, serving as a keynote speaker.

Mr. Kennedy speaks primarily on the idea that vaccines cause autism (they don’t). He’s well respected as someone who has been involved for decades in this arena. His name gives some credence to the others at these conventions, including those who push abusive therapies.

I have never heard of Mr. Kennedy speaking out against the fake, even abusive, “therapies” pushed at these parent conventions. Why? In my opinion:

He’s gutless.

Allow me to focus on one of the most egregious fake therapies pushed as part of the vaccines-cause-autism movement. There are more. Many more. But let’s just discuss chemical castration.

If you are thinking, no way that happened, Matt. You must be exaggerating. I’m not.

Doctors were prescribing Lupron in order to reduce the testosterone in autistic children. That’s chemical castration in my lay opinion. Dr. David Gorski, an oncologist, wrote a series of articles about this “treatment” as “why not just castrate them“.

Surely they had a good reasoning for taking such drastic measures, you must be thinking. No, they didn’t. In fact, the “science” behind the therapy is horrifically bad. It would be funny if it wasn’t actually used on children.

How was the “Lupron protocol” justified? First, let’s start with the idea that autism is caused by mercury. It isn’t, but this is the idea that Mr. Kennedy pushed so hard 20 years ago. Mercury intoxication is commonly treated by chelation, which is a way to remove mercury from the body. For years medical practitioners pushed chelation on autism parents (again, often at these autism parent conventions that Mr. Kennedy is known to speak at). Only chelation didn’t work. It didn’t work because autism isn’t mercury intoxication. But to people like the Geiers, the problem was that chelation wasn’t working, the problem was they needed a better way to chelate. They came up with the idea that testosterone was binding to mercury and keeping chelators from working. So, they postulated, remove the testosterone and one can remove the mercury and the kid will stop being autistic. Which brings us to chemical castration: remove or reduce testosterone in the body. Which brings us back to Lupron.

Seriously, it happened. And a father-son team named Geier led the charge.

In order to prescribe the Lupron, the Geier’s needed a diagnosis. Insurance companies aren’t going to allow people to prescribe Lupron for mercury intoxication (even ignoring the fact that the Geiers didn’t have evidence for mercury intoxication). So the Geier chose precocious puberty as the diagnosis. Diagnose a kid with precocious puberty and you can prescribe Lupron.

The Geiers got into trouble for this. In 2013 they were facing disciplinary action as noted by blogger Todd W. at Harpocrates Speaks (among many others). They were facingmedical license suspension. In multiple states. So, you’d think people might be questioning the Geiers’ “protocol”. Perhaps checking the “science” that supported it? Well, not in Mr. Kennedy’s circles, apparently.

A few days after Todd W. wrote his article, two things happened. The Geier’s spoke at a parent convention called AutismOne. And Robert Kennedy was the keynote speaker for that convention.

Think about it. Mr. Kennedy could have told the parents at that convention that he stands apart from the Geiers. He could have just said perhaps people should be cautious, a relatively weak stance. Mr. Kennedy could have taken a stronger stance said that what the Geiers were doing was chemical castration and it was wrong, a much stronger stance.

To my knowledge Mr. Kennedy did not speak out then against the Geiers or any other practitioner of fake autism cures. I have no knowledge of him ever speaking out against charlatans.

It would have taken courage to speak out. It would have taken courage to admit to himself that he’d missed the obviously bogus science before, and that he, a self-professed science expert, was wrong. And it would have made a difference. I don’t consider it hyperbolic to say that I consider chemical castration of disabled (or any) children to be abusive. And Mr. Kennedy could have slowed or even stopped this practice long before Dr. Geier lost his license. He was respected and a frequent speaker at these conventions.

It takes courage to face allies (the Geiers were long known for pushing the mercury-autism link. Mr. Kennedy cites them multiple times in his books) and say they are doing wrong. Mr. Kennedy didn’t even have to admit that the mercury-causes-autism idea was false (which would have taken another step of courage and would have been the right thing to do). Just that chemically castrating disabled children is wrong.

Seriously, how hard is it to say, “Chemically castrating disabled children is wrong”, Mr. Kennedy?

Mr. Kennedy has spoken regularly at the “vaccines-cause-autism” parent conventions. And the Geiers were not the only ones pushing abusive therapies. It would have taken courage to say, “I will not speak and lend my name to a meeting where fake therapies are promoted.” But Mr. Kennedy lacks that courage.

