There is so much to be pissed about when it comes to Wakefield: he was in a vaccine-injury lawyer's pocket when he conducted his original study. He had applied for a patent for a vaccine alternative to the MMR before he held the press conference that set off the vaccine/autism storm. His original study comprised only twelve children, few of whom actually met the criteria for the study. He continues to assert that his research is valid, even though 10 of his original co-authors and the journal in which his study was originally published issued formal retractions. And on. And on.
I summarized the matter for BlogHer, and included plenty of links if you'd like to spend your entire day riding an outrage-fueled adrenaline rush. Excerpt:
Have you ever wondered why, exactly, vaccines are erroneously associated with autism? I'll tell you: In 1998, Dr. Andrew Wakefield held a press conference to announce that his research had revealed a possible link between the MMR vaccine and autism. He published his findings in the respected independent medical journal The Lancet, and spent the next few years promoting his vaccine-autism "concerns" through media outlets like the TV news magazine 60 Minutes.The facts, the deception, the denialist mercenary mindset, the damage to public health, are bad enough -- but Wakefield's actions cause additional damages. As my favorite scientist Emily so eloquently wrote:
The result was panic, a vaccination rates nosedive, and the resurrection of vaccine-preventable diseases like measles.
In 2004, it was revealed that Wakefield had also been conducting a separate, simultaneous study funded by lawyers seeking compensation for clients who claimed their children suffered from vaccine damage. Ten of Wakefield's twelve original paper co-authors, horrified by Wakefield's conflict of interest as well as the public health crisis they'd help cause, issued an official retraction in The Lancet [PDF], stating, "We wish to make it clear that in [Wakefield's] paper no causal link was established between MMR vaccine and autism as the data were insufficient."
Why do I care so much? Oh, it's not just because this hack job of science ended up in so much wasted time, money, energy, emotion, and lives. It's also because in science, we've got ethics. We're supposed to, anyway. We have standards. We've got these rules, you see, about "research involving human subjects." They're designed to keep the more nefarious among us from taking advantage of vulnerable populations, to keep them from exploiting people who are least able to defend themselves because of false hope, scientific ignorance, desperation, or incapacity.Iz and I recently watched the movie Contact, in which Jodie Foster plays Ellie Arroway, an astronomer whose principles never waver, not even when doing so would let her fulfill a lifelong dream of extraterrestrial contact. My daughter's face remained naked with awe during Dr. Arroway's hearings, as it dawned on her that devotion to science means devotion to courage. It's a lesson that Dr. Wakefield could stand to learn.
And when a researcher, scientist, doctor violates those rules, steps outside of those bounds, acts dishonestly, doesn't act in the best interests of the children involved, they're joining ranks with the big cheaters of science. With the big selfish bastards of science who are in it only for themselves, the research "subjects" be damned. The ones who will, without compunction, do things that harm just so they can do themselves good.
The bitterness you spew is clearly ugly. I'll take my recovered over yours any day. Glad I never listened to parents like you when my child was diagnosed. Biomed has helped tremendously.ReplyDelete
Not quite sure how your comments suit this post. If you have done a thorough and methodical job of determining the best approach to supporting your child (http://www.blogher.com/identifying-and-avoiding-autism-cults), then you have every right to be proud and happy.ReplyDelete
The question is why, then, having achieved your goals, would you feel the need to brag about your "recovered" child and compare them to my dearly loved though still very challenged son? Only logical conclusion: your bitterness remarks, those would be projection.
I hope you eventually find a community that, like mine, helps you find solace in hope, humor, comraderie, affection, and love for our children no matter what label anyone chooses to give them.
Hi- I am a regular reader of your blog. Mali and my daughter, same age, have the same birthday! Anyway...ReplyDelete
I've never understood your fury about these treatments. Had I also listened to docs, my gal as well may well have not recovered.
I'm sorry it didn't work for your son, but don't outright deny the Kennedy article on the autism connection as well as that alternative treatments can work for some kids.
If I too had listened to posters like you we would not be where we are today. Please be mindful of those still in the process.
