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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

Here’s one part of Brian Hooker’s “reanalysis” that shows just how cynical the anti vaccine movement is

18 Dec

When my kid was diagnosed autistic I started reading research papers (I am a Ph.D. researcher by profession) and the raw data. One thing that struck me immediately was the fact that minority children are much less likely to get a diagnosis than white kids. And minority kids are diagnosed later.

This inequity really bothers me. Accurately identifying the needs of a disabled child can focus the appropriate therapies and supports on that child. The need to rectify this inequity is 100% accepted within the autism advocacy and research communities.

This inequity poses a problem to people who claim that autism is an “epidemic”. If we are not identifying all the autistics in any given group (we aren’t), autism prevalence numbers are inaccurate. Being inaccurate, how does one compare, say, one CDC prevalence number with one 2 years later and claim a “real” increase?

One can’t. Plain and simple.

So, for years, groups like those promoting the idea that autism is caused by vaccines have not only ignored this inequity, they have actively denied it. They are stuck between accepting that the data can’t show an epidemic, or accepting that minorities have some sort of protection from this supposed “autism as vaccine injury”.

When was the last time you read something from, say, the Age of Autism blog or Andrew Wakefield calling for efforts to end this inequity? You haven’t. They don’t do it. When have you heard from someone like Brian Hooker that we should study minority populations to see what “protects” them from “vaccine injury”? You haven’t.

Who is Brian Hooker? Brian Hooker is a parent of an autistic child. Brian Hooker strongly believes that vaccines cause autism. He can back this up with his observations of his child’s development. Observations which are contradicted by his child’s medical records. I discussed this before as Double checking Brian Hooker’s story in VAXXED. A Special Master (a judge in the vaccine court) put it very strongly:

After studying the extensive evidence in this case, I am convinced that the opinions provided by Petitioners’ experts in this case, advising the Hooker family that there is a causal connection between SRH’s vaccinations and either the initial causation or aggravation of SRH’s ASD, were quite wrong.

In the original, the Special Master emphasized “quite wrong“.

So, we have someone who believes vaccines cause autism to the point of ignoring the facts in front of him.

A few years ago Mr. Hooker “reanalyzed” some data from an old CDC study, suggesting that evidence showed that the MMR vaccine might increase risk in African American boys. That was discussed in great detail here and elsewhere. (for example: Brian Hooker proves Andrew Wakefield wrong about vaccines and autism and MMR, the CDC and Brian Hooker: A Guide for Parents and the Media).

Mr. Hooker’s study was retracted. In the research world thats a big deal. As in, embarrassingly bad.

Recently, as in 4 years after his original study, Mr. Hooker republished his “reanalysis”. In the Journal of American Physicians and Surgeons. I’d be completely embarrassed to have a paper in that journal, to be blunt. A lengthy discussion of this reappearance of the study can be found at Respectful Insolence as Brian Hooker’s antivaccine pseudoscience has risen from the dead to threaten children again.

Let me just focus on how Mr. Hooker, in my view cynically, abuses the African American community in order to attack vaccines. From the website of an organization Mr. Hooker belongs to (the ironically–to be polite–named “Children’s Health Defense”), we read this:

Main Points from Reanalysis:

The rate of autism diagnoses has increased alarmingly in the U.S., and is about 25 percent higher in black children. Boys are far more likely than girls to receive this diagnosis.

This is not only wrong, it’s wrong in a way that points to incredible dishonesty.

This first point is that autism is about 25% higher in black children. A “main point from the reanalysis”.

Tell me, when you read that did you think, “this study found that autism is more prevalent in African American children”? If so, you were misled. The 25% higher prevalence is from a different study than Hookers. And that other study says something completely different.

From the Hooker study:

However, one study showed that prevalence of autism in African-Americans was approximately 25% higher than that of whites when the data were adjusted for socioeconomic factors[7].

Reference [7] is Socioeconomic inequality in the prevalence of autism spectrum disorder: evidence from a U.S. cross-sectional study.

The Socioeconomic Equality study states:

Also notable is that, although the overall ASD prevalence was higher among non-Hispanic White and Asian children than among non-Hispanic Black or African-America and Hispanic children, when the results were stratified by SES, we saw that the racial/ethnic differences in prevalence varied by SES (Table 3). The lower prevalence among non-Hispanic Black or African-American and Hispanic children was seen only in the low SES category, and the fact that more non-Hispanic Black or African-American and Hispanic children live in poverty contributed to the lower overall prevalence among these groups.

Emphasis mine. Overall ASD prevalence was lower for African American children. Not 25% higher. This lower prevalence was due to lower socioeconomic status. I.e. poverty.

