Archive | September, 2008

Vaccines on the Hill

25 Sep

With a hat-tip to Kim Stagliano at the Age of Autism blog. They got ahold of an email sent by Amy Pisani of Every Child by Two to legislators who were sending staffers to a briefing by Mark Blaxill and David Kirby on vaccines and autism.

Mr. Kirby promised to talk about, amongst other topics, Hannah Poling. That’s not what I would call a good briefing. A good briefing would be if the legislators asked HHS to talk to them about what the concession meant. Somehow, I think the two briefings would be significantly different. Then again, I suspect a briefing by the doctors who are studying that potential cause of developmental regression via mitochondrial dysfunction would also have a very different story to tell than Mr. Kirby. I strongly suspect that.

But, I digress, as I often do. You see, Every Child by Two thought that the legislators who were sending staff to the Kirby/Blaxill briefing should be informed that the information provided by that team was, well, not accepted by the mainstream.

The letter, respecfully written, respectfully submitted is quoted below. One reader of this blog asked Ms. Pisani for permission to reproduce it here. I am using the text from the AoA blog.

Why reproduce it here? Because many in the greater autism community agree with Ms. Pisani. This blogger certainly does. I hope that legislators know that many members of the autism community side with Every Child by Two on this subject.

So, after much delay, here is something written much better than the ramblings I’ve put together:

Today you have been invited to attend a briefing to provide “updates on the recent autism-vaccines debate”. While I recognize that most of you will likely be dealing with other priorities and will not attend the Maloney briefing, I write to you this morning because I feel it is critical to clarify that there is no debate among the scientific community regarding vaccines and autism. Instead, the debate rages on in the media due to the efforts of those who wish to sidetrack critical research away from finding the true cause(s) of autism and treating children and their families struggling with this condition.

‘Last week Dr. Paul Offit’s new book “Autism’s False Prophets, Bad Science, Risky Medicine, and the Search for a Cure” was published by Columbia University Press. This book is a must read for all those concerned with children dealing with autism. The Philadelphia Inquirer writes that “Offit’s account, written in layman’s terms and with the literary skill of good storytellers, provides important insight into the fatal flaws of the key arguments of vaccine alarmists, including such well-known names as Robert F. Kennedy Jr., Sen. Joseph Lieberman (I., Conn.), and Sen. John Kerry (D., Mass.).” And the Wall Street Journal writes “Ever since psychiatrist Leo Kanner identified a neurological condition he called autism in 1943, parents whose children have been diagnosed with the most severe form of the illness — usually in the toddler stage, before age 3 — have found themselves desperately searching for some way not to lose their children to autism’s closed-off world. Unfortunately, such parents have often found misguided doctors, ill-informed psychologists and outright charlatans eager to proffer help.”

In 1999 I was pregnant with my first son just as the questions first arose regarding the MMR vaccine and subsequently the thimerosal in vaccines. After attending Congressman Burton’s hearings (quite pregnant I might add) I too became alarmed. Fortunately, as the Executive Director of Every Child By Two I had at my disposal the scientific research and advice of the world’s leading experts on vaccines and I was able to confidently vaccinate my son without fear of side effects. As of today, eleven studies now show that the MMR vaccine doesn’t cause autism, six have shown that thimerosal doesn’t cause autism, and three have shown thimerosal doesn’t cause neurological problems.

I urge you to read a few of the reviews of Dr. Offit’s book which are listed below and contact us if you wish to have a copy sent to you.

I also ask that you please visit our new website www.vaccinateyourbaby.org – this site was unveiled in August with our new spokeswoman Actress Amanda Peet specifically for parents who have questions about vaccine safety.

at the risk of making this an extremely long blog post, let me do what the Age of Autism did not do: list some of the reviews of the book.

A definitive analysis of a dangerous and unnecessary controversy that has put the lives of children at risk. Paul A. Offit shows how bad science can take hold of the public consciousness and lead to personal decisions that endanger the health of small children. Every parent who has doubts about the wisdom of vaccinating their kids should read this book. — Peter C. Doherty, Ph.D., St. Jude’s Children’s Research Hospital and Nobel Laureate in Medicine for fundamental contributions in Immunology

As a parent it is my job to protect my children. Hearing all the rumors about vaccine side effects made me question the right thing to do. This book makes it clear that vaccines save lives, and that they clearly do not cause autism. — Amy Pisani, mother

In his latest book Paul A. Offit unfolds the story of autism, infectious diseases, and immunization that has captivated our attention for the last decade. His lively account explores the intersection of science, special interests, and personal courage. It is provocative reading for anyone whose life has been touched by the challenge of autism spectrum disorders. — Susan K. Klein, MD, Ph.D., Case Western Reserve Hospital, and Rainbow Babies and Children’s Hospital, Case Medical Center

No one has been more vocal-or courageous-than Paul A. Offit in exposing the false and dangerous claims of the growing antivaccine movement. Offit’s latest book lays waste to the supposed link between autism and vaccination while showing how easily Americans have been bamboozled into compromising the health of their own children. Autism’s False Prophets is a must read for parents seeking to fully understand the risks and rewards of vaccination in our modern world. — David Oshinsky, winner of the Pulitzer Prize in History for Polio: An American Story

All good reviews. But, dang, a Nobel Laureate in Medicine. Not just medicine but immunology? Plus a Pulitzer prize winner? Begs the question of why the Age of Autism didn’t include them.

