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Yes, California children are dying of measles. Today. It’s called SSPE. Andrew Wakefield, Del Bigtree, Polly Tommey, stop lying about it.

2 Nov

One of the very frustrating aspects of the vaccines-cause-autism myth is that my community–autism parents–are largely responsible for spreading the misinformation and the fear. One need only look at Jenny McCarthy, Generation Rescue, the National Autism Association, TACA (Talk about Curing Autism), Polly Tommey, and almost any online discussion about vaccines to see the misinformation being spread by autism parents.

Listen to someone spreading the fear about the MMR vaccine and you will almost always hear, “measles doesn’t kill”. I’ve heard it a number of times from Andrew Wakefield. Remember him? He’s the guy whose unethical research 20 years ago fueled the fear we have today. His current effort is a fake documentary called “Vaxxed”. His team includes Del Bigtree (a former actor and low level producer for daytime TV) and Polly Tommey (an autism parent and Wakefield ally). As part of their PR tour for their film, they’ve given a number of personal appearances and posted video to Facebook. Watch them a few times and you will see Wakefield’s team–especially Del Bigtree–that measles is not a fatal disease. That no one has died of measles in California, they say. Del Bigtree focuses on California a great deal. He’s from California. California had a sizable outbreak recently and, partially as a result of that, changed their laws on vaccines for students.

Del Bigtree is wrong, as he usually is. Measles does kill. The death rate in France over the past decade has been about 1 in 2000, And that’s the number for people killed during the infection. The recent outbreaks in California have not resulted in immediate deaths, but we haven’t had outbreaks as large as those in France. However, measles is killing people in California right now. It’s killing them with the long-term infection called SSPE. People in California have died in recent years, and one is currently dying of SSPE. SSPE is incurable. It’s a slow, agonizing death.

Want more facts about SSPE?

What is Subacute Sclerosing Panencephalitis?
Subacute sclerosing panencephalitis (SSPE) is a progressive neurological disorder of children and young adults that affects the central nervous system (CNS). It is a slow, but persistent, viral infection caused by defective measles virus.

and read more from that same site:

What is the prognosis?
Most individuals with SSPE will die within 1 to 3 years of diagnosis. In a small percentage of people, the disease will progress rapidly, leading to death over a short course within three months of diagnosis. Another small group will have a chronic, slowly progressive form, some with relapses and remissions. A very small number (approximately 5 percent) may experience spontaneous long term improvement and regain lost function. Prevention, in the form of measles vaccination, is the only real “cure” for SSPE.

You can read more but here’s what we are talking about: in addition to the people who die from measles infections, measles infects the brain in some people and they die. They die over years, slowly losing function. Spending years knowing death is coming.

And a recent study shows that SSPE has been happening in California. People have died in recent years. Someone is dying right now of SSPE.

There are a number of news stories about this. Below is the abstract from the conference.

Subacute Sclerosing Panencephalitis: the Devastating Measles Complication is More Common than We Think

Background: Subacute sclerosing panencephalitis (SSPE) is a fatal complication of measles. Thought to be rare, SSPE incidence decreased with routine measles vaccination, but infants with measles remain at highest risk of this complication. We reviewed SSPE cases in California from 1998-2016 to understand current risk factors for SPPE.

Methods: SSPE cases had a clinically compatible illness and either 1) measles IgG antibody detection in the cerebrospinal fluid; 2) characteristic pattern on electroencephalography; 3) typical histologic findings in brain biopsy; or 4) medical record documentation of SSPE-related complications. Cases were identified though a state death certificate search, reports from the Centers for Disease Control and Prevention, or through investigations for undiagnosed neurologic disease. Measles IgG detection was performed using indirect enzyme immunoassay at the California Department of Public Health (CDPH) or by immunofluorescence assay at clinical laboratories.

