Colin here, taking over the job Jennifer’s graciously been doing by editing and posting my own writing. I’m no longer on the ConspiraSea Cruise doing research for a book on irrational beliefs. Now I’m home (briefly) and writing up my experiences. This is a fuller explanation of what happened on the fifth day. You can read Day 1 here, Day 2 here , Day 3 here, Day 4 here, Day 5 Part 1 here, and an explanation for what I was doing here.
I have just one more full day to go, then a very personal post about the very last morning of the cruise. I want to move forward quickly because we aren’t done after that. In the future I’ll write in more detail about individual presentations and my thoughts about what the conference has to teach us about irrational ideologies and the debates around those beliefs.
In the last post, I explained how I wound up as the primary audience of a long, angry lecture by Andy Wakefield. Here’s a much more detailed explanation of what happened, and some thoughts on why it happened and why it matters.
And I apologize in advance for the fishing puns. Honestly, I tried to stop.
The pseudoscience community has long tried to convince parents that the MMR vaccine (to prevent infection with the diseases measles, mumps, and rubella) causes autism, despite study after study after study after study after study after study after study after study* showing that there is no connection between MMR and autism.
The pseudoscience community’s desperate investment in this myth–and the shaky ground they stand on– is illustrated by how quickly they shift their stories:
“Thimerosol or aluminum, or some kind of ‘toxin’ is the cause!”Debunked .
“No, I mean, it’s just too many too soon!”Debunked
“No, but seriously, natural infection is way better because unvaccinated children are healthier than vaccinated children!”Debunked.
And just yesterday, another study (Jain et al. 2015 Autism occurrence by MMR vaccination status among US children with older siblings with and without autism) has come out debunking yet another antivaccine myth: that the MMR vaccine somehow “triggers” autism in children who are genetically susceptible to it.
“Nothing sells unproven “treatments” like testimonials. For autism it has been true since the days of chelation and even before that. Tell people that your “treatment” cures autism and you have testimonials to show it and you can just about guarantee sales.”
As we all know, anecdotes aren’t scientific evidence, but they do appeal to us on an emotional level. Unfortunately, one woman’s recent experience has starkly illustrated just how untrustworthy such stories actually are.
Camile Saulnier (a pseudonym) was recently given a book by Kerri Rivera called “Healing the Symptoms known as Autism”, which prescribed a “Treatment” for curing autism:
“I began looking into the background of CD/MMS and I was extremely concerned to find that MMS (Sodium Chlorite + Citric Acid = Chlorine Dioxide) aka. ‘CD’ was and is being hailed and marketed as a cure for almost every ailment and disease known to mankind, this includes Cancer, Malaria, Aids and Ebola.
I found the man behind MMS to be one Jim Humble, the Arch-Bishop of a rather cult like church named the “Genesis II Church”. Suffice to say I was very worried indeed, I searched further and found that Kerri Rivera the author of the book “Healing the Symptoms known as Autism” is a Bishop within this church.
I voiced my concerns with my friend who was following the Protocol, but she seemed to be un-phased by my doubts. She directed me to the facebook group CDAutism, where she said I will find proof of the recovery stories and thousands of parents giving testimony to the marvelous gains achieved by using the CD Protocol.”
Saulnier was justifiably concerned and spent some time reading the group’s posts, learning that the linchpin of the group’s claims was the collection of testimonials of parents of “recovered” autistic children. Saulnier was skeptical about the reliability of these testimonials, as they were all posted by Kerri Rivera, and so devised a little test to see how Rivera determined what “recovery” was and whether it was the CD treatment that caused “recovery.”
“I had an idea to see for myself, I needed to be sure 100% that everything I was seeing and reading was real before I could even consider using this protocol. I am afraid my worst fears were not only imagined, they are real.
I made a recovery story for my child, based on so many others which I had read, I felt bad doing it as I do not like to pretend but it was for the sole purpose of finding a greater truth.”
Saulnier’s false testimonial was immediately and enthusiastically posted by Kerri Rivera on the group’s website, and the banner proclaiming the number of children “cured” of autism was promptly updated to reflect this false cure. You can read the details of Saulnier’s correspondance with Rivera here.
