An open letter to Jenny McCarthy

9 Mar

Dear Jenny McCarthy,

You start a recent HuffPo post by stating:

Parents of recovered children, and I’ve met hundreds, all share the same experience of doubters and deniers telling us our child must have never even had autism or that the recovery was simply nature’s course. We all know better, and frankly we’re too busy helping other parents to really care.

I simply don’t believe you. Let me explain why.

Firstly and least importantly is your track record as a celebrity parent. You used to claim that you were an indigo mum and your son a crystal child. Indeed you used to participate heavily in the online Indigo community but most of those web pages have disappeared from the web over the last few years. Who’s afraid of the truth there Ms McCarthy? Were you worried those beliefs were just _too_ kooky?

Secondly and much more importantly is your track record as a health advocate. You and your boyfriend have lied about the makeup of vaccines, claiming that they contain antifreeze for example, in order to scaremonger.

Regarding these hundreds of recovered children I have one simple question…where are they? According to Generation Rescue there should be hundreds of recovered children (someone from GR once claimed thousands) and yet I have never seen one – and that includes your own child Ms McCarthy. Your own child that has a very strong doubt over his own autism diagnosis.

It’s easy Ms McCarthy, all you have to do is get onoe of these hundreds of children and do a proper science led case study on them. Have it published in a decent journal and then the scientific community will listen to you. The leadership of GR have known this for _years_ – why has it never been done?

How do you establish that these hundreds of autistic children have not recovered via non biomed means? Helt et al report that autistic children have a recovery rate of between 3 and 25%. And guess what, when I asked her, Helt told me:

The recovered children studied by us and others, and described above, however, have generally not received any biomedical intervention.

Complete medical histories were taken, including vaccination status, and had it turned out that our optimal outcome sample hadn’t been vaccinated or had by and large received chelation, we certainly would have reported that

You go on to say:

Corner one of the hundreds of doctors who specialize in autism recovery, and they’ll tell you stories of dozens of kids in their practice who no longer have autism. Ask them to speak to the press and they’ll run for the door.

I bet they will. They have no answers to the serious scientific issues surrounding autism and instead peddle items like foot detox or urine injection therapy.

You then say:

Who’s afraid of autism recovery? Perhaps it’s the diagnosticians and pediatricians who have made a career out of telling parents autism is a hopeless condition.

I donlt think anyone is _afraid_ of autism recovery Ms McCarthy but I’ll tell you what some of us _are_ afraid of and thats someone with a big mouth and not a lot of science behind her relating horror stories about vaccines and singing the praises of doctors who have no idea what they’re doing.

You then ask about the MMR, which I believe you blamed for your sons autism:

Even with the MMR, studies only compare kids who have otherwise been fully vaccinated. Is that really an honest way to evaluate the issue?

You are wrong Ms McCarthy, clinical studies have looked at the MMR belief and found it wanting. During the Autism Omnibus, Stephen Bustin spent over 1500 hours looking at the only work that alleged an MMR connection autism and found it seriously wanting. Get someone who knows about science to explain it to you.

You say:

How do you say vaccines don’t injure kids, when a government website shows more than 1,000 claims of death and over $1.9 billion paid out in damages for vaccine injury, mostly to children?

I say: _who_ says that? I don’t know anyone who claims vaccines are 100% safe. You’re creating a strawman of enormous proportions to deflect from the reality of your crackpot ideas about autism. Like _all_ medical proceedures, vaccination carries some risk. Nobody claims they don’t.

You then say:

In the recent case of Dr. Andrew Wakefield, why did the press constantly report that his 1998 study said the MMR caused autism when anyone could read the study and know that it didn’t?

Quite possibly because during a press conference given _about_ the paper in question Andrew Wakefield needlessly made claims that linked MMR to autism causation.

…the work certainly raises a question mark over MMR vaccine, but it is, there is no proven link as such and we are seeking to establish whether there is a genuine causal association between the MMR and this syndrome or not. It is our suspicion that there may well be…

is just one amongst many.