Results: Seventeen SSPE cases were identified. Males outnumbered females 2.4:1. Twelve (71%) cases had a clinical history of a febrile rash illness compatible with measles; all 12 had illness prior to 15 months of age and measles vaccination. Eight (67%) children were living in the United States when they had measles. SSPE was diagnosed at a median age of 12 years (range 3-35 years), with a latency period of 9.5 years (range 2.5-34 years). Many cases had long-standing cognitive or motor problems prior to diagnosis. Among measles cases reported to CDPH during 1988-1991, incidence of SSPE was 1:1367 for children < 5 years, and 1:609 for children < 12 months at time of measles disease.

Conclusion: SSPE cases in California occurred at much higher rate than previously published among unvaccinated children who were infected with measles in infancy. Protection of infants younger than 12-15 months of age, when measles vaccine is routinely administered, requires avoidance of travel to endemic areas, or early vaccination prior to travel. Clinicians should be aware of the possibility of SSPE in patients with compatible symptoms, even in older patients with no specific history of measles infection. SSPE demonstrates the high human cost of “natural” measles immunity.

Let’s pull that last sentence out for emphasis:

SSPE demonstrates the high human cost of “natural” measles immunity.

The study above is based on something called data. Del Bigtree bases his arguments on a Brady Bunch episode.

No, I’m not making that up, Del Bigtree claims that since there was a Brady Bunch episode about measles, it must not have been a big deal in the 1960’s. That’s about as logical as saying, “well, there was this TV show about being in the Marines called ‘Gomer Pyle’. So, obviously, the Vietnam War was no big deal.”

I have zero belief that Del Bigtree (or Jenny McCarthy, Generation Rescue, the Age of Autism blog, Andrew Wakefield, or any of the rest) will change their claims that “measles is no big deal”. Why? Because Del (and the rest) are cowards. It takes guts, serious courage, to stand up and say, “I was wrong”. It takes guts to break from your community and say, “people, this position is dangerous”.

It takes the sort of courage that Del Bigtree and the rest just do not have.


by Matt Carey

There was a big legislative battle here in California last year, where the hell were you faux autism advocates?

26 Oct

This past year we have been fighting a big battle here in California.  We were fighting to restore some of the services funding we’ve lost over the preceding years.  We were trying to get a 10% increase in services funding, which wouldn’t make up for what we’ve lost over the years, but would be a big step forward.

This was a long fight, and one that we didn’t initially win. Even though we fought hard from the start, the budget did not include any increase for disability services. We could have used some help, more voices from the advocacy community. Even though we lost at first, advocates kept trying and finally got a 7.5% increase.   And that’s a victory.  The Arc of California/United Cerebral Palsy were working hard organizing the effort, organizing call in campaigns, fax campaigns and in-person activism in the state capital.  Other groups, such as the Autistic Self Advocacy Network were also helping, as were others.

But here’s the thing: you wouldn’t know any of that if you were only following the vaccines-cause-autism focused groups and people.  These groups claim to be autism organizations. Many of them based on California. We have an individual, a doctor, who claimed to represent “all the autistic students in California”. We had people making a fake documentary dishonestly pushing the idea that vaccines cause autism. Including people who live in California. People, organizations who did nothing to help in this very real effort to improve the lives of people with disabilities in California.

The thing is, these groups and people were very active lobbying for change. They mounted a large, loud, self-destructive effort to stop a vaccine bill here, SB277.

Yes, instead of doing anything, anything at all, to work towards restoring lost services funding, they were lobbying against a vaccine bill.  Not “lobbying against a vaccine bill and working for a restoration of services.”  Just lobbying against a vaccine bill.

By the way, “lobbying” is a very nice term. They fought, and not in the good sense of the word. They fought a nasty, dishonest fight. And lost. Hard.

Or to put it simply, they were wasting their efforts.  Working like vaccine antagonistics, not people interested in a better life for people with disabilities.

Let’s go through a partial list of those who failed in this effort.