Thank you for reading, and I'm glad your daughter is doing well, but, as with the first and much less gracious anonymous commenter, your comments are not relevant to this post. I mentioned neither biomed nor the Kennedy article.ReplyDelete
However, if you read my Autism Cults article (linked above), in which I do address biomed, you'll see that my anger is reserved for those who, like our former Dan doctor, advocate biomed practices when evidence does not support them.
Thank you, Squid, for this great post. I am a fellow autism mom, with 1 child with ASD and one child who is borderline Aspergers. I just found your blog and I have added it to my blogroll.ReplyDelete
I cannot believe, after all the discreditation (is that a word?) that Dr. Wakefield still continues to believe his research is valid. It boggles the mind...true arrogance.
Thank you so much for this! I have a hard time understanding why people who have so much skepticism for science/mainstream medicine will swallow alternative approaches without reservation. Skepticism is a GREAT trait - just apply it equally, people!ReplyDelete
I agree with the first two Anons. Trust me, if special diets and biomed, which you obviously tried early on, had worked for your son you would be singing a different tune. Your son remains severe and so you feel no one should benefit. You are clearly an angry mother. Can't wait to read this blog when your son is 25 years old, massive and no one is there to care.ReplyDelete
I will always care. :)ReplyDelete
Thanks for the on-topic & kind comments.ReplyDelete
Off-topic anonymous biomed fans, try actually reading my post. Particularly the concluding line about courage.
Squid, you're many things, but you don't distill into "angry mom." You're a woman of many nuanced ideas and a clear, strong core of rationality. It's a hoot, though, to see some from the angry hordes point the accusatory angry finger at you, of all things.ReplyDelete
And thanks for that quote. I have to confess, I'm angry, but it isn't about autism. Mine runs more toward a Spock-like exasperation with irrationality.
For those who can't read and need a summary: This post isn't about biomed. It's about an extended pattern of ethics violations on the part of one man and the damaging aftermath. And it's about how important it is to have the courage to be brutally honest at all times in the practice of science because dishonesty in science and medicine costs lives.
And this is what I just don't get. Bad science is bad science. We try plenty of alternative stuff for my kid (I kind of keep a mental, emotional, and a real $ budget for that purpose), but there is a way to do things. Emotion, hysteria, hate (against other mothers, no less!), and so forth just don't have a place here. I went through years of infertility and am very familiar with quack movements, as well as preying on people who are in bad circumstances.ReplyDelete
For the really nasty posters out there who say that this is a bitter statement and make disparaging remarks about "nobody loving Squid's kid"... what culture are you in?
The fact is that, for all of us, there are peer reviews of science and there are established panels, both professional and academic. This is HOW SCIENCE WORKS. Science doesn't work like politics. Although there are fads, science tries very hard to measure things, create hypotheses, test theories, and then submit work to peer review. Your EMOTIONS don't really belong here.
It is significant that this Wakefield fellow got sanctioned. Deal with it.
And furthermore, you are welcome to choose whatever mega-alternative method you want for your kid - but can you possibly start being civilized and remove the hatefulness from your attitude? The fact is that, for every mother who does not choose to follow the "yeast diet" for their kid (for example), there are other mothers whose children are being exposed to extremely harmful childhood diseases that were supposed to be stomped out by vaccines. And your anger because someone's child may have a yeast strain that isn't being followed up on seems pretty damn stupid next to the possibility that we'll have to bring back iron lungs.
Anonymous #1 -- as it happens, I know Squid & Leelo in real life. She is not bitter, and loves her lively, funny, charming boy dearly -- challenges and all.ReplyDelete
Anonymous #2 -- autism is a developmental delay, not stasis. Sometimes children make huge leaps in ability, but we don't know why.
It is almost certainly not supplements or HBOT or chelation.
If by "Kennedy article" you mean Deadly Immunity his lies, distortions and misstatements have been debunked since that issue of Rolling Stone (a noted research journal) hit the stands.
Anonymous #3 -- it is you who are bitter. "No one there to care"? Not one person in Leelo's large and loving circle of friends?
I'd like to direct your attention to another tough-minded woman who loves her children with autism: KWombles Not Wanting Bunk Treatments is NOT the Same As Not Wanting Treatment.