Want to see this a different way? Here’s a figure from the paper (click to enlarge):

The overall prevalence in White non-Hispanic kids was 6.9/1000. For black non-Hispanic kids it was 5.7/1000. About 20% lower. Not 25% higher as Mr. Hooker claims.

Fewer African American kids are getting autism services. Not because they aren’t autistic, but because their poverty keeps them from getting a diagnosis.

This is something we should be working towards fixing. No question. But don’t look to the anti-vaccine community to care or act. It’s an inconvenient fact for their epidemic story.

I guess he has such a low level of respect for the people in his own community (those who believe vaccines cause autism), that he thought no one would check this.

By the way, this paper isn’t the only one that shows a lower autism prevalence among African Americans. You know those CDC autism prevalence reports that come out every two years? Every single one has reported a lower prevalence among African Americans. Every one.

Here’s a line from the latest report:

Previous reports from the ADDM Network estimated ASD prevalence among white children to exceed that among black children by approximately 30% in 2002, 2006, and 2010, and by approximately 20% in 2008 and 2012.

When I saw the claim on Hooker’s organization’s website I figured he must have cherry picked a study that shows what he needed to make his story work. It’s just such common knowledge in the autism community that African Americans get diagnosed less frequently. It’s in every CDC report. I didn’t know he wasn’t cherry picking, he was just misrepresenting the study entirely.

I discuss this as a scientist. He “misrepresented the study”. My father had a word for that sort of behavior: lying.

OK, Brian. You’ve read the studies and decided to do nothing about the fact that many autistic African American kids aren’t getting identified and getting appropriate services. I get that, you have your own cause. But, really, is that community so much of a nothing to you that you can just use them like this? I ask rhetorically. You and your community have always acted with callous disregard.

I once had hope that as it because completely obvious that you and your community were wrong (and that was many years ago), you’d join the actual autism community and put your advocacy to use. I now know that will never happen. And, frankly, we don’t need dishonest people.


By Matt Carey

Why autism at 2.5% isn’t surprising.

29 Nov

Let’s get one thing out right away–autism prevalence studies undercount. Not all autistics are diagnosed. That’s just a fact. Consider the recent CDC study. They look at school and medical records. In many cases, they find children are autistic based on their records–but the schools and doctors hadn’t diagnosed those children.

Combining data from all 11 sites, 81% of boys had a previous ASD classification on record, compared with 75% of girls (OR = 1.4; p<0.01).

Yeah, more than 20% of the kids counted in their prevalence had no diagnosis. They and their families didn’t know.

And, if there isn’t enough in the records to show a kid is autistic? That kid gets uncounted altogether.

So, when people look at the CDC prevalence estimates from over the years and cry “epidemic”, well, there’s a reason why those people usually have some causation theory that they believe in. The irony is that they are usually wrong that their theory needs an epidemic to support it. But, heavily biased people are not usually the best sources of reliable analyses.

What would be a better method of counting how many autistics are in a population? Sounds obvious–test all the kids in a given population. Equally obvious–this is a much more expensive and difficult task. One such study was published in 2011. Yes, 7 years ago. In Prevalence of autism spectrum disorders in a total population sample, the autism prevalence in Korea was found to be 2.63%. A study performed in South Carolina and reported at IMFAR last year found a prevalence of 3.62%.

This all said, we had another autism prevalence come out this week–The Prevalence of Parent-Reported Autism Spectrum Disorder Among US Children. This study found a prevalence of 2.5%.

Now here’s a nice thing about this recent study–OK, two nice things. First, they don’t just look at kids of one age. Second, you can obtain the data. Which I did. Let’s look at the autism prevalence broken down by birth year.

Do you see autism prevalence increasing with birth year? I don’t. I see some scatter, but in general the autism prevalence is about 2.5% from birth year 2000 to 2010. For what it’s worth–the scatter is due to the small numbers of kids in each year making the value uncertain. It’s statistical noise.

If you are wondering about how the autism prevalence drops off above birth year 2010, keep this in mind: kids aren’t diagnosed at birth. In the CDC study, 1/2 of the kids didn’t get diagnosed until after 52 months (4 years 4 months) of age. For this type of reason, the more recent study didn’t count kids under 3 years of age.

People are very fond of graphing autism prevalence data from various years and claiming these are accurate, full counts of autism prevalence (they aren’t) and, from that, claiming an epidemic. Here are the CDC data:

The numbers go up. Steadily up. I’d have to be a total denialist to not see that as evidence of an epidemic, right?

Consider this–the CDC autism prevalence for birth year 2000 is 1.1%. The study just out gives an autism prevalence more than double that (2.9%). For the same birth year. Both are good studies, for what they are. Both are limited. But, for one thing, the CDC study was performed in 2008. 10 years ago. Since then a lot has changed. For one thing, the kids got older and had more chances to get diagnosed. They didn’t just suddenly become autistic in the past 10 years.

