I just read Rahul K. Parikh's article The Ugliness of the Anti-Vaccine Movement and, of course, I had to send him an email.
Dear Dr. Parikh,
I just read your article and while I do not doubt that Amy Wallace was called inappropriate and vicious names, I find your position disingenuous. I assure you that people in the "anti-vaccine movement" have been called by vicious names as well. The ugliness that you refer to attaches to almost everyone -- governmental agencies, doctors, journalists and parents. Most people I've talked to and read who have concerns about vaccines take pains to state that they are not anti-vaccine but pro-safe vaccines. But I understand. If we are labeled "vaccine rejectionists" who believe in "junk science" and use "fear-mongering rhetoric" it's easier to marginalize, mock and ignore us.
I had two boys become autistic two weeks after routine vaccinations -- one at 13 months, the younger at 17 months. The same professional who told me Jacob was on the spectrum said that I didn't need to worry about William, he was fine. This was less than two months before he regressed into autism. Since that time I've spent thousand of hours reading studies, abstracts, and basically anything I can get my hands on about vaccines. And I am not unique!
We know too much about this topic to be patted on the head and sent away. It's frustrating to read articles written by journalists who clearly know little about their topic, and then they call us fools and parasites. It's unbelievable to read that Paul Offit is considered an expert on the causation of autism. These things are asserted in print as gospel truth and unassailable. And those of us who have delved into the subject call out ... but we are marginalized and mocked.
Are you elevating the discussion?
Update:
I was surprised to find myself listed as an "anti-vaccine writer" on a website with a link to this entry. So, I addressed that here.
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25 comments:
Pretty Girl will KICK HIS BUTT!
He hasn't responded back to me (yet). But I predict one of two reactions, either he will be angry and ignore me or he'll pause for a moment of honest reflection. I'm hoping for the reflection!
I wrote to another doctor about a different article earlier this year and we had a nice back and forth email exchange. So, I have no desire for anything but Dr. Parikh to examine his own "glass house" before he starts throwing rocks!
Hey Marjorie! My Mom told me about your blog and I love it.If you don't mind I would love to add you to my blog, also if you need anything we are just down the road!
"Since that time I've spent thousand of hours reading studies, abstracts, and basically anything I can get my hands on about vaccines."
Then, having read all of that, you know that vaccines have no connection with autism.
"We know too much about this topic to be patted on the head and sent away."
If you are claiming a connection between autism and vaccines, then you don't "know too much", you know very little.
When you argue that you are not 'anti-vaccine' but 'pro-safe vaccines', you are positing that the current vaccines are *not* safe: evidence, please?
Current vaccines are as safe as we can make them, given our current levels of technology. To posit that current vaccines are 'not safe' is to be anti-vaccine.
To argue still that we should improve our current tech, to make our vaccines 'more safe' is to claim (again) that there is a reasonable danger with our current vaccines: evidence, please?
I've never argued that I wasn't "anti-vaccine" because I didn't realize I'd ever be classified that way. Anti actually means to be opposed to something. It's not logical to equate advocating for safer vaccines with being opposed to them. That's an argument meant to divert attention away from the real issue.
And on a personal note my daughter just received a vaccine in October.
Reasonable danger ... ok. Here's one
Association between type 1 diabetes and Hib vaccine
Causal relation is likely
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1116914/
Quote: "The rise in diabetes, just one potential adverse effect, exceeds the benefit of the vaccine, which has been estimated to prevent seven deaths and 7-26 cases of severe disability per 100 000 children immunised.2"
Juvenile Diabetes will eventually cause death.
Another: Side effects of Chickenpox vaccine
http://www.prweb.com/releases/2003/10/prweb83848.htm
"Results of the study suggest mass vaccination with varicella (chickenpox) vaccine may be responsible for this adverse effect. Complications from shingles, which is caused by the reactivation of the chickenpox virus that lies dormant in the body, result in about three times the number of hospitalizations and five times the number of deaths as those from chickenpox disease itself. Shingles, usually mild in children, can be severe in adults."
