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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

‘Miracle autism cure’ seller exposed by BBC investigation

12 Jun

The BBC have a new story taking on the so-called “Miracle Mineral Supplement” in ‘Miracle autism cure’ seller exposed by BBC investigation.

MMS (AKA chlorine dioxide, CD, or part of a so-called “parasite protocol”) is a bleach solution produced by mixing two chemicals which are sold separately and manufactured often in rather dubious factories. Case in point, the BBC tested the chemicals they were given and found they were much stronger than labeled.

Through his website, Mr Edwards, who says he is not attending the conference, sold the researcher the one bottle of liquid labelled as 22.4% sodium chlorite and a second labelled as 4% hydrochloric acid.

When the BBC sent the chemicals to Kent Scientific Services, an independent laboratory, they were found to be 57% and 45% stronger than the advertised concentration respectively.

The BBC approached a seller of MMS and purchased the chemicals. The person selling MMS, one Leon Edwards, made the usual huge claims: it cures malaria, HIV, cancer and, of course, autism. Of course they don’t say “cure”, they say in this case “purge”.

MMS is a scam, plain and simple. It is sold as a cure to autism parents for use on their disabled children. The sales pitches present it with the usual approach: claims of children “recovered” together with some scienc-y sounding discussion to make it seem legitimate. And, of course, if you blame vaccines for autism and claim your product somehow heals vaccine injury, you will get nothing but support from a vocal group of autism parents.

Fiona O’Leary–an autism parent–is quoted in the story. She’s been a major advocate for autistic kids through her efforts to expose MMS.

Fiona O’Leary, a mother of two autistic children, is a leading campaigner against MMS. She warned: “This has been offered as a cure for autism in 60 countries.

“What worries me is people normalising this treatment – it does not even warrant the word treatment, autism is not a ‘disease’ that you can ‘cure’ with bleach.

“We need legislation so that people offering it are always prosecuted, but we don’t see the authorities addressing this issue.”

She added: “The suffering children are going through is shocking – it’s child abuse.”


By Matt Carey

If MMS, CD, chlorine dioxide, “parasite protocol” is safe, why does ClO2 dissolve tissue?

15 Jan

One of the marketing ploys for MMS* is that it somehow attacks viruses, bacteria, parasites, heavy metals, toxins and more but doesn’t affect human tissue. It’s safe! Of course this is from the same people who said that it isn’t a bleach. Emily Willingham did a very simple and elegant demonstration that, MMS: Yes, It Is Bleach. Put a few drops on a black cloth and, lo an behold, it bleaches it.

photo+%25286%2529[1]

I thought about taking this to the next step–putting some drops on raw meat to see how much tissue would be bleached. Then I thought, I wonder if there’s a study on this already? Consider this paper, Comparison of Organic Tissue Dissolution Capacities of Sodium Hypochlorite and Chlorine Dioxide (full paper here).

Organic tissue dissolution capacity. In other words: how well do these solutions dissolve tissue.

According to the main site promoting MMS as an autism cure:

What is MMS?

MMS stands for Master Mineral Solution. It’s chemical name is Chlorine Dioxide (ClO2). ClO2 is a gas that is produced as a result of combining 2 liquids, Sodium Chlorite (NaClO2) and citric acid. When added to the sodium chlorite, the citric acid brings the combined pH level to under five, causing the sodium chlorite to become unstable and release chorine dioxide. (ClO2) Chlorine dioxide is an oxidizer with a lower oxidation potential (.95 V) than any of the other oxidizers in the human body.

MMS starts out as sodium chlorite, not the hypochlorite as mentioned in the paper. But the final solution contains ClO2, the same as one tested in the above paper. In that paper they were exploring whether these solutions (sodium hypochlorite and ClO2) could be used in dental work. They wanted to test whether ClO2 solutions would have an effect on tissue, in this case the pulp from the inside of teeth. They already knew that sodium hypochlorite dissolved tissue.

What did they find? When they put tooth pulp (taken from cows) into these solutions, after 20 minutes about 28% of the tissue was dissolved.

Dissolved.

In ClO2 solution.

But wait, you say. That’s a paper using cow teeth, published in Turkey. Realizing that this argument would come up, I searched for more papers. Such as Effect of chlorine dioxide and sodium hypochlorite on the dissolution of human pulp tissue e An in vitro study. Which concludes

5% Chlorine dioxide is capable of dissolving human pulp tissue but sodium hypochlorite was more effective.

Or

Comparison of Organic Tissue Dissolution Capacities of NaOCl and ClO2

Conclusion: Within the limitations of this in vitro study, it was concluded that ClO2 is efficient as well as NaOCl in dissolving organic tissue.

Not all tissues are the same. Skin, especially the dead skin in the outer layer, is likely more resistant than tooth pulp. But, how about the intestinal lining (a consideration for those using this as an enema solution)? Or once absorbed in the stomach (for those taking an oral route) or the esophagus?

OK, it dissolves tissues. But why go to these papers? How about just looking at the MSDS? People have long brought out the MSDS for thimerosal to tell us that it should be removed from vaccines. The MSDS for thimerosal shows that the LD50 level (the exposure where 1/2 of the test animals died, lethal dose 50) is Acute oral toxicity (LD50): 75 mg/kg [Rat] for thimerosal. A chlorine dioxide solution of 0.054 weight% Chlorine Dioxide is less toxic than thimerosal, with an LD50 (oral) rats: 292 mg/kg. So, it would take about 4 times as much chlorine dioxide solution at this concentration to kill a rat as thimerosal.

The thing is, people don’t drink thimerosal solutions. Or do so repeatedly. People are encouraged to drink MMS.

Consider what happens if we increase the concentration of ClO2. Up the concentration to 3% ClO2 in water and it is as toxic as thimerosal. But, again, dose makes the poison and the dose of ClO2 from MMS is much higher than the dose of thimerosal from a vaccine.

The idea that MMS, or CD or Chlorine Dioxide is somehow a magical solution which rids the body of harmful substances while having no effect on human tissues is just flat out incorrect. It dissolves organic tissue. It’s toxic and the doses are significant.

(*MMS is “miracle mineral solution”, a relatively new bit of alternative medicine that is being sold as an autism cure. It has been promoted at parent conventions such as Autism One and by the blog The Age of Autism. It is a scam and if the discussion above wasn’t clear: it should be avoided.)


By Matt Carey