Ms McCarthy I find it deeply amusing that directly underneath your closing line:

Who’s afraid of the truth? Usually the people it would hurt the most.

is a lovely graphical link to all of your turgid books. It seems to this autism parent that you have as much to lose in terms of finance as well as credibility as those you name.

The absolute truth is that you don’t understand the science Ms McCarthy. You have well and truly missed the boat on the MMR vaccine, you have no science that establishes any aspect of autism to any aspect of vaccination. All you have is a big mouth and lots of money to spend getting it out there in front of people. I absolutely assure you, you do not speak for the autism community. You speak for the anti-vaccine community and them alone.

29 Responses to “An open letter to Jenny McCarthy”

  1. Regan March 9, 2010 at 17:39 #

    Jenny McCarthy doesn’t even have to set up the study. UConn has a group who is studying such “optimal outcome” cases, and there is an NIMH study right now with an active recruitment. Rather than complain about lack of study – pony up the cases, the researchers are waiting.

  2. Joseph March 9, 2010 at 18:12 #

    The recovered children studied by us and others, and described above, however, have generally not received any biomedical intervention.

    Isn’t this unusual, considering that parents of autistic children are quite accepting of woo? (e.g. Senel 2005.) That’s not easy to reconcile, actually. The first explanation that comes to mind, i.e. that only parents of “severe” children try woo, doesn’t really cut it, does it?

  3. isles March 9, 2010 at 18:21 #

    Given that antivaccine activism has become Jenny McCarthy’s claim to fame, it’s curious that she takes swipes at others for having conflicts of interest. How much press would she be getting right now for her acting career alone? This faux-controversy is her bread and butter and I wouldn’t expect her to relinquish it if God Himself appeared, rolled his eyes, and explained to her that vaccines.just.don’t.cause.autism.

  4. Margaret Romao Toigo March 9, 2010 at 18:26 #

    I’ve read many, many so-called “recovery” stories, in which parents report that their autistic kids learned new skills, or made remarkable progress vis a vis their abilities, behavior and/or cognition.

    I could tell the very same stories about both my autistic kids, except I have no quack remedies to credit because they learned new skills and made remarkable progress without ever getting any of that stuff.

  5. Bad mommy March 9, 2010 at 19:32 #

    I’ve had to quit reading the HuffPo over crap like this. I removed the link from my computer so I won’t be tempted to pop over there and check their latest aggregations from other people. HuffPo had the potential to be a decent media outlet, and then they started up with the woo. I wonder if Arianna Huffington is being paid by the quacks, or if she really does believe this tripe?

    I can’t change the world, but nothing says that I have to provide clicks to drive her ad revenue.

  6. Prometheus March 9, 2010 at 20:38 #

    Ms. McCarthy seems to be arguing for a war of the anecdotes. Well, I have one of my own.

    Several years ago, now, four three-year-old boys met at an early-intervention program run by their school district. At that time, they all were non-verbal, flapped, avoided eye contact, and played in a stereotyped, repetitive fashion. In short, they appeared equally affected by autism.

    Two of these boys had parent who were willing (and able) to try anything and everything to “cure” (or “recover”) them. The other two had parents whose resources were more limited. So, two boys received everything that DAN! and its ancillary organisations could recommend (megavitamins, secretin, chelation, omega 3 oils, hyperbaric oxygen, etc.) and the other two only recieved speach therapy and occupational therapy.

    To be honest, however, one boy in the first group – the “mega-intervention” group – didn’t get “the full DAN! monty”; his parents stopped everything when he was five.

    Now, the four boys are thirteen years old. Two of them are still non-verbal, one is “mainstreamed” in school with an aide and the last is indistinguishable from his peers.

    Curious who got what? Well, of the two non-verbal boys, one got “the full DAN! monty” and one got just speach therapy and occupational therapy. The boy who is in school with an aide was the one whose parents stopped “biomedical intervention” after two years, and the boy who is the most recovered is one who recieved – you guessed it! – only speach therapy and occupational therapy.