The Age of Autism blog.  Article after article on the vaccine bill.  Nothing on the budget battle that I can see.  They are still going on about their failed efforts, harassing the legislator who spearheaded the bill.  AoA writer Kent Heckenlively lives here in California.  AoA founder JB Handley used to live here.  Kim Stagliano there wrote about the lack of adult services, blaming the lack of of services on people pushing for acceptance.  Here’s the thing, Kim, and sorry for how direct this is.  You’ve wasted over a decade running a blog that diverts efforts away from critical areas.  You aren’t just wasting your time, you are making other people focus their efforts away from making those adult services we so desperately need.  And this is not even counting your whole blog actively denying the existence of undiagnosed autsitic adults.  You know what?  If legislators knew there were a lot more autistic adults they just might be interested in doing something.  Tell them that there’s an “epidemic” coming along, hitting when some other legislator is in office, and they do nothing.

Robert “Dr. Bob” Sears.  You were perfectly willing to advocate, but just not for this bill?  Seriously, you took time off work to fly up to Sacramento and claim you represent all autistic students in California, but only to fight a vaccine bill.  Here’s the thing “Dr. Bob”, autistic students need advocates who are going to get them more services.  If you really think you represent all autistic students, you failed.  Failed hard.  Because I never saw you do a damned thing for kids. I never saw you do anything to help improve services.

Andrew Wakefield, Del Bigtree, Polly Tommey and the rest of you behind the fake documentary “Vaxxed”. Bigtree, you live here. Apparently you have no real connection to the disability community, just the vaccine-antagonistic groups. I hope so, because your disregard for our needs is striking. Wakefield, you have been a self-serving leach on our community for two decades. Expecting you to actually do something of value is something I gave up upon many years ago. Bigttree and Wakefield, you are using us, causing harm and giving nothing in return. Polly Tommey, you should know better. You should be doing something real, not just putting out junk films (apologizing for the brutal murder of Alex Spourdalakis? Shame on you, Polly Tommey). But, hey, you get paid to make a film that attacks vaccines by misrepresenting (let’s just call it what it is, lying) facts.

TACA, Generation Rescue, Jenny McCarthy, National Autism Association (and more): You are based in California. Please tell me I just missed your advocacy to make a real difference for people with disabilities here in California. Please tell me that when I just went over your blogs, I missed the articles calling for your membership to call in to legislators to support the budget increase. You have been downplaying your damaging support of the vaccines-cause-autism failed idea now. Why not actually do something valuable with your efforts? Selling families on fake therapies (stem cell clinics in Cancun, “ion cleanse” to treat autism and the rest), doesn’t count.

It would be one thing if you were just wasting your time fighting losing battles for bad causes. It would be one thing if you were just ignoring the real work that needs to be done. If would be one thing if you were just pulling advocates away from improving the lives of the disabled, pulling them away to attend rallies for useless, failed causes.

At this point you are probably expecting me to say something that amounts to “history will not look kindly on you”. The sad thing is that history will forget you. Will forget the harm you caused. Will forget that when the time came to really stand up and make a difference, you were somewhere else.

No one will remember me either. Or the hundreds of people who really carried the weight of change, both in the budget battle and elsewhere. That’s not what this is about. It’s about making change. Change for the good. I know you’ve convinced yourself that this is, indeed, what you are doing. Good. I also know you won’t change.

The vaccines-cause-autism idea is without a doubt the most damaging belief to have hit the autism communities. The “refrigerator mother” theory is a distant second. The idea that vaccines cause autism causes parents to live a life of shame and guilt for participating in something that didn’t happen. This guilt feeds the charlatans that sell fake “therapies” that are inflicted on children and adults in our community. And as long as these charlatans say “vaccines cause autism”, you never speak out about them. You join them in fake conferences or even host them for conferences where they sell their wares. And you divert advocacy away from topics like the budget battle, from actually improving the lives of people with disability, and instead focus advocacy efforts on fighting a battle you lost over a decade ago.

By Matt Carey

No, Wakefield’s Autistic Enterocolitis Does Not Exist

2 Sep

Listen to Andrew Wakefield talk for a while and he will tell you his work has been replicated. Usually claiming replicated multiple times and around the world. Since he says it, it gets repeated by his supporters in online discussions.