Anon 2 here-ReplyDelete
Respectfully, I'm sorry you can't see past the "debunking". Without getting bombastically conspiratorial, could there not be a lack of ethics and, uh, profits to be made from the traditional Western approach?
Look up the hx of the 1st HiB vaccine (long term approved) or say Vioxx, et al and then really tell me that science is foolproof.
In theory, yes. However, things are being rushed to market. The PTB can't really, objectively examine autism bc it could roil the US economy and whatever hopes in government are left if vaccines are involved.
Funny "coincidence". The leftover thimerisol shots from MMR are sent to China. Their sudden skyrocketing autism rates? Must be a change in reporting ;-)
I don't want to hijack this lady's blog. I do think that blasting this doc is not courage, though. She is just as strident as those weirdo hippies. He could have easily done something wrong and be right. Further, don't kill hope and the "courage" in new parents to try new approaches, These things WORKED for us.
Without going into detail, through these treatments I frequently met and saw the changes in Jenny McCarthy's son (seriously). So I can say that from how he was to where he went worked as well. She is not lying.
(Personal opinion, vaccine trigger, the ones who do alternative improve, those who don't ALSO had a genetic component added to the mix, making it more difficult or maybe incurable).
Further, many "alternative" treatments eventually become part of the mainstream fold!
I, for one, am bitter. Not at parents like some of the above posters who try treatments I may not agree with on their kids, but I sure as hell am angry at people like the actual subject of this post, Andrew Wakefield, who have very directly and indirectly harmed children and others he, as a physician, was duty-bound to protect. "Primum non nocere"--a basic ethical precept that Wakefield clearly forgot. Perhaps he had good intentions; perhaps not. If his intentions started out good, it is clear that he abandoned them once he got far enough down the road, first for $$, then for fame, which he clearly relishes. There is nothing quite so dangerous as believing one's own publicity.ReplyDelete
Whether or not you believe vaccines are a cause of autism, or certain unproven treatments can help children with autism,you should be very angry with Dr. Wakefield. With his dubious ethical practices and bad (possibly fraudulent) science, he set back actual autism science--including vaccine-related investigations--years and ensured that parents for a generation to come would be frightened to vaccinate their kids. What that means, to all you who believe that vaccines harmed one or more of your children, is that any of your children who are not fully vaccinated now run a greater risk of catching measles, mumps or rubella--and other VPDs. What that means is that infants, like Dana McCaffrey, will die because other parents are scared to vaccinate. What that means is that children with real, serious immune problems, or in treatment for cancer, and cannot receive vaccines run an increased risk.
Dr. Wakefield's work has done NOTHING for children, with or without autism. It has yielded no clues into causation--in fact, has sent us down the wrong path--it has yielded no treatments.
So yes, I am bitter--I am hopping mad, for my own son, for Leelo, for all those kids who have not benefitted from the research that has not been done, and will not be done, because we keep chasing the unicorn of vaccine-related autism; I am even madder for the children who will die or suffer because of waning vaccination levels.
Oh, yes. I am bitter.
Anon 2, you and the other posters insist on raising straw men here instead of directly addressing the point of this post--a doctor and researcher violated ethical standards and requirements, not once, but several times. That's it. That's the story. E-T-H-I-C-S V-I-O-L-A-T-I-O-N-S.ReplyDelete
This isn't about alternative medicine vs. Western medicine (unless you've just decided that spinal taps are alternative). It's about Andrew Wakefield, a western medical practitioner and researcher who has been shown to have violated ethics in numerous ways on several occasions. That's it. All this bloviating about biomed and etc. doesn't make that go away or change it.
Then this is a dichotomous standstill. You think he has sent things back by diverting autism research and I think he has saved many, many children from getting autism.ReplyDelete
Anyway, I said I would not hijack this lady's blog and I meant it. So, bloviator out!
No, it's not a standstill. I'm not talking about "diverting autism research" and haven't said a word about that here, so thanks for introducing yet another straw man. That may work on two-year-olds, but I'm 42 and have outgrown the tactic.ReplyDelete
He's been found to have committed serious and multiple ethical violations in the conduct of scientific and medical research. Serious serious stuff. It's not a matter of opinion, of "I believe" vs. "you believe." It's not dichotomous. It's a fact.