    If I were to analyse these case histories, I would conclude that “biomedical” intervetions are utterly ineffective, although a case could also be made – based on these four case histories – that they are at least slightly deleterious.

    Ms McCarthy – and others – like to crow about how many children have “recovered” after receiving “biomedical intervention”, but their numbers are meaningless unless (or until) you know how many autistic children will “recover” without “biomedical intervention”.

    Prometheus

  7. Sullivan March 9, 2010 at 21:10 #

    Fairly content-free from Ms. McCarthy.

    This comment stuck out in my mind:

    The parents of children with autism aren’t crazy. We’re recovering our kids. We’re trying to help other parents do the same, and we hope new parents can avoid our fate.

    Not trying to save kids, but saving parents.

  8. Clay March 9, 2010 at 21:23 #

    I wish Jenny were reading this, in which case I could tell her that her sister Amy looks one hell of a lot better than she does. Jenny’s features are too hard, and the makeup makes her look like a cheap hussy. And I’d be sure to tell her that her son never had autism. That Dr made a mistake.

  9. LAB March 9, 2010 at 21:32 #

    All the parents I know who go whole hog for biomed are parents of so-called “high-functioning” kids (kids with Asperger Syndrome, for example), and I think it’s because they feel that “normal” is just within reach for their kids. Biomed for them is an attempt to make their child just like other kids.

    Nobody disputes that any average child behaves one way at age two, then behaves a completely different (“better”) way after three or four years of maturity. People like Jenny McCarthy can’t seem to understand that it’s the same for a child with ASD.

  10. MikeMa March 9, 2010 at 22:08 #

    Huffpro really needs to stop putting up these science-free posts or at least put up a warning. They don’t help parents and they sure as hell don’t help kids.

  11. Paul March 10, 2010 at 04:53 #

    Of course the standard “scientific” explanation offered in the “peer-reviewed medical literature for decades was that autism was the result of “refrigerator mothers”. I know of no formal retraction of that position let alone apology for all the pain and suffering such crass, hateful BS caused the parents of autistic children. Now we have a situation where many parents (not just easily laughed at former Playboy centerfolds) are saying that vaccines led to their child’s autism. Rather then ridiculing these parents of ill children a second time, just maybe we should listen to what they are saying about the health of their child and use it as the basis for further rigorous and open investigation.

    I don’t know what causes autism, however, there has however been a big push over the past 5 or so years to get thimerosal out of pediatric vaccines. In fact it was to be signed into law that it couldn’t be used in pediatric vaccines until the bill was vetoed by the last president. Since then the decision has been made to expand influenza and now swine flu vaccination to children, vaccines that more often than not contain thimerosal. Despite the efforts of the past five years it is unclear with all the flu vaccination push if the total dose of thimerosal being injected into children may even be increasing. Thimerosal has already been banned from much of the world over concerns of neurotoxicity. It is 49% by weight ethyl mercury. It is not necessary for either the safety or efficacy of vaccines. Why is it still in vaccines given to children and why shouldn’t we be concerned? Just get the darn thimerosal out of the vaccines, then we can revisit the autism/thimerosal question in three years. What could possibly be the harm in that approach? Who could possibly be harmed or embarrassed by such an approach??

    http://healthjournalclub.blogspot.com/

  12. David N. Brown March 10, 2010 at 07:18 #

    Professionals were concerned over thimerosal when the total cumulative amount was close to 200 mcg. If children receive one flu vaccine with thimerosal a year (and note physicians aren’t supposed to give these to children under 4), it would take a decade to reach that level.
    I find it quite bizarre that autism/anti-vaccine groups are still making an issue of thimerosal. It was an unpopular product with professionals even before it became a center of the autism scare, and now it’s pretty well dead. I suspect the only reason it’s being used in flu vaccines is because of lack of investment in alternatives.