So, yeah, we have an autism prevalence estimate of 2.5%. I’m not surprised and I’m not taking this as evidence of an epidemic.

The unfortunate thing in this discussion is that with all the work in this study, all the potential for advocacy, the only number that usually gets discussed is the overall prevalence. Watch the video abstract (which I can’t get to embed). One of the authors goes into a lot of detail about the other findings. Findings I hope to discuss soon.

//players.brightcove.net/1327978102001/rkA3rSifl_default/index.html?videoId=5839990273001

By Matt Carey

VAXXED pulled in over $1.3M in donations, and most of it went to Wakefield and Tommey’s company

19 Nov

A few years ago Andrew Wakefield (one of Time Magazine’s Great Science Frauds) headed a team promoting a faux documentary called “Vaxxed”. I wrote about this film a great deal at the time, but suffice it to say it exemplified much of what is wrong with the way the anti-vaccine community uses and abuses the autism community.

If memory serves, VAXXED concluded with a long list of sponsors. So they apparently had a fair amount of money to work with to produce the film. The film was a product of the Autism Media Channel, which is a limited liability corporation (LLC) owned by Polly Tommey and Andrew Wakefield, based on tax records. At the same time, Vaxxed was associated with a charity: AMC Foundation. Said foundation is run by Andrew Wakefield with Polly Tommey and Brian Burrowes also listed as directors (at least on past tax forms).

Vaxxed came out in 2016, and nonprofit tax forms for 2016 are now public. Here are the tax forms for 2015 and 2016:

Here is the 2015 tax form.

And here is the 2016 (more interesting) tax form.

There are some very interesting details, but let’s focus on a few. Starting with in 2016 AMC Foundation took in $1,325,098 in contributions and grants. $1.3M. (click to enlarge)

$1.3M. Where did it go? Well, about $207K went to “other expenses”. Of that $50K was travel (they had a bus touring around promoting the movie, but they also had a gofundme campaign to pay for the bus if I recall correctly). Another ~$80k into “other” which doesn’t seem to be itemized. Click to enlarge.

And, then there’s the $1M that was given to the business arm of the Autism Media Channel. Click to enlarge.

As noted above, the Autism Media Channel LLC is owned by Andrew Wakefield and Polly Tommey. So that $1M is roughly $500,000.00 each. Of course, the business has to pay other expenses. For example, one assumes that Del Bigtree was not riding along the tour for free. Also, we don’t know how much of the original expenses for producing VAXXED may have needed to be paid off. Of course, had Ms. Tommey and Mr. Wakefield chosen to pay themselves through the charity arm of VAXXED, we would know the amount. That’s called transparency. Given how large this sum is, transparency would seem to this observer to be a necessity. Also, given how much the VAXXED team complains about lack of transparency, this action strikes me as completely hypocritical. click to enlarge.

Perhaps keener eyes than mine can find where any of the money went to, say, help any of the families who Wakefield and Tommey were so eager to include in videos. Or to perform research on autism and/or vaccines. Or anything that, well, would seem charitable. I guess some would think supporting the next film–by the profit generating business–is a charitable act. By shifting the money to their LLC business, we can’t see how much was paid directly to Mr. Wakefield and Ms. Tommey. Which, in itself, is a practice that bothers me. A prime reason to donate to a charity (rather than, say, offer support for a film directly) is to gain transparency. Note that in 2015, the charity did list salary for Ms. Tommey as well as expense for “FILM PRODUCER. PROGRAM EXPENSES”, which one might reasonably consider as a payment to Del Bigrtree (the producer of Vaxxed). So they apparently chose to stop listing salary/payments in 2016.

Recall that in the past Mr. Wakefield was paid $270K/year at Thoughtful House and, after that job ended, tax records for his charities set his salary at the same annual rate.

I profess to be no expert on taxes or the structure of charitable institutions. In my opinion this transfer of funds is at the very least a questionable practice. Money was collected through a charity–giving donors a tax advantages–and mostly diverted to a business run by the same people as heading the charity. Aside from the fact that I would never willingly let Andrew Wakefield or Polly Tommey get a dime of my money, I personally would not be pleased if money I was donating was handled in this way. But Mr. Wakefield’s supporters have been looking the other way and accepting his excuses for over 20 years. I doubt this will bother many of them at all. If any.


By Matt Carey

Proud of You

16 Nov

I had the privilege of presenting a second piece on KQED Radio’s Perspectives. The piece, Proud of You, aired earlier this week. The audio is on KQED’s site.