This is largely due, I believe, to the fact that Mr. Kennedy lacks to courage to analyze his own lack of scientific expertise. My belief is that Mr. Kennedy, to this day, doesn’t understand just how bogus the “Lupron protocol” was. But it would take a courage for someone who has branded himself as a person who understands science (even though he lacks any credentials) to say, “You know what, I didn’t catch on to the idea that the science the Geiers were claiming was unsound.”

One might ask, was the Geier science obviously bogus? I would say yes and I would say that someone with the expertise Mr. Kennedy claims to have should have easily seen there was a problem very early on. Let me explain. The Geiers claimed that mercury and testosterone form “sheets”, large complexes, in the brains of autistic children. Sounds very scientific and all, until we found that the study the Geier’s were basing this idea upon involved boiling mercury and testoterone in benzine.

In my opinion, Mr. Kennedy should have known that a child’s brain is not similar to boiling benzine. Yes, this sounds snarky, but it really is that simple. The science behind the Geier’s “Lupron protocol” was really that bad.

But this discussion risks getting back into the realm of “He’s anti-science”. I bring this up not to point out Mr. Kennedy’s lack of science chops, but to point out that the science was so bad that it didn’t really take much analysis to see it.

That is if one has the courage to question. To question one’s allies. To question one’s own expertise. To question whether one’s own inaction led to the abuse of disabled children. And, again, in my opinion this was abuse. And Mr. Kennedy could have helped stop it sooner.

Again, I only picked one example. And this discussion has gone long, so you can understand why I chose only one example. But there are many examples of fake cures promoted at autism-parent conventions that Mr. Kennedy could have stopped. There’s also a lengthy discussion we could have about the stigma the anti-vaccine movement has brought to autistic people (one of Mr. Kennedy’s allies tried to label autism as “mad child disease“, to give you one example.) Mr. Kennedy could have spoken out agains the stigmatizing language. But the fear of autism and autistic people has long been a mainstay of the anti-vaccine movement.

We need a president with courage. While others discuss his anti-vaccine views, his near self-delusional belief in his scientific acument, let me just say this again: Mr. Kennedy lacks courage.

Robert F. Kennedy Jr. is gutless.

_____

By Matt Carey

More discussions
This blog on Mr. Kennedy.
Articles on this blog about the Geiers.
Articles on this blog about Lupron.
Mark Geier’s Wikipedia Page.


Tags:

MMS, Miracle Mineral Solution, CD, Chlorine Dioxide…call it what you will, it’s abusive and it’s fake medicine

3 Jan

I’ve written a few times about MMS. Rather than the long articles on specific topics, I feel it’s appropriate to make a simple, short statement:

MMS, aka Miracle Mineral Solution, aka CD, aka chlorine dioxide is bogus. It’s junk. Worse than that, it’s abusive. Yes, you will find segments of the autism-parent community who promote and use it. But that doesn’t make it actually useful, nor does it make it OK to use.

Here’s the thing–it’s a bleach solution. The idea that this can work to “detoxify” or “kill parasites” is just flat out wrong.

The Autism Research Institute (ARI), a group which has promoted unproven alternative treatments for autism throughout its history, has this to say:

Given these issues, we advise against using MMS at this time. We hope parents will remain critical of unsubstantiated claims that children have recovered or greatly improved in the absence of objective proof. We also strongly encourage any parents who choose to administer MMS to their children to report it to their physician so that side effects can be monitored.

If a group such as ARI, a group favorable to alt-med, comes out with such a strong statement, you know it’s time to question the “scientific” claims and testimonials.

As to why I call this abusive? Used as an enema (one method strongly promoted by MMS activists) it causes people to pass the lining of their intestines. You can find pictures of these “worms” on the web, where people claim they have killed a parasite. (This is just the worst use of MMS. Taken orally it is still abusive).

Again, from the ARI:

The mucous threads that children expel during MMS treatment, which have been touted as worms (though laboratory analysis does not support this claim), are the body’s method of protecting itself from induced oxidative stress in the lower digestive tract equivalent to the mid-day sun in its ability to produce severe sunburn.

Seriously, what else can one call pushing chemicals into disabled children’s digestive tracts until they start passing tissues? Yes, parents subjecting their children to this are not doing so with the intent to abuse, but they are being fooled into a harmful act.

Since I keep getting commenters on this blog defending this practice, I felt the need to make this short and clear statement. MMS is bogus. It’s harmful.