  13. Chris March 10, 2010 at 07:49 #

    Paul (or are you Philip?):

    Of course the standard “scientific” explanation offered in the “peer-reviewed medical literature for decades was that autism was the result of “refrigerator mothers”.

    Because it was not scientific. If you are sticking to the idea that real psychologists continue to think of Bettelheim as a real authority, you have several decades of science to catch up on.

    You continue:

    I don’t know what causes autism, however, there has however been a big push over the past 5 or so years to get thimerosal out of pediatric vaccines.

    Hello, what year are you living in? Thimerosal was removed from pediatric vaccines almost ten years ago. Why do you think Sallie Bernard asked for help finding DTaP vaccines with thimerosal in 2001? Because she could not find it, Burbacher had to add thimerosal to the unfortunate primates in his study (which showed that ethylmercury is not as bad as methylmercury). Don’t believe me? Well, here it is: Thimerosal DTaP Needed.

    A group of university-based researchers needs several vials of the older
    DTaP vaccine formulations which contained thimerosal for a legitimate
    research study. If anyone knows an MD who might have some of these
    vaccines or knows where to get them, please email me privately.

    Thank you.

    Sallie Bernard

    If she could not find any, why do you think it was still in the supplies almost ten years ago? Are you going to call Sallie Bernard a liar?

  14. Paul March 10, 2010 at 09:08 #

    Oh my, if the refrigerator mother hypothesis is not scientific, then why has it been all over the “peer-reviewed medical literature”. Surely this constitutes the basis of science upon which we debate. Where, Chris, is the retraction, where in the literature is the repudiation of this “not scientific” theory, or for that matter the apology for blaming autism on the sexual frigidity of the mother. Leo Kanner also promoted this clap trap. Could other theories currently in the “peer-reviewed literature” also prove to be as flippantly and obscenely unscientific as the relatively recent one you care not to defend now?
    “Thimerosal was removed from pediatric vaccines almost ten years ago”
    No, you are in error, in 2007 or 2008 the decision to expand influenza and now swine flu vaccines to children was made. These more often than not contain thimerosal and they are given to children therefore, as I pointed out they are pediatric vaccines. As they are given yearly, more frequently than all other pediatric vaccines it is unclear if the total exposure to injected thimerosal in the pediatric age group is decreasing, increasing or staying the same. Do you really want to support that children should still risk exposure to thimerosal?

  15. Kev March 10, 2010 at 09:27 #

    Paul, since you’re clearly not sure how science works, I’ll explain it to you. Hypothesis either establish themselves to be true or don’t. Do you really need someone to point you to PubMed for a refutation of Bettlehiem?

    Regarding your beliefs about thiomersal I’m afraid they are badly out of step with reality. The flu vaccine is not paediatric. Its an _optional_ once yearly shot that is given to children and adults. Maybe though you’d like to consider all the mercury given to a 6 year old versus what occurs naturally in the human body? We can do that. Or maybe you’d like to compare the amount of thiomersal a child recieves now with what they recieved 10 years ago and compare that to the increase in autism?

    • Kev March 10, 2010 at 09:38 #

      Oh and Paul? Maybe you’d like this little tidbit from CDC ACIP meeting in Feb 2002:

      During the visits, the providers were surveyed about thimerosal-containing vaccines in their inventories. Of the 447 interviews, 83.5 percent reported no thimerosal-containing vaccines in stock at any time since October 2001…

    • Sullivan March 10, 2010 at 09:38 #

      Kev,

      for the record, I believe the CDC just added the flu vaccine to the US pediatric schedule. States make their own schedules, though.

      Since the flu vaccine is seasonal, I doubt states will add the vaccine to their schedules. States tie the “required” vaccines to school admission. There is no point in telling a parent, “well, your child didn’t get the flu vaccine at 1 year old, so your currently 7 year old child can’t attend”. The flu strains in the older vaccines wouldn’t likely protect against the current year’s cop of flu.

      This is similar to the fact that states have not adopted the rotavirus vaccine to the schedules. By the time a child reaches school age, he/she likely has already had rotavirus.