Now, I’m not at all comfortable with Saulnier’s approach. I don’t believe that it’s ethical to lie. But having said that, it is a fascinating glimpse into the credulity of this segment of the alt-med community. Can you imagine how this would have played out in the science-based medical community? What level of scrutiny would such a story have been subjected to by physicians and medical researchers before they accepted it as true?
Several readers of this blog are persons on the autism spectrum and have contributed their perspectives in discussions on vaccination and autism. I’d particularly love to hear their thoughts on this issue.
As we approach the end of what’s basically been “Vaccines Month” here on Violent Metaphors, I want to take a moment to sincerely thank all parents who have responsibly vaccinated their children. In particular, I want to acknowledge those parents who had concerns about vaccines, but took the time to educate themselves and trusted their brains instead of their fears. Not only are your children safer because of your decision, but you have also helped protect countless children (and adults) who you will never meet.
I also want to express my gratitude to everyone who has participated in the comments, and taken a moment to share these posts with others. You may have gotten into uncomfortable discussions because of it, but know that your collective efforts are far more meaningful than any single post we can write here. By taking a public stand against pseudoscience, you have given voice to the thoughts shared by the majority of people, who are far too often intimidated by the clamoring of the fearful minority.
This site has had quite a bit of traffic in the last month, and the ad revenue that such traffic has generated is therefore considerably greater. When that happens, I typically donate a chunk of the proceeds (above what is needed to run the site) to a charitable organization. Usually I give it to an animal rescue organization (a cause dear to my heart), but I thought that since the amount this time was likely to be more substantial, I’d ask you to vote on which charity you would like to support.
Here are the options that I’ve thought of (in no particular order). Please let me know your preference (as well as any concerns you might have about these particular charities) in the comments.
Last weekend I attended the Autism Trust’s Give Autism a Chance Summit. Billed as an “informative conference,” it actually felt like a Two Minutes Hate about the evils of science and medicine. Speakers harangued the audience about the evils of vaccination–including a bizarre show trial–and pushed snake oil on desperate parents. Some of the speakers touted services based on absurd, unproven theories; others lied shamelessly to the attendees. Although there were some positive messages on display, the conference focused on sowing fear and using it to move product.
Orac is reporting that a planned Congressional hearing into the National Vaccine Injury Compensation Program has been canceled. This is unambiguously good news; the hearing was probably a political favor being done for anti-vaccine cranks who despise the NVICP. Their hatred for the Program can be confusing, given how much better it is for their position than the alternative.
This article by Natural News was brought to my attention a few weeks ago. The author (and founder of NN), Mike Adams claims:
“…the group that organizes so-called “TED talks” has been thoroughly hijacked by corporate junk science and now openly rejects any talks about GMOs, food as medicine, or even the subject of how food can help prevent behavioral disorders in children. All these areas of discussion are now red-flagged from being presented on any TED stage. This is openly admitted by TEDx itself in a little-known letter publicly published on December 7, 2012.”
“A cousin of my mom’s survived Polio and lived the rest of his life with its effects. He was not expected to live past his teens but made it to his 40s. I am grateful that modern science can protect us from Polio and other diseases and I choose to take advantage of modern science to give my kid better odds of not dying from a preventable disease. I had heard a lot of noise from people claiming vaccines caused Autism, but never saw any clear evidence. It just seemed to me like people really wanted to point to something as the cause and they latched onto vaccines.”–Jennifer
“(I got my children vaccinated) because the science supports it and I don’t want my kids to die. And civic reasons. It’s so straightforward.”–Britta
Whatever the reason, this week I’ve been in many conversations with individuals staunchly against vaccinations, parents who are very upset at the idea of unvaccinated children putting their own kids at risk, and parents who are confused and worried and want to know how to make the best decision possible for their children’s safety. I’m writing this for the third group of parents. Continue reading →
The good news is that thanks to excellent public health outreach in England, vaccination rates are improving significantly. But I worry that many people still don’t understand the issues. Let me summarize them for you: Continue reading →