Just don’t do it.
—
By Matt Carey

Remember the fake supplement OSR #1? It’s still being developed

5 Apr

A few years ago a fake supplement was marketed to autism parents for use on their children. The “supplement” was called “OSR #1”, OSR for “oxidative stress releif” or something to that effect. The name was a bit of a dodge, just as packaging it as a supplement rather than a drug was a dodge. It was/is a chelator. The chemical used–a novel synthetic chemical–was developed for use in environmental heavy metal polution.

This is obvious but worth noting: one can not “supplement” one’s intake of a chemical that humans have never been exposed to before.

If you remember OSR #1, you probably remember that the drug was pulled from the market. But you may be surprised to hear that it may be about to resurface.

The FDA found out that this chelator, this drug, was being sold as a supplement (which avoids thorough tests for safety and efficacy). The FDA sent the Boyd Haley, whose company was selling the “supplement” a warning letter that made it very clear:

The claims listed above make clear that OSR#1 is intended to affect the structure or any function of the body of man or other animals. Accordingly, OSR#l is a drug under section 201(g)(1) of the Act, 21 U.S.C. § 321(g)(1). Disclaimers on your website, such as “OSR#l® is not a drug and no claim is made by CTI Science that OSR#1® can diagnose, treat or cure any illness or disease,” do not alter the fact that the above claims cause your product to be a drug.

Moreover, this product is a new drug, as defined by section 201(p) of the Act, 21 U.S.C. § 321(p), because it is not generally recognized as safe and effective for use under the conditions prescribed, recommended, or suggested in its labeling. Under sections 301(d) and 505(a) of the Act, 21 U.S.C. §§ 331(d) and 355(a), a new drug may not be introduced or delivered for introduction into interstate commerce unless an FDA-approved application is in effect for it. Your sale of OSR#1 without an approved application violates these provisions of the Act.

emphasis added.

Even as a supplement, OSR#1 appeared to be mislabled. Customers were not fully informed of potential side effects, per the FDA letter:

Your website states that” [s]ome reports of temporary diarrhea, constipation, minor headaches have been reported but these are rare and the actual causes are unknown,” as well as “OSR#1 is without detectable toxicity” and “OSR#1® … has not exhibited any detectable toxic effects even at exceptionally high exposure levels.” However, animal studies that you conducted found various side effects to be associated with OSR#1 use, including, but not limited to, soiling of the anogenital area, alopecia on the lower trunk, back and legs, a dark substance on lower trunk and anogenital area, abnormalities of the pancreas, and lymphoid hyperplasia. Based on these animal studies and side effects known to be associated with chelating products that have a similar mechanism of action to OSR#1, we believe the use of your product has the potential to cause side effects, and the before-mentioned website statements falsely assert that the product does not have the potential to cause side effects. Therefore, these statements render your product’s labeling false or misleading. As such, OSR#1 is misbranded under section 502(a) of the Act, 21 U.S.C. § 352(a).

Mr. Haley’s company reportedly sold about $1.5M of OSR#1 as a supplement from his company CTI Science. I saw reports that OSR#1 was selling for about $2/pill so that’s maybe 750,000 pills. That’s a lot for somethiing untested for safety or efficacy. CTI appears to be a shortened version of the original name of the company: Chelator Technologies, Inc.. Chelators are drugs, not supplements.

All this said, CTI Science doesn’t appear to exist any more. If you go to the old website, www.ctiscience.com, you get directed to a non operating website, http://ermesmedical.com/?reqp=1&reqr=.

But obviously I haven’t written all this to say that CTI Science doesn’t exist. It’s not ermesmedical (as their link would suggest), it’s EmeraMed. No idea why they have this confusion over ermesmedical/emeremed. That said, Emeramed describes themselves as:

EmeraMed Limited is a biotechnology firm developing the antidote – heavy metal chelator and antioxidant – Irminix® (Emeramide). The Company is working to obtain marketing authorization in the EU and the US for the treatment of mercury toxicity. Phase 1 and Phase 2a clinical studies have been performed.

They have offices in Ireland, Swedend and the US (Kentucky–home of Boyd Haley). But no mention on the website about who is involved with the company, which I find rather odd. They note that the drug is not yet approved, but that they may be able to supply it to people under an “early access program”. Yes, why wait for actual approval and confirmation of safety and efficacy. This would be for use as a chelator–no mention of work as an autism treatment. There never was a good reason to use this for autism. Boyd Haley was long a proponent that autism is a form of mercury poisoning. Put simply, Boyd Haley was wrong. Very clearly wrong.