      An interesting note from the last year’s H1N1 flu shots. One location in California had long lines for the a vaccination event. A few thousand people were vaccinated as I recall. There were a lot of vaccines left over–the thimerosal free flu mist. People opted for the shots with thimerosal.

      • Kev March 10, 2010 at 12:56 #

        Thanks for the note Sully 🙂

  16. Science Mom March 10, 2010 at 15:50 #

    Despite the efforts of the past five years it is unclear with all the flu vaccination push if the total dose of thimerosal being injected into children may even be increasing.

    Paul, Thimerosal has been out of U.S. paediatric vaccines since 2001. Thimerosal-free influenza vaccines stocks have, at the same time, been increasing so that they comprise the majority. Thimerosal-free influenza vaccines are given to children under 3 years old and pregnant women although the uptake is very low in both groups. So how you can claim that thimerosal is increasing is rather disingenuous. The only exception was with this past year’s H1N1 vaccine, but again, thimerosal-free preference was given to pregnant women and young children.

    Just get the darn thimerosal out of the vaccines, then we can revisit the autism/thimerosal question in three years.

    It’s been done in the U.S. and also done decades earlier in the EU so we have had several years, not just a few of observing ASD rates continue to rise. You are beating a dead horse.

    Oh my, if the refrigerator mother hypothesis is not scientific, then why has it been all over the “peer-reviewed medical literature”. Surely this constitutes the basis of science upon which we debate. Where, Chris, is the retraction, where in the literature is the repudiation of this “not scientific” theory, or for that matter the apology for blaming autism on the sexual frigidity of the mother.

    You have much to learn about the scientific method. Bettleheim’s hypothesis has been refuted and his hypothesis wasn’t forged, like one notable ‘researcher’ recently in the news. So there is no need for retraction; more rigorous science replaced his, that’s how it works.

  17. a. March 12, 2010 at 23:26 #

    ScienceMom (and others), my experience is that you are very much wrong when you claim that thimerosal has been removed from typical pediatric vaccines. At least in Texas, where our daughter was born, they offered the Hepatitis-B vaccine to all newborns. This vaccine, which we unfortunately allowed the hospital to give to our daughter, does indeed contain thimerosal. I presume the same, or similar, vaccine is used across the nation.

    The amount of mercury in this vaccine (and in thimerosal in general) is equivalent to what a 190 lbs adult male’s body may tolerate. Imagine then the fragility of a newborn baby who’s immune system is at its earliest stage. The mercury is injected directly into the babies’ blood vain, and therefore bypasses any defense mechanism that their bodies have. Please don’t compare this to eating a can of tuna (or related food) containing mercury. It’s far from being the same.

  18. Chris March 13, 2010 at 00:47 #

    Then why did Sallie Bernard fail to find any for a study in 2001? Why did they have to add thimerosal to the HepB vaccine used on the primates for the Wakefield paper that was withdrawn from the Neurotoxicity journal? (“The infants were given either a thimerosal-containing hepatitis B vaccine (they had to add the thimerosal themselves)…“)

    You seem to be a little fact impaired. Vaccines are not injected in to the blood vein.

    Plus, from this page shows the content of thimerosal in a the Hepatitis B vaccine:
    Recombivax HB,(Merck & Co, Inc),Free 08/27/99 (date of approved)
    and
    Engerix B(GlaxoSmithKline Biologicals), Free, 03/28/00, approval date for thimerosal-free formulation 1/30/2007

    Here is an idea, try persuading us with some real data and facts. Tell us when your daughter was born, and the manufacturer of the vaccine with documentation of the level of thimerosal it contained. Also, be sure to tell us what actual evidence you have that supports your contention that thimerosal in vaccines is harmful.

  19. Sullivan March 13, 2010 at 01:28 #

    Chris,

    I had a different link, but same idea-

    Click to access excipient-table-2.pdf

    There are no HepB vaccines with anything above trace amounts of Thimerosal.