For those who get dragged into those discussions, here is another paper to reference. This one takes on the idea that there is a bowel disease specific to autism. Wakefield’s “autistic enterocolitis”

People have looked and, guess what, it isn’t there. Yes, autistics get bowel disease. Being autistic doesn’t prevent bowel disease. The fact that some do, indeed, get bowel disease isn’t what Wakefield claimed. He claimed a “new syndrome”.

It doesn’t exist.

Here’s the abstract. The group is reputable and, in fact, has expressed sympathetic views towards Wakefield.

Evaluation of Intestinal Function in Children With Autism and Gastrointestinal Symptoms.

OBJECTIVE:
Alterations in intestinal function, often characterized as a “leaky gut,” have been attributed to children who are on the autism spectrum. Disaccharidase activity, intestinal inflammation, and permeability were analyzed in 61 children with autism and 50 nonautistic individuals with gastrointestinal symptoms.

METHODS:
All patients had duodenal biopsies assayed for lactase, sucrase, maltase, and palatinase activity. Intestinal permeability was evaluated by rhamnose/lactulose test and measured by high-performance liquid chromatography-mass spectrometry. Intestinal inflammation was evaluated by fecal calprotectin and lactoferrin levels using enzyme-linked immunosorbent assay and histology.

RESULTS:
Some children with autism had mild levels of mucosal inflammation on intestinal biopsy. Disaccharidase activity was not different in autistic and nonautistic individuals. Fecal calprotectin and lactoferrin were similar in both groups. Differences between lactulose and rhamnose recovery and lactulose/rhamnose ratio in urine were not statistically different in patients with and without autism.

CONCLUSIONS:
The present study supports the observation that children with autism who have symptoms of gastrointestinal disorders have objective findings similar to children without autism. Neither noninvasive testing nor endoscopic findings identify gastrointestinal pathology specific to autism, but may be of benefit in identifying children with autism who have atypical symptoms.

If you are getting ready to write, “but they might not have seen enough kids to find one with autistic enterocolitis”, according to Wakefield, most of the kids his team tested had his “new syndrome”. If that were true, this team would have found it.

Add this to “MMR causes autism” as one of the failed ideas of Andrew Wakefield. Not that he will ever admit it.


By Matt Carey

Andrew Wakefield. He’s not anti-vaccine. He just thinks “This is a deliberate eugenics program, a deliberate population-control program.”

19 Aug 1471357679-pmx090116-conspiracycruise19

Remember the “ConspiraSea Cruise”? Well another story has come out on it, this time from Popular Mechanics: I Went on a Weeklong Cruise For Conspiracy Theorists. It Ended Poorly.

I feel bad for grabbing one line from the story, as the whole story is quite good. But for now, let’s just take a look at this one paragraph:

“Your bodies are owned by Big Pharma,” he said. “It’s turning into a science-fiction movie.” The audience gasped and shook their heads in disbelief. “This will be the end of the United States of America.” During the Q&A portion, Wakefield added, “This is a deliberate eugenics program, a deliberate population-control program.”

“This is a deliberate eugenics program, a deliberate population-control program.”

I’ve been told this was in response to a question about vaccines possibly being a part of a eugenics program.

This is the sort of statement Mr. Wakefield typically has avoided making public. It’s the sort of statement that plays well on the “ConspiraSea Cruise”, but in more reasoned company is clearly wrong and irresponsible. It’s the sort of statement that goes against the image of Wakefield as the “legitimate scientist who is wronged for ‘just asking questions'”.

I have no idea how Mr. Wakefield defines “anti-vaccine”. Readers here will recognize that I rarely use the term. So, let’s continue in that mode. Let’s not refer to him as “anti-vaccine”. He is strongly, and irresponsibly, and using misinformation, “anti-vaccine-program”. How can someone who believes that vaccines are “a deliberate eugenics program, a deliberate population-control program” be anything else?