Mr. Haley and others may not be named on their website, but on SEC documents, he is named as part of Ermes Medical. If I read this document correctly, they have raised over $3.5M for the company.

As noted in their literature, they have been involved with clinical trials. For mercury poisoning. In Ecuador. No small irony there: many of Mr. Haley’s supporters complain that “big pharma” performs their clinical trials (or experiments, as his supporters would characterize them) in developing countries.

They are still pursuing patents for the treatment neurological disorders. No trial that I have found. Likewise for evidence of efficacy in humans. But a patent application.

A similar patent for treatment of COPD.

Should OSR#1 (under whatever new name) be approved for chelation, we can expect that it will return to the fake autism treatment world. Many still subscribe to the failed idea that autism is caused by mercury poisoning. That idea, pushed by Mr. Haley and others, was based largely on the idea that as mercury exposure from infant vaccines increased, so did the rate of identified autism. Biologically the idea was clearly wrong (autism and mercury poisoning are not similar). Also, even though mercury was removed from infant vaccines, autism rates have not fallen.

All that clear logic said, there still are people who chelate as an “autism treatment” and a new product will almost certainly cause a spike in the numbers trying chelation.

So, yeah, OSR#1 is gone. Except it may return soon under a new name. And likely a higher price tag. And it still won’t be a real treatment for autism.

—
Matt Carey

Study claims gluten free diet leads to higher levels of heavy metals like mercury

6 Mar

One of the purported treatments for autism is the Gluten-Free/Casein-Free (GFCF) diet. Studies have failed to find a benefit, but the idea persists. Especially among those who believe that autism is a vaccine injury (it isn’t) and that mercury in vaccines contributed to the rise in autism rates (it didn’t).

So there is a huge irony in the possibility, as a recent study suggests, that people on a gluten-free diet have higher levels of mercury and other heavy metals

The study is The Unintended Consequences of a Gluten-Free Diet.

The full study doesn’t appear to be available. This looks like a conference abstract.

That said, check out this table:

table

Total mercury in the blood is 1.7 times higher in people in the gluten-free diet group than in the overall population.

Now, it looks like the units in the table are ng/l, so a total mercury level of 1.3ng/l (that in the gluten-free group) is still well within the normal range (<10ng/l).

Of course it is also worth mentioning that those who promote the gluten-free diet for autistics often have the attitude that no mercury level is safe (which is tough, since there is mercury at some level in just about everything).

So, yeah, ironic but not dangerous. By pushing the gluten-free diet, people may have pushed autistic kids into higher levels of mercury in their blood.

Do we expect Robert Kennedy, SafeMinds, Mark Blaxill, JB Handley, Generation Rescue or any of the others in what was once called the “mercury militia” to inform their groups about this? Sure, if they are really about autism and not about attacking vaccines.

Which is to say, I doubt it.
—
By Matt Carey

ABC to present “Wacky Church Under Fire Over ‘Miracle Cure’ for Autism”

27 Oct

MMS. Miracle Mineral Solution. CD. Chlorined Dioxide. Call it what you want, it’s a scam. Worse than that, it’s abusive. And thankfully it’s getting some national news attention.

ABC’s 20/20 will present on Friday, Wacky Church Under Fire Over ‘Miracle Cure’ for Autism

Here’s one section of the website for the news segment:

“They’ve got their own Facebook group. There are people admitting to using this stuff on their children. Children are experiencing symptoms,” Eggers said. “You are doing it at the expense of these defenseless children. How, how, how can you not call that evil?”

MMS/CD whatever you want to call it, is sold with a bunch of science-sounding mumbo-jumbo. Believe me (a Ph.D. scientist with 30 years of experience), the explanations given by people like Kerri Rivera and Jim Humble for what MMS does amount to science nonsense.

Thank you ABC for taking this on. Please don’t walk away from this story, keep on it. We need this abuse to end.

—

By Matt Carey

Cochrane review: no clinical trial evidence was found to suggest that pharmaceutical chelation is an effective intervention for ASD

10 Sep

Chelation was never used by the majority of parents on their autistic kids. And that is a good thing. Chelation use is way down in the autism communities, but it hasn’t gone away. Many of those who use chelation are also vaccine antagonistic, and many of those rely upon the Chochrane reviews to support their vaccine-antagonistic arguments (generally by cherry picking and misrepresenting the Chochrane reviews). So, I was intrigued when I saw this abstract come up recently: Chelation for autism spectrum disorder (ASD).