Another: Incidence of pneumonia is not reduced by pneumococcal conjugate vaccine. WHO
http://www.who.int/bulletin/volumes/86/08-054692.pdf
Another: Delaying Vaccines lesson Risks of Asthma
http://umanitoba.ca/faculties/medicine/units/immunology/News/WFP%20Asthma%20and%20vaccines%20Jan%202008.pdf
Blood Levels of Mercury Are Related to Diagnosis of Autism: A Reanalysis of an Important Data Set
http://jcn.sagepub.com/cgi/content/abstract/22/11/1308
There is plenty of information out there.
I'll get to the rest later, as it's fairly late in the evening, but the issue with the diabetes/Hib vaccine is not as cut and dried as your selective quoting makes out.
If you read the actual abstract of the paper (rather than simply the editors' comments on it), you'll find the following: "No statistically significant difference was found at any time during the 10 year follow up in the risk of type 1 diabetes between the children born before the vaccination period and those vaccinated at the age of 24 months only (relative risk 1.01)."
The criticisms of the editors appears to be answered in the paper itself (disclaimer: I am not a scientist of any sort, nevermind specifically an MD).
Interestingly enough, if you read through the paper itself (it's only 5 pages long, and fairly low on terminology) you might notice something odd:
Editor 1 says:
"The cumulative incidence of diabetes per 100 000 in the three groups receiving four, one, and no doses of the vaccine was 261, 237, and 207 at age 7 and 398, 376, and 340 at age 10 respectively."
Those numbers, I can't find in the paper.
I tend to be wary when:
The person doing the research says "there is no causal link";
A different person says "the researcher is wrong!";
And said different person is giving numbers that are not in the paper, but claims that they are.
Strikes me as weird. I'll run this paper past an MD buddy of mine to see what he thinks.
I tend to fall for this all the time. I answer what I think your question is rather than what you really want answered. You seem smart. I’m sure you know that the government concedes vaccines cause harm. There is a disclaimer on the vaccine information sheet they pass out to parents. The National Vaccine Injury Compensation Program was set up to decrease lawsuits against pharmaceutical companies. VAERS was setup to tract vaccine reactions though they’re admittedly woefully under reported.
Perhaps you didn’t read in my email that I rejected the tone and the paternalism in Dr. Parikh’s article. You have adopted the same. After reflection, I’m convinced you only want a fight. I don’t have that kind of blog. I try not to call people names or say things like “you know very little” because that distracts from the argument. Shouldn’t the main emphasis be on the disputed facts in question?
I’m making the assumption, and I apologize if I’m wrong, that you have irrevocably made up your mind about what is correct. There are plenty of people on the internet that will give you the argument, in the tone, which you seem to want. I don’t have the time or inclination to devote the energy to this argument that I think it would require. I suggest you look here for that kind of argument.
http://www.fourteenstudies.org/index.html
I haven't "irrevocably" made up my mind.
But yes, I have formed an opinion on the topic. I've read the literature, I've read several studies, and I've spent time learning how to read studies (and not just the commentary on the studies).
All of that has led me to the conclusion that a) vaccines are doing what they claim that they are doing and b) people are over-hyping the problems with vaccines.
Here is a case in point: I point out the issues with that paper, and you declare that my tone is unacceptable, and that I'm only looking for a fight.
Shall I play the mind-reading game too, and claim that "you have irrevocably made up your mind"?
My buddy the MD points out the following about that particular study linking a vaccine to diabetes:
1) That paper is 10 years old now. Not bad in itself, but any paper that old should trigger a search for more recent literature.
2) The guy criticizing the Hib vaccine is the owner of a company that, at the time, was developing an alternative vaccine, so he had a direct conflict of interest
3) In 2001, a paper with superior methodology was published by FDA scientists which refuted the link and suggested (though without statistical significance, but I'm just guessing here, because I only have the abstract) that actually, immunized kids may have had a slightly decreased risk of diabetes.
http://tinyurl.com/yck7uhd (it's a link to pubmed, but the original link is 201 characters...)
If you are genuinely seeking out information on this topic, then you'll seek out the people who disagree with you. Living in an echo chamber is what you do when you have simply decided that you are correct, and your existing knowledge is tenuous. I'm responding to this blog because (apparently mistakenly) I thought you might have something solid to say.