1471357679-pmx090116-conspiracycruise19


By Matt Carey

Polly Tommey, she won’t judge autism parents who murder, but judges Fiona O’Leary for just criticism

12 Aug

Readers here may recall this recent article: Polly Tommey won’t judge parents who murder their disabled children. That’s part of the problem. We discussed this video where Polly Tommey tells us about how she won’t judge parents who murder their autistic children.

In a later video she used the “I haven’t walked in their shoes” excuse.

Since then Ms. Tommey, through her film distributor Cinema Libre Studio, has threatened to sue an autism parent. An autistic autism parent. Fiona O’Leary: Cinema Libre Studios and Andrew Wakefield’s Vaxxed team threaten autistic autism mom.

In a more recent video she has posted she flat out judges Fiona O’Leary.

“She’s a pain, that woman”.

“She claims to be on the spectrum. In that case I feel bad for you.”

“She hasn’t seen the film” (Fact check–Fiona has, indeed, seen Vaxxed.)

Here’s a word for Polly Tommey:

Hypocrisy

hy·poc·ri·sy

The practice of claiming to have moral standards or beliefs to which one’s own behavior does not conform; pretense.

Kill a kid: you will not be judged.

Criticize Polly Tommey: you will be judged.

Someone has her priorities seriously out of order. And it’s not Fiona O’Leary.


By Matt Carey

Irish Examiner: US film studio threatens to sue autism-rights advocate

26 Jul

As I wrote about yesterday, Andrew Wakefield’s “Vaxxed” team, led by distributor Philipe Diaz of Cinema Libre Studio, threatened Fiona O’Leary (an autistic adult who is also the parent of autistic children). Well, it looks like the story has been picked up by the Irish Examiner.

The article starts:

A US film studio has threatened to sue an Irish autism-rights advocate if she continues to speak out against its controversial anti-vaccine documentary, Vaxxed: From Cover-Up to Catastrophe,.

West Cork-based mother, Fiona O’Leary, who wants to block the film’s release in Ireland and Britain, said she was outraged to receive a legal letter from California-based Cinema Libre Studios over the weekend.

Read the rest at US film studio threatens to sue autism-rights advocate


By Matt Carey

Del Bigtree crosses the line: tells Vaxxed audience “Now’s the time” for guns.

19 Jul

Del Bigtree helped Andrew Wakefield produce a faux documentary called Vaxxed. Vaxxed has been discussed here and elsewhere a great deal, but here is a review from Science Based Medicine if you are looking for more details (Andrew Wakefield’s VAXXED: Antivaccine propaganda at its most pernicious).

The team that made Vaxxed has been using the screenings as a platform to give personal appearances. Below is a clip from one of those personal appearances. I would encourage you to watch for yourself:

In case you couldn’t watch or skipped the video, here are the concluding statements of this particular speech by Mr. Bigtree:

“Anyone who believes in the right to bear arms. To stand up against your government. I don’t know what you were saving that gun for then. I don’t know when you planned on using it if they were going to take control of your own body away.

It’s now. Now’s the time.”

We need to stop here and do what neither Polly Tommey nor anyone in that audience had the guts to do: stand up to Del Bigtree and say No! No, this is not the time to use guns.

This is no joking matter. Bigtree’s comments are at best beyond irresponsible and at worst a call for armed violence.

Whatever was in Bigtree’s mind, why didn’t anyone speak out against this? There was nervous laughter when Bigtree made his call to arms so people can’t claim they didn’t hear or didn’t understand what he was suggesting. Here’s the Facebook post with the full video. There are over 1500 comments. And I can’t find one that says, “No, Del, we reject a call to violence.”

I want to keep this short, but I will repeat myself for emphasis: Del Bigtree crossed the line in a big way with his comments. His comments are reprehensible.

But standing by silent while he makes these reprehensible statements is also wrong.

Ironically Del Bigtree’s facebook page has this as the top saved image:

13529029_1095999520470545_3497709959753327622_n

You fans of Del Bigtree, you need to walk the walk. Stop patting yourselves on the back for being “brave” and show that you are indeed brave individuals. Disavow these statements.

Del Bigtree, you need to dial this back. You need to apologize and take back these statements.

By Matt Carey