A Chochrane team looked at the evidence for chelation and found that there is none.

A while back there was a plan for a chelation trial at the National Institutes of Health. It was cancelled when animal studies found a drop in cognitive scores when chelation was used without heavy metal intoxication. Which is to say, if you chelate someone needlessly, you could be shaving off IQ points. And since there is no evidence that autism is a form of heavy metal intoxication, chelation may actually have been harming already disabled kids.

I bring this up because the Chochrane review mentions a possible clinical trial in their last abstract sentence: “Before further trials are conducted, evidence that supports a causal link between heavy metals and autism and methods that ensure the safety of participants are needed.”

Yeah, I know that teams of people with MBA’s and other non-related degrees will tell you that there is evidence. As will doctors who sell chelation. Or recommend it (Hello, Dr. Bob Sears, I’m talking to you and your community of non-autism docs). They are wrong. And potentially harming autistic children.

Here is the abstract

Abstract
BACKGROUND:
It has been suggested that the severity of autism spectrum disorder (ASD) symptoms is positively correlated with the level of circulating or stored toxic metals, and that excretion of these heavy metals, brought about by the use of pharmaceutical chelating agents, results in improved symptoms.
OBJECTIVES:
To assess the potential benefits and adverse effects of pharmaceutical chelating agents (referred to as chelation therapy throughout this review) for autism spectrum disorder (ASD) symptoms.
SEARCH METHODS:
We searched the following databases on 6 November 2014: CENTRAL, Ovid MEDLINE, Ovid MEDLINE In-Process, Embase,PsycINFO, Cumulative Index to Nursing and Allied Health Literature (CINAHL) and 15 other databases, including three trials registers. In addition we checked references lists and contacted experts.
SELECTION CRITERIA:
All randomised controlled trials of pharmaceutical chelating agents compared with placebo in individuals with ASD.
DATA COLLECTION AND ANALYSIS:
Two review authors independently selected studies, assessed them for risk of bias and extracted relevant data. We did not conduct a meta-analysis, as only one study was included.
MAIN RESULTS:
We excluded nine studies because they were non-randomised trials or were withdrawn before enrolment.We included one study, which was conducted in two phases. During the first phase of the study, 77 children with ASD were randomly assigned to receive seven days of glutathione lotion or placebo lotion, followed by three days of oral dimercaptosuccinic acid (DMSA). Forty-nine children who were found to be high excreters of heavy metals during phase one continued on to phase two to receive three days of oral DMSA or placebo followed by 11 days off, with the cycle repeated up to six times. The second phase thus assessed the effectiveness of multiple doses of oral DMSA compared with placebo in children who were high excreters of heavy metals and who received a three-day course of oral DMSA. Overall, no evidence suggests that multiple rounds of oral DMSA had an effect on ASD symptoms.
AUTHORS’ CONCLUSIONS:
This review included data from only one study, which had methodological limitations. As such, no clinical trial evidence was found to suggest that pharmaceutical chelation is an effective intervention for ASD. Given prior reports of serious adverse events, such as hypocalcaemia, renal impairment and reported death, the risks of using chelation for ASD currently outweigh proven benefits. Before further trials are conducted, evidence that supports a causal link between heavy metals and autism and methods that ensure the safety of participants are needed.

—
By Matt Carey

Another study on the gluten free/casein free diet and autism. This time focusing on kids with a sign of “leaky gut”

9 Sep

I recently wrote about a study of the gluten free/casein free (GF/CF) diet and autistic kids. The kids in that study were put on the diet and then given snacks with gluten and/or casein and their behavior was monitored. And nothing happened. Breaking the diet did not cause increases in autistic behaviors. But people complained that the study size was small (valid complaint, but not a killer) and that the kids in the study didn’t have GI disease (again, not a killer for the study. The GF/CF diet is marketed as a very general autism “therapy”).

But I wrote the previous article knowing that another study had just come out. A study focused on kids with “severe maladaptive behavior” and a sign of the so-called “leaky gut” syndrome. Gluten and casein supplementation does not increase symptoms in children with autism spectrum disorder.