Oh my gosh. It was the lady posting before you. Your behavior is kind of feeding into the other anons' points. Whether or not he violated, he still (IMO, only IMO) was right! It is as if you are looking for the straw man to vent your own anger on. I think that's what they were getting at, too.ReplyDelete
Don't want to troll it out. I'll let you get the last word bc you are so hopping mad over people trying to fool you and all....
I actually found your blog through BlogHer... After I read this entry you just posted, I had to read more.ReplyDelete
This is a refreshing change from other Mommy Autism blogs... It seems like a lot of moms of kids with autism are desperate for someone to blame, keen to latch onto whatever conspiracy tarts like Jenny McCarthy can whip up. It's a dangerous game.
Kudos to you for bridging education and personal experience.
OK, Anon #2 (would it hurt to leave a name, even a pseudonym?)ReplyDelete
1. I think there's a possible difference in life history. I was born in the early 1950s -- before the development of vaccines for polio, measles, mumps, rubella and the rest of the diseases on the recommended list. I have a clear memory of the misery of having mumps, in particular. Some autism parents worry about "regression" following innoculation. Well, relative to myself: I had been fully toilet trained for at least 5 years when I contracted mumps. During my bout with mumps, I had episodes of both urinary and fecal incontinence...because I was too weak or too addled by fever to get to the toilet. Children
2. You wrote "could there not be a lack of ethics and, uh, profits to be made from the traditional Western approach?"
a) the "traditional Western approach" is called medicine. When complimenatry or alternative medical (CAM) approaches are found to be safe and effecitive, they cease to be CAM and become medicine.
b) Yes, there are ethical lapses and profits in medicine. This neither casts all of science-based medicine into disrepute, nor validates non-science-based medicine.
The argument isn't that "science is foolproof". It isn't. What it is is self-correcting, both in the long run.
4. You wrote "In theory, yes. However, things are being rushed to market. The PTB can't really, objectively examine autism bc it could roil the US economy and whatever hopes in government are left if vaccines are involved."
a) You wrote, "However, things are being rushed to market." I am not sure what you mean by that. What is being rushed to market? If you mean the H1N1 vaccine? As has been discussed extensively elsewhere, the H1N1 vaccine is merely a variant of the annual flu vaccine, the manufacturing and safety of which is well-understood
b) to unpack: PTB probably stands for "Powers That Be"
c) "really, objectively examine autism bc it could roil the US economy and whatever hopes in government are left if vaccines are involved."" This is just silly. The National Childhood Vaccine Injury Act of 1986 (Public Law 99-660) created the National Vaccine Injury Compensation Program (VICP). Yes, there are rare cases of vaccine injury, which is what the VICP was set upt to compensate. The allegation that autism = vaccine injury has been heard, at length, in the VICP. The independent special masters have struck down all three causes. This post on the third cause Federal Claims Court Dismisses Third MMR-Autism Appeal would be a good place to start.
T. You wrote "Funny "coincidence". The leftover thimerisol shots from MMR are sent to China. Their sudden skyrocketing autism rates? Must be a change in reporting ;-)"
a) You are completely incorrect, in that the MMR vaccine never had thimerosal. OK, were any other "leftover" thimerosal-containing vaccines ever sent to China?
b) You are possibly incorrect re "leftover vaccines being sent to China". I can't find a source for that, perhaps you would be so good as to provide one.
Hi-don't want to agree or disagree with the subject here. I just want to say that from reading enough of Emily's rants here and elsewhere that she seems to have serious psychological issues. She certainly seems on the spectrum herself.ReplyDelete
I'd like to point out how thoroughly the anonymous commenters have proven my points from the original article on BlogHer:
"Wakefield continues to have staunch supporters despite the GMC's verdict, which is unsurprising to thinking members of the autism community. Wakefield has long been a darling to contrarian organizations like Age of Autism and Generation Rescue, who never stop confidently proclaiming that a horse is a cow, and encourage supporters to bully anyone who hears the animal neighing."