When we were expecting our son a doctor told us he would be very disabled. I had feared hearing that and yet I had never prepared myself. I didn’t even know what questions to ask. After many sleepless nights the question came to me. I called a friend of mine whose daughter is disabled and asked simply, “Is she happy?” Yes, he told me, she is generally happy.

I didn’t know whether my son would be able to be happy. In our society we often equate disability with unhappiness.

A few days later we learned this was a misdiagnosis.

When my son was two we realized he was disabled, for different reasons. There were suddenly far too many things to do than we could manage. But I never thought, “My son and I should set an example.”

I did want to make sure my son got out into the world. For him. I knew it would be very easy to retreat to our home. So we go into the community as often as we can.

People notice us. Once, a man approached us. He was very upset as he was trying to come to terms with his mother’s dementia. He saw a parallel between his mother and my son. And he noticed that my son and I very much enjoy our time together, even though we are very different.

My mother had recently passed away after years of dementia. I told my neighbor what I had learned from my son. This person in front of you is still a valid person. My son is very different from other children. My mother was different than she was when we were younger. But I learned to enjoy the time I have with the people in front of me rather than comparing them to some “normal” person.

I told my son, “I’m talking about you because I’m proud of you.”

People notice my son and me. Sometimes they see us struggle. Struggle hard. Often they see us enjoy our time together.

I don’t mind that people notice us. When they do, I remember when my friend helped me, when my son taught me to accept my mother. And I hope that our struggles and our joys set an example for others.

With a Perspective, this is Matt Carey.

Want to understand acceptance? Listen to I am what I am

8 May

This weekend I saw another production of La Cage Aux Folles. The song “I am what I am” has long been one of my favorites, and the lyrics are posted in my kid’s room. I’ve posted this before, with some explanation. This time, I invite you to listen, read the lyrics and, if you don’t understand why I feel this is so fitting: ask.

I am what I am
I am my own special creation.
So come take a look,
Give me the hook or the ovation.
It’s my world that I want to take a little pride in,
My world, and it’s not a place I have to hide in.
Life’s not worth a damn,
‘Til you can say, “Hey world, I am what I am.”
I am what I am,
I don’t want praise, I don’t want pity.
I bang my own drum,
Some think it’s noise, I think it’s pretty.
And so what, if I love each feather and each spangle,
Why not try to see things from a diff’rent angle?
Your life is a sham ’til you can shout out loud
I am what I am!
I am what I am
And what I am needs no excuses.
I deal my own deck
Sometimes the ace, sometimes the deuces.
There’s one life, and there’s no return and no deposit;
One life, so it’s time to open up your closet.
Life’s not worth a damn ’til you can say,
“Hey world, I am what I am!”


By Matt Carey

One line from the CDC Autism Prevalence report you will likely never see quoted

28 Apr

The CDC came out with an autism prevalence estimate a few days ago. There have been a number of news stories on the subject and the usual attempts by credulous websites to use this to claim that vaccines cause autism.

It’s right there at the top, in the interpretations section of the abstract:

Because the ADDM sites do not provide a representative sample of the entire United States, the combined prevalence estimates presented in this report cannot be generalized to all children aged 8 years in the United States

The Age of Autism blog (as noted already, always a good place to look for people getting it wrong on autism) ran a piece “Breaking News: 1 in 59 children Born in 2006 have Autism, 1 in 36 between the ages of 3 and 17. What’s going on?” Because, you know, claiming an epidemic is in their mission statement.

SafeMinds, another organization promoting the failed “vaccine-induced-epidemic” idea of autism wrote:

Baltimore, MD, April 26, 2018 – SafeMinds, along with other national autism advocacy organizations, sent a letter today to Department of Health and Human Services (HHS) officials demanding a meeting within the next 30 days to discuss the creation of a Federal Autism Strategic Plan to address the nation’s autism crisis. The urgent letter follows the release of a report this afternoon by the U.S. Centers for Disease Control (CDC). The CDC report found that autism is now diagnosed in one in every 59 American children, representing 2 ½ times more autism in 12 years and a 15 percent increase in just two years.

First, there is an Autism Strategic Plan. A member of SafeMinds helped craft it with HHS while she was on the Interagency Autism Coordinating Committee. She voluntarily decided not to pursue another term on the IACC.

Second, your reason is that ” The CDC report found that autism is now diagnosed in one in every 59 American children”. The CDC told you explicitly in the first few paragraphs that can’t be said.

But I do appreciate that you are implying no epidemic among children. You clearly state that the rate is the same for all American children, not just the 8-year old children of the CDC study. Or did you miss that important point?

So, good luck with that letter. I’m sure your readership will not notice the problems with your logic, but HHS will.

There are more examples, but these make the point.


By Matt Carey