The abstract is below. The researchers looked at 74 kids with “increased urinary I-FABP” I-FABP is intestinal fatty acid binding protein. And this is considered a “marker of gut wall integrity“. The study team found this marker elevated in a number of their subjects from a previous study.

While it isn’t clear in the abstract, the autistics in the study were on a GF/CF diet

To our knowledge, our study is the first randomised controlled trial to study the behavioural effects of adding gluten and casein to the diets of children with ASD who were already on a GFCF diet.

So, they had autistic kids who were on the GF/CF diet and they gave some of them gluten and casein snacks and the others GF/CF snacks. For a week. And they looked at the changes in behavior.

Both groups–those given gluten and casein and those who weren’t–saw improvements on measures of behavior. But there was no difference between the two groups on the measures of behavior.

There was no regression. No children made more autistic by gluten and casein.

In other words, no indication that the diet was doing these kids any good.

Here’s the abstract.

AIM:
A gluten- and casein-free diet is often given to children with autism spectrum disorder (ASD). We aimed to determine the effect of gluten and casein supplementation on maladaptive behaviour, gastrointestinal symptom severity and intestinal fatty acids binding protein (I-FABP) excretion in children with ASD.

METHODS:
A randomised, controlled, double-blind trial was performed on 74 children with ASD with severe maladaptive behaviour and increased urinary I-FABP. Subjects were randomised to receive gluten-casein or a placebo for seven days. We evaluated maladaptive behaviour before and after supplementation, using I-FABP excretion, the approach withdrawal problem composite subtest of the Pervasive Developmental Disorder Behavior Inventory and the Gastrointestinal Symptom Severity Index.

RESULTS:
The mean approach withdrawal problem composite score was significantly higher before supplementation than after, both in the placebo and in the gluten-casein group. However, the mean difference was not significant and may have been caused by additional therapy. There was no significant difference in gastrointestinal symptoms and urinary I-FABP excretion.

CONCLUSION:
Administrating gluten-casein to children with ASD for one week did not increase maladaptive behaviour, gastrointestinal symptom severity or urinary I-FABP excretion. The effect of prolonged administration or other mechanisms of enterocyte damage in ASD should be explored.

©2015 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.

KEYWORDS:
Autism spectrum disorder; Casein-free diet; Gluten-free; Intestinal fatty acids binding protein; Maladaptive behaviour

There are a lot of limitations with this study, and the authors do discuss them. But, frankly, if the GF/CF diet were as good as people claim, this study would have shown at least some benefit.

—
By Matt Carey

Gluten Free/Casein Free diet and autism studied…and no sign of a benefit

9 Sep

Perhaps one of the more common alternative medical approach to treating autism is the gluten free/casein free diet. And alternative means–not demonstrated to be beneficial and, very often, not even well founded on sound reasoning. And by common, it appears that about 17% of parents have opted for some form of special diet, so GF/CF in particular is likely less than that.

The GF/CF diet (as it is often known) was first proposed based on the “opiod excess” theory and the “leaky gut” theory. Neither theory has shown itself to be valid.

A previous review found that “Currently, there is insufficient evidence to support instituting a gluten-free diet as a treatment for autism.” The clinical trial just published appears to be based on a study presented at IMFAR a few years ago.

The study was fairly simple–they put children on a GF/CF diet. They then gave the children snacks. Some contained gluten and/or casein. Some did not. The parents didn’t know which snacks were which. The behavior of the children was recorded and correlated against the inclusion of gluten or casein. And no benefit was observed. Here’s the study:

The Gluten-Free/Casein-Free Diet: A Double-Blind Challenge Trial in Children with Autism.

and abstract:

To obtain information on the safety and efficacy of the gluten-free/casein-free (GFCF) diet, we placed 14 children with autism, age 3-5 years, on the diet for 4-6 weeks and then conducted a double-blind, placebo-controlled challenge study for 12 weeks while continuing the diet, with a 12-week follow-up. Dietary challenges were delivered via weekly snacks that contained gluten, casein, gluten and casein, or placebo. With nutritional counseling, the diet was safe and well-tolerated. However, dietary challenges did not have statistically significant effects on measures of physiologic functioning, behavior problems, or autism symptoms. Although these findings must be interpreted with caution because of the small sample size, the study does not provide evidence to support general use of the GFCF diet

The study group is small, so it is possible they missed some benefit. But if the parent survey often quoted were correct and 69% of children showed a benefit, this study should have picked that up.