Dismissed. Please do the reading for Monday's session on ETHICS VIOLATIONS.
Some parents believe vaccines had serious side effects on their children and some don't. It's as simple as that. All humans are different biologically and can have different reactions to medications, vaccines and so forth so to keep arguing about this is pointless. Find a hobby. I think some people just like to bitch.ReplyDelete
All these different Anonymous posters are making me dizzy.ReplyDelete
Not an unfamiliar feeling for you I'm sure Liz.ReplyDelete
A new anon
I find it fascinating that commenters like this latest anon aren't latching onto my original BlogHer article, but not surprised because they would 1) have to register and shed their cloak of anonymity and 2) cannot abide by BlogHer's policy of civil disagreement.ReplyDelete
Save your personal attacks for the playground, kids. The adults aren't interested.
Squid...that'd mean that they'd have to read that part about courage...and understand it. Or even that part about E-T-H-I-C-S V-I-O-L-A-T-I-O-N-S.ReplyDelete
BlogHer hates me and won't let me post. Even if I take out the links, the comment 'triggers the spam filter'ReplyDelete
Here's what I wanted to say:
Elena, there's only one correct answer to some questions, such as "Is the Earth Flat?" or "Is the Earth the Center of the Universe?"
And there's only one correct side to the Wakefield story. He violated his oath as a doctor on numberous occasions. He lied about his motives and his source of funding. He endangered children.
As to the novel H1N1 "flopping". That's the pinch in public health. When you do it right, nothing happens. Still, in the U.S., 10,837 people died. And my blog-friend, Attila the Mom? Her son was hospitalized with H1N1, and was not expected to survive. After a 45 day hospitalization, he came home. But now at day 92, her son's still on oxygen.
And about the "more vaccinations". Yes, we are inoculating against more diseases, but the antigen load is smaller.
Thirty years ago, children received seven vaccines, which protected
against measles, mumps, rubella, diphtheria, tetanus, pertussis and
polio. The total number of bacterial and viral proteins contained in
these seven vaccines was a little more than 3,000.
Today, children receive 14 different vaccines, but the total number
of immunological components in these vaccines is only about 150.
This dramatic reduction is the result of scientific advances that have
allowed for purer, safer vaccines.
Are vaccines perfect? Not by a long shot. But they are safer than the diseases they prevent.
Here is what I object to about Wakefield (and Thoughtful House, Age of Autism, Generation Rescue, and even Autism Speaks). Their focus on "a cure for autism" sucks up the time and money that should be going to
* Increasing support for families who have one or more members with autism
* Increasing educational opportunities for people with autism -- safe, welcoming, and effective educational opportunities
* Increasing opportunities for dignified, meaningful employment for people with autism
* Increasing safe and dignified living arrangements for those with autism who cannot manage independent living.
Feel free to make my points for me.
I always think it's kind of interesting that I am willing to sign my name to my opinions and others are not.ReplyDelete
Even when I go to a site like Age of Autism I am willing to put my name to my words--even though they aren't willing to post my comments. Why is it that all the drive by haters here (and on my blog as well) aren't willing to engage with their whole identity?
Much easier to call Squid names, be way off topic, and make unfounded claims without being traceable?
Thank you for your article Squid. You are fair, focused and one of the least bitter women I know.
In fact, your love and support of all kids, rowdy, rescued, and recovered, precious, precocious, or poorly parented, is something I truly admire.
Today *Lancet* retracted the influential 1998 study showing a linkReplyDelete
between vaccinations and autism.
The retraction will appear in a future issue of the journal.
Here is the text of the retraction:
[begin *Lancet* retraction]
Retraction--Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and
pervasive developmental disorder in children
by The Editors of The Lancet
Following the judgment of the UK General Medical Council's Fitness to
Practise Panel on Jan 28, 2010, it has become clear that several
elements of the 1998 paper by Wakefield et al1 are incorrect, contrary
to the findings of an earlier investigation.2
In particular, the claims in the original paper that children were
"consecutively referred" and that investigations were "approved" by the
local ethics committee have been proven to be false.
Therefore we fully retract this paper from the published record.