Instead, you link to JB Hanley/Generation Rescue. /sadface
They are wrong on pretty much every level. If you're serious about reading this kind of stuff, I strongly recommend you take a look at your local uni's course list. A lot of them teach "Introduction to Scientific Reasoning" as a 1st year Philosophy course, and that kind of course will give you a lot of the basics on how to read studies, and some basic statistical knowledge (it's *really* basic, but it's a good way to gauge papers). Alternatively, Understanding Scientific Reasoning by Giere, Bickle and Mauldin is very readable (http://tinyurl.com/ygsc353 links to amazon).
I appreciate your advice. I discuss vaccine studies and possible triggers of autism with my husband, his undergrad degree is in Chemistry. He spent five years as a formulations chemist; so, he can evaluate scientific studies.
At this point, I'm sort of kicking myself that I haven't kept a file on studies etc. that I could logically lay out for you. I've been reading about this for years and I don't necessarily remember everything. Thus, I find myself searching online for an answer to your question and what I've found probably isn't even the best evidence.
I believe that my sons have a genetic susceptibility or predisposition to developing autism and that vaccines among other triggering factors -- overuse of antibiotics, inability to digest heavy metal, allergies, gastrointestinal issues, family history of autoimmune disease, toxins in the environment, mitochondrial disorder, etc.
A lot of current research is pointing towards autism being an autoimmune disease. I believe that for people with a genetic susceptibility or with immune problems vaccines are damaging. The risks of vaccination are not equal among all children, or for that matter adults.
Bernadine Healy the former head of the NIH has publicly stated peer-reviewed scientific studies support the idea of an association between vaccines and autism.
http://www.cbsnews.com/blogs/2008/05/12/couricandco/entry4090144.shtml
I advise you look into Dr. Martha Herbert's work. http://www.marthaherbert.com/biography1.html
She's doing some very interesting work and often gives lectures.
And I recommend the Autism Schafer Report. http://www.sarnet.org/
Lennie Schafer has been collecting information from news reports, studies, etc. for years. The archives are full of information.
You could look into Richard Deth's research http://www.drneubrander.com/Files/Deth%20Testimony.pdf
The big problem that we face is that good studies "exonerating" vaccines haven't been done yet. Hopefully they will in the next ten years.
"The big problem that we face is that good studies "exonerating" vaccines haven't been done yet."
No, that doesn't fly.
If I decide to start writing about how carrots cause HIV, the onus is not on the carrot-producers to "exonerate" carrots.
Even if I claim that there is a correlation between carrot-eating and HIV, and then (know as the Ad Hoc fallacy) change my argument to "well, some people have a genetic predisposition to HIV that is *only* triggered when they eat carrots", the onus is still not on the carrot-producers to "exonerate" carrots.
The onus is on me to demonstrate a causal link.
Not to demonstrate that the *idea* of a causal link is *possible*. To actually do some science, and show that there is a causal link between carrots and HIV.
A link between carrots and HIV sounds ridiculous, right?
There is an equal amount of evidence supporting that claim as there is for the link between vaccines and Autism.
To claim that vaccines now need to be "exonerated" (ie proven to be safe, or not a cause) is to make the mistake of not analysing the claims of Generation Rescue and their ilk.
The CBS article claims that Healy "found credible published, peer-reviewed scientific studies that support the idea of an association": what are these studies? Where do I find them? I want to read them so that I, too, may be convinced.
But again, much like the British Medical Journal reference above, this is just someone talking. It's not a study, nor data in support of the conclusion that "vaccines are harmful". There's nothing here to exonerate vaccines of, so to speak.
"The government concedes vaccines cause harm" bears comment here too: that's not true.
The American government has chosen not to contest certain claims of harm that citizens bring against them regarding certain vaccines. This is not an American issue, this a world-wide issue. What one (or even all) government chooses to do doesn't prove the case either way.
One of the duties of a government is to protect it's citizenry. I think that the US government is to be applauded for erring on the side of helping it's citizenry, rather than the position of 'screw'em, there isn't enough data to support their claim'. In my opinion, this is an entirely utilitarian move on the basis that the legal costs of fighting these claims is money (essentially) set on fire, and it costs less to simply compensate the parents. If you, personally, had to take the case to court, you wouldn't be able to prove your side and you'd be endlessly caught up in the legal machinations, significantly lowering your quality of life. I'm surprised (happily so) by the US Government's position on this, as their typical move is to screw their citizens as much as possible to the benefit of the various corporate interests.