  20. Chris March 13, 2010 at 01:44 #

    And why if thimerosal is so common in vaccines, why did they have to add it to vaccines in the two primate studies? The one done by Burbacher (which is why Sallie Bernard was looking for some), and the now retracted Wakefield Neurotoxicity paper.

    These were both sponsored by anti-vaccine groups. If thimerosal is the cause, why couldn’t they find the evil thimerosal containing vaccines?

  21. brian March 13, 2010 at 02:32 #

    The amount of mercury in this vaccine (and in thimerosal in general) is equivalent to what a 190 lbs adult male’s body may tolerate.

    Ah, is this the problem? It seems that you don’t have even the slightest knowledge of regulatory toxicology regarding how safety factors are established, and you’re confusing doses that can be given without any adverse effect every day of your life for seventy years to the dose given on a single day.

  22. mcm April 29, 2013 at 17:47 #

    My son is austistic since birth. He has no speech. He is now 13 years old. His brain skill is about 3 years old. But he learns new skills almost everyday. He receives helps from special classes. And he received all his immunization shots to date. So Ms. Carthy your son’s case is definitely a misdiagnosis case. Please stop talking for the anti-vaccine groups.

  23. anonymous February 5, 2015 at 01:55 #

    My daughter was a normal child until one day after getting a vaccine she had a febrile seizure and her fever reached 104. Is it mere coincidence or is it the same story that I’ve heard time and time again. My neighbor had a son who was given too much of one vaccine by a nurse who didn’t know any better his son also had a severe reaction and was rushed to the emergency room only to also come out of it with severe developmental issues. What was once whole turned out broken. An originally normal mind turned out not so normal. There are many stories like this in the autism community. And the uptic of children with developmental delays can someone explain to me where that is coming from? Autism: A high heritable but surprisingly not inherited disease. A disease that mimics poisoning interestingly. An aggressive vaccine schedule that was unnecessary perhaps? A series of people who get tons of money for these extra vaccines. To what end? Unknown. Nothing but questions. And who do we as parents of autistic children have to turn to? No one. No medical professional will touch us for fear of being sued for fear of someone looking at it the wrong way. The rare doctors that will help are experts in their fields have children that also have the problem or some variation on the matter. Is there a missing piece to this puzzle? Yes. Will biomedical interventions help, Hell, Yes. We have to help each other. There is something wrong and no one is willing to admit it.

    • Sullivan (Matt Carey) February 5, 2015 at 02:04 #

      “Autism: A high heritable but surprisingly not inherited disease.”

      Really? How many autistic parents have you talked to? I know a number. A number with autistic kids. Not a scientific survey, but, yes, it’s inherited.

      Because of stories like yours, people have checked the claims that vaccines increase autism risk. Advocates claimed, “it’s mercury in vaccines”, so people checked. People claimed, “it’s the MMR, so people checked”. Autism risk doesn’t increase with these exposures. A study is ongoing comparing autism rates in vaccinated and unvaccinated populations.

      “And who do we as parents of autistic children have to turn to? No one. No medical professional will touch us for fear of being sued for fear of someone looking at it the wrong way.”

      Really? I’ve never been turned away. Nor do I know of someone who has brought their kid to a medical professional and been turned away.

      “es. Will biomedical interventions help, Hell, Yes. We have to help each other.”

      I’ve been told that chelation help, “hell yes”. It doesn’t. I’ve been told that bleach enemas help, “hell yes”. They don’t. I’ve been told that huge vitamin doses help, “hell yes”. They don’t. I’ve been told that secretin helps “hell yes”. It doesn’t. I’ve been told that chemical castration helps. “hell yes”. It doesn’t.

      In each case, I’ve been told that not only will these (and other ‘therapies’) help, they will cure autism. I’ve read anecdotes for years as each wave of therapies come and go. And, yet, we never see the waves of cured kids. We don’t see the alternative practitioners keeping any one therapy long term.

      I need data. I need therapies that are based on an actual understanding of autism, not based on some well meaning and some outright charlatans telling me what works.

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