[end *Lancet* retraction]
The retraction appears online at:
Billions of dollars wasted on pseudo research and front organizations, instead of lobbying Congress to fully fund IDEA.
What always kills me about people like the "anons" up there is they always accuse us of not trying, not caring, being skeptical, etc. SOme of us HAVE TRIED what they were preaching. And I wasted precious time and dollars on those treatments. Who knows what kind of damage they caused. All I know is that I finally put a stop to it and began seeking other avenues. Biomed did not work for my child. It didn't recover him. It didn't "cure him" of autism. What I realized is that I was desperate.ReplyDelete
Wanna know what worked? Acceptance. I work my rear end off. He is progressing, finally.
Wakefield was tried for ethics violations. He was found guilty. Whether or not he "helped" anyone is beside the fact. Doctors and lawyers and police men and teachers and moms and dads help people all the time. But if they break the law, they need to pay for it. Wakefield broke the law. He did very unethical things. He should have been punished. End of story.
SPLENDID article, Squid! Came across this when I was preparing a lecture and researching this monster, Wakefield. For me, his actions went way beyond unethical. The word, "unethical," fails to convey the full impact of his actions. Words that come into my head are the old time terms that they used to scare the peasants with. "Evil," "wicked," "vile" - these are the terms that come to mind for me.ReplyDelete
I am a mother, a grandmother, and a doctor. I spent 16 years in schooling and training so I could help children. I love medicine and I love children. Wakefield loves Wakefield. Period.
When his report came out, I knew exactly what it meant. It meant I would see young children suffering needlessly. I would see children in hospital and children in the morgue. I would see children born with horrific birth defects because their mothers had not been vaccinated. Give it a few more years - we will see this as these illnesses become more common.
Vaccination is a miracle. My children were vaccinated and so are my grandchildren - ON SCHEDULE. (We also vaccinated ALL children with Guardasil - boys and girls.) The only reason we consent to alter the schedule is because so many parents simply will refuse vaccination unless we do. These are intelligent, well-intended, loving parents. And they listen to Jenna McCarthy rather than someone like me.
As children die from these diseases, it is Wakefield with the blood on his hands. He knew what he was doing - he knew he was misrepresenting the truth and he knew he was scaring parents. He knew that in the long run he was killing children. I absolutely am convinced - unless he's such a terrible doctor he doesn't know this. That seems hard to believe.
We do everything we can to urge parents to vaccinate our children. We LOSE MONEY vaccinating children. Our motivation is the exact OPPOSITE of the motivation of Wakefield - we actually want what is best for children AND for the public.
Immunization relies on everyone being vaccinated. And over time, immunity weakens. Even vaccinated people are at risk of contracting these horrible diseases if they are exposed. The CDC is now looking at revaccinating adults because Wakefield's actions have caused such a reduction in childhood vaccines.
One last note - I refuse to treat any patients who are not vaccinated. I've angered some parents with this. They see me as selfish in some way - how many people have their doctors refuse to see them?! I NEVER thought I would do that! But it's not for concerns about liability - I can document the parents' ignorance in refusing vaccination. It's for the safety of all my other patients - and my staff (and me!). How horrible it would be to have a child ill with mumps or measles in the waiting room! What if they don't tell the office staff they are ill and need the ill child waiting room? And let's be real here - there is only so much space in those waiting rooms. How many ill child waiting rooms should we be required to have? Doctors make less and less money every year. We have to pare our costs as much as possible.
I love medicine and I love children. I wish they could have had doctors try and sentence Wakefield. Believe me, if doctors had decided his fate, he would be in prison with a bunch of murderers and rapists. Just wait a few more years. We'll all be seeing news stories about children dying from these diseases and birth defects from them as unvaccinated mothers contract those diseases.
Sorry to be anonymous, but the last time I spoke at a group about this, I got a death threat and my office was flooded with calls from anti-vaccine cult members. I don't want to do that to my office staff... and I don't need any more messages of "Jesus will be laughing at you as you enter the Gates of Hell."
Nope. Not kidding. That's what happened the last time I went public with this in a non-medical setting. Sad. Really sad.
Dr. Grandma in California USA