Regardless of all that, I'm curious on a certain point:
Regarding Association between type 1 diabetes and Hib vaccine
Causal relation is likely
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1116914/
Quote: "The rise in diabetes, just one potential adverse effect, exceeds the benefit of the vaccine, which has been estimated to prevent seven deaths and 7-26 cases of severe disability per 100 000 children immunised.2"
Given the problems I've pointed out with the review of that paper (the reviewer's numbers not matching the numbers in the study; the reviewer's conflict of interest; the newer, better study showing the opposite effect claimed by the review): do you intend to present that paper in the future as good evidence that there are safety concerns with vaccines?
One final point (and I shan't darken your doorstep again, unless asked to):
The '14 studies' website (http://www.fourteenstudies.org/index.html) is bad. Really, really bad.
For a comprehensive rebuttal, by a guy who isn't in the pocket of any pharmaceutical company, take a read of: http://www.sciencebasedmedicine.org/?p=466
You say that "people in the "anti-vaccine movement" have been called by vicious names as well"
but have any well known pro-vaccination advocates written any articles originally titled
"[Female anti-vaccinationist] is raped (intellectually) by Andrew Wakefield"?
Sure every side gets the trolls attacking them obscenely, but what on earth could justify a proper article written with such misogyny.
Interesting how the 'Fourteen Studies' link lists Amanda Peet as a 'Spokesperson for Sanofi Aventis'.
Oh yeah...
http://content.nejm.org/cgi/content/abstract/350/14/1398
My apologies for the double post, but it seems that the American Diabetes Association is also in the pocket of the Big Pharma vaccino-kidstabby industrial complex:
http://care.diabetesjournals.org/content/28/1/186.full
Brian -- this was getting long so I posted my response as a new entry. (I didn't post anything today and my dad calls me if if go too long without something for him to read.) You are welcome to post anything that you want. I just hate the tone from both sides. Name calling, and even my smugness distracts from what's really important.
Ender -- no I've never read a title like that. I can't and won't defend that! It's wrong to say something like that.
6p01156f2a1683970c --I'm not sure if you want an explanation but I think the reason that the 'Fourteen Studies' link lists Amanda Peet as a 'Spokesperson for Sanofi Aventis' is because Wyeth gave Every Child By Two "68% of their non-contract revenue and 48% of their total revenue" in 2006. And Amanda Peet is the spokesperson for ECBT. And the companies have merged.
http://www.ageofautism.com/2008/08/every-child-by.html
Does Brian have any children? Does he have a horse in this race? What is his connection to autism or vaccines or anything else going on in the U.S.? Why does he care what Marjorie has to say?
Marcy
Marcy: No, I don't have any children.
Yes, I do have a "horse in this race": I have a stake in society. I don't want there to be piles of dead children because people made foolish decisions based on lies, deceit, fraud and ignorance. I want people making intelligent, rational, and informed decisions about their lives, and the lives of their family.
I care what Marjorie has to say because she has entered the conversation, and this conversation is not solely concerned with the US. That would be a myopic view.
I care because people who are uninformed will read the posts here, and will (naturally) identify with her position (parents with kids). As such, many of them will (as many have in other places) simply identify with the person and adopt their beliefs without critically evaluating the (blatantly false) information that is put forward (such as the 14studies site).
I care because I'm not so myopic to focus on those who are within immediate blood-relation to me, or within some arbitrary geographic demarcation, but because I'm concerned about the species.
But please, feel free to indirectly Ad Hominem (http://en.wikipedia.org/wiki/Ad_Hominem) me out of the conversation.
Continued at http://lifeasthemotherof4.blogspot.com/2009/11/comments-about-my-email.html
By now, you have had adequate time to realize that AoA's Handley used that title and then changed it to something only slightly less offensive (although since you use the cool aid reference....).
Since your blog on civility was run at AoA under "The Names People Play," it really looks like you do actually support the lack of civility or you would have gotten nowhere near AoA. I've also read several of your blog posts now, and while I think it likely that you are a lovely woman and a caring, warm parent, your hours of study have been spent on reading research by charlatans and wackaloons.