There are, of course, people who are sensitive to various foods. People both autistic and not. So some fraction of the population will benefit from elimination diets. But the idea that many promote of elimination diets as the first thing to try, no matter what (and there are people who do), is flawed at best.

—
By Matt Carey

Jim Carrey, you are part of the problem for us in the Autism Community

15 Jul

Years back Jim Carrey was and autism were mentioned together regularly in the news.  This was at the height of the vaccine misinformation campaign of his then partner, Jenny McCarthy.  Mr. Carrey went so far as to be a speaker at the “Green Our Vaccines” rally in Washington.  That was 2008. Since then the Green Our Vaccines as a movement has died, Jenny McCarthy has tried to distance herself from her very vocal stance on vaccines, and given that Mr. Carrey and Ms. McCarthy split, it seemed like we had seen the last of Mr. Carrey.

Until recently.

You see Mr. Carrey took offense to new legislation in California.  A bill that will roll back vaccine exemptions to where personal belief exemptions will no longer be accepted in the schools here.  In other words, for the most part one will now need an actual medical reason to avoid vaccination in order to register for public school.

Mr. Carrey took to twitter with his complaints about the new law.  All well and good, free speech and all.  But Mr. Carrey went too far. He decided to take pictures of kids in distress and the implication that this is what happens when you vaccinate your kids. One tweet read ““A trillion dollars buys a lot of expert opinions. Will it buy you? TOXIN FREE VACCINES, A REASONABLE REQUEST!”” and included a picture of an autistic kid (the other pictures he used appear to have been stock images). The story is discussed by Emily Willingham as Jim Carrey Unwittingly Brings Attention To Something Actually Linked To Autism

And Time Magazine in Jim Carrey Apologizes for Using Photo of Autistic Boy in Anti-Vaccination Tweet.

Because, to give him credit, Mr. Carrey did apologize to that family. (Ironically, it turns out that the kid was unvaccinated when he was first diagnosed autistic).

I harken back to Mr. Carrey’s time with the autism community (remember when Generation Rescue was tagged as “Jenny McCarthy and Jim Carrey’s Autism Organization”?). At one speech, probably the Green Our Vaccines Rally, Mr. Carrey made the pseduo-profound statement, “We are not the problem. The problem is the problem.”

So while I do appreciate Mr. Carrey stepping up and apologizing to one family, I do want to point out: Mr. Carrey, you were one of the problems for the autism community. And you apparently still are.

Ms. McCarthy introduced you to a closed group of people, a small sampling of the autism community. You likely came away thinking that they *are* the autism community, because that’s how they think of themselves.

They aren’t.

Most of us autism parents don’t subscribe to the vaccine causation idea. I can provide the links to multiple studies if you like, but it’s just the way things are.

And autism parents are not the autism community. One thing that Generation Rescue and like organizations have done is act like autistics are some sort of second class citizens in the community. Who do you think the community primarily is, autistics or parents?

Here’s the thing: the vaccine-causation idea is probably the most damaging notion to have hit the autism community. Did you hear about the “refrigerator mother” theory during your time at Generation Rescue? It’s second to the vaccine causation theory. Telling generations of disabled kids that they are less than they are, that they should be someone else, is damaging. Mr. Carrey, did you attend any of those parent conventions, like AutismOne? Perhaps you look at alternative medicine favorably. Well, the vaccine causation idea is used to sell “therapies” that aren’t close to being “alternative”. They are just wrong. And, frankly, abusive. Chemical castration of disabled children? This was promoted multiple times at conventions where your former partner was a keynote speaker. Fake diagnoses of mercury poisoning, followed by chelation? Same. And even a major promoter of chelation has a new study showing it doesn’t work. Did anyone tell you why the NIH autism/chelation trial was stopped? Because if you chelate test animals who do not have mercury intoxication, they go down cognitively. If the same happens in humans, tens of thousands of autistic children lost some IQ due to chelation. Think that one over, since GR started out as primarily an org promoting chelation. Daily bleach drinks and bleach enemas? That one is probably new since you dropped out. But, yep, that gets sold as a cure for “vaccine injury”. Shall I go on? Because I can. The autism=vaccine injury idea sells junk medicine which is subjected upon disabled children.

And you added your voice to the vaccine-causation idea.

You’ve apologized to one family. That took guts. Now step up and start making amends to the rest of us. Parents and, especially, autistics.

—
By Matt Carey

← Older Entries