As a matter of full disclosure, I blogged about your piece at AoA yesterday on my blog. In that piece, I argue that if you don't want the anti-vaccine label, then you cannot wrap yourself in the cloak of the anti-vaccine whale.to crowd. You lose credibility. If your position is reasonable, then use reliable scientific information.
Autism is not an auto-immune disorder. Evidence does not support that. The wooquacks trying to sell products are promoting that. Completely different.
Thank you for your kind words but I'm far too opinionated and not demure enough to be called "lovely" but I'll happily take the caring parent. My point in the Age of Autism piece was to point out the unreasonableness of the "anti-safe vaccine" group (that was tongue in cheek because I think you can get the humor) being offended by the "wackaloons" calling them names. It's kind of like the kid that runs to his mommy complaining that Bobby hit him back. I'm disappointed that I wasn't clear enough.
I've thought about labels a lot since being tagged with one and so I wrote about that (coming up soon). Quite frankly, you don't get to label me anti-vaccine any more than I get to label you. If I let you label me anything at all it would be "wackaloon" because that would make me laugh every time I read it.
:-) A woman after my own heart, at least on the names and labels bit; I keep a collection of the ones I've been called on the right side of my blog and laugh delightedly with each new one I get to add. It's a healthy and smart way to deal with it. I won't call you a wackaloon, though. Seen too many of them at AoA.
Fair enough; the anti-vaccine label may not be appropriate for YOU, and that's certainly part of my point (and one I've spent a great deal of time at my blog trying to make: there are reasonable people who are advocating for the safest vaccines we can make, for vulnerable populations to be identified who would be more likely to suffer an adverse effect. The problem becomes that when you are in the midst of wackaloons, it's easy to get mistaken for one. :-)
I've friends, Louise and Thelma at www.evendumbasseshavefeelings.blogspot.com, who are in no way demure, but who are lovely women. Women who stand their ground and speak their mind are lovely.
I hope you'll look at the Countering piece and offer any clarification or counterpoints, if you feel I misrepresented anything. You are right, civil discourse ought to be possible, and I try to offer that ability at Countering (not something that happens at AoA, where they moderate so tightly it honestly appears they let one dissenting opinion on so that everyone can feed on them).
Here's to civil dialogue. :-)
Kim,
I will never call you a name unless I think of one to equal wackaloon. (But don't hold your breath as I'm not that creative.) I did read your post and I'm not going to comment because I don't think it will add anything. I guess I foolishly did believe that the "rational bloggers" were trying to win us over but since I've rarely read those blogs I'll defer to your experience. I wish you the best and perhaps I'd better forewarn you that AoA is probably going to print something else from me about labels. And in your response to it I grant you the privilege of calling me a wackaloo one time. ;-)
:-) I think that rational bloggers are trying to reach those they can, but that they have accepted, having dealt with the controversy, for example, like Orac for 12 years, that they can't reach those who are adamant in their positions. I don't think that everyone who reads (gah, because I obviously read AoA!) AoA is a wackaloon. I don't. I don't even think that everyone who thinks their child's autism was caused by an adverse event from a vaccine is a wackaloon.
I think that parents are desperate for answers that provide certaintly and clear fixes. I think that the mainstream doesn't offer that for autism (or for many conditions). AoA, the yahoo support groups supporting the vaccine route, and the like give parents a laundry list of things to try and the promise of recovery. And they give them a place to feed the anger.
I'm still not willing to give you the wackaloon label. :-)
I'm not desperate for answers for myself. I'm done having children. And it's years in the future before my kids start having kids. But I really care about your kids if they're in the future and I really care about other families and I really worry about the future of William and kids like him. I'd love it if it could stop with me! It kills me when I read the statistics because I understand what that means for a family.
We've followed the DAN protocol it's made a huge difference with Will. He started ABA before he was 2. He had 26 hours a week for 9 months without progress he couldn't maintain any skills. He was basically at the cognitive level of a 9 month-old. 2 months after beginning the gluten and casein free diet he was a completely different child. He was available to learn and he started to. He had three ABA therapists, an early childhood educator, & a SLP all five of them attributed the change to the diet. In fact, the BCBA still uses Will as an example to other professionals that the diet isn't crazy.
I wasn't open to alternative medicine at all before this and we sceptically tried it. Now, when I hear something I think sounds "hoaky" I don't initially dismiss it.
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