I am so glad that they offered Dr. Offit’s book to the legislators. I hope that the legislators, or their healthcare legislative assistants take them up on the offer. It’s a well written book, and fairly concise. It really explains how we (the autism communities) got here (into a big mess where vaccines are such a high profile subject–at least in the media) even though we shouldn’t be (because the science has been done repeatedly and shown no link).

Word back on the briefing is that about 75 people attended–a mix of staffers, parents, possibly even a member of the press. One representative was noted. Mr. Kirby gave the short version of his talk (the full version is quite long–take a look at his power point presentations sometime!). But, we can all rest assured that Mr. Kirby is there to save the vaccine program (I do hope that autism-one puts this briefing on their website. I need to hear that claim by Mr. Kirby with my own ears). Mr Blaxill took on the “sickest generation ever” theme, common to the vaccine rejectionists (a claim that has been addressed ably by epiwonk).

But, again, I digress. Let me bring you back to what I see as the one message I think you should take home from this post (repeated from above):

Why reproduce it [Ms. Pisani's letter] here? Because many in the greater autism community agree with Ms. Pisani. This blogger certainly does. I hope that legislators know that many members of the autism community side with Every Child by Two on this subject.

Whilst Mother Warrior McCarthy Oprahed…

25 Sep

David Kirby, who recently had a puzzling and somewhat inexplicable spat with Dr Rahul Parikh was carrying the torch for the male contingent of the autism/antivax crusaders along with Mother Fu…sorry..Worrier Dad…sorry…chief of the quackosphere (term not coined by me but too good not to use) Mark Blaxill at a meeting set up by a political person called Maloney in Washington.

It reminded me quite a lot of the meeting David tried to have with MP’s and Lords over here in June. Then, nobody showed except my MP who I asked to attend to protest on my behalf. What would happen this time?

Well, according to David himself 135 people showed up including 2 US Reps in person (these are the people David wanted to speak to. If I’m right, the event organiser, Carolyn Maloney is a Congresswoman in the House of Reps so, if thats true, there was really 1 US rep other than her) 58 Reps sent staffers (staffers are bottom feeders sent by people who can’t – or don’t really want to – make it. Like glorified gophers.) and 30 Senators sent staffers. So that’s 90 politicals (of whom – lets be honest – only 2, possibly 1, actually count).

Other people there included AAP, CDC, FDA etc.

Anyway, AoA posted two images of the event:

Now, is anyone else looking at those pictures and thinking ‘135 people? Really?‘. It reminds me a little of the odd maths that resulted in an attendance of 8 – 10,000 at the green our vaccines rally.

This event is trumpeted at AoA as ‘standing room only’. Really? Because I can count quite a lot of available sitting room in those photos. Maybe a thought for next time would be to not exaggerate your claims and then post photographs that contradict them.

There was also a very interesting comment left on AoA by a guy called David Atkinson who said:

I happen to be in town on business and I just came back from this meeting. It was a pretty small room but yes it was packed. I am guessing about 50-70 were there. From the looks of it, most were staffers and there were a few parents like myself. I know there were at least 2-3 senators and I am not sure how many if any representatives. David presented very well as usual and then Mark added his piece as well. After this, there were questions taken from the staffers. There were a few pointed questions. I felt that they were quite divisive and loaded questions. This was really dissapointing to me. Mark did a great job at defending and taking these questions on. I was quite impressed with his eloquence as I would have probably killed the snotty little staffer that was quesioning Davids slides. Overall it was a useful meeting. However, for me who doesnt participate in this type of thing very often, I dont feel it was hugely impactful. It didnt seem like this meeting will be any type of game changer for our community but I am a rookie at this. Hopefully I am wrong on that. Great job to David and Mark. I am more inspired now to try to be more active and help out……I would like to help more in future.

Looking at the photos, I would agree with Atkinson that there were about 50 – 70 people there. I would also agree that this not much of a game changer.

Anyway, I guess 1 or 2 US reps is better than the zero that turned up in London. To me though its just growing evidence to support my view that the autism/vax ideas have truly jumped the shark. Anti-vaccine related deaths in the UK, hundreds of anti-vaccine related hospitalisations in the US and ever growing studies showing no association get the message across.

IACC: what caused this and can it be prevented

24 Sep

I bet you thought the nagging was over after this post. Nope, that was for the “services subcommittee”.

There is another deadline still out there–the end of September. That’s when comments are due for the big one–the Strategic Plan.

We’ve discussed two sections so far: “When should I be concerned” and “How can I understand what’s happening“. But, there are another four sections! Plus, there’s the question of vaccines.

The entire draft Strategic Plan is public.

The third section is “What causes this to happen”. This has the “aspirational goal” of:

ASPIRATIONAL GOAL: CAUSES OF ASD WILL BE DISCOVERED THAT INFORM PROGNOSIS AND TREATMENTS AND LEAD TO PREVENTION/PREEMPTION OF THE CHALLENGES AND DISABILITIES OF ASD

As before, instead of copying the entire section, I am taking just the “Research Opportunities” and the “goals” for discussion. First the research opportunities:

Research Opportunities
• Genetic sequence variations in ASD and the symptom profiles associated with these variations.
• Family studies of the broader autism phenotype that can inform and define the heritability of ASD.
• Standardized methods for collecting and storing biospecimen resources from well-characterized individuals with ASD as well as a comparison group for use in biologic, environmental and genetic studies of ASD.
• Case-control studies of unique subpopulations of people living with ASD that identify novel risk factors.
• Monitor the scientific literature regarding possible associations of vaccines and other environmental factors (e.g., ultrasound, pesticides, pollutants) with ASD to identify emerging opportunities for research and indicated studies.
• Environmental and biological risk factors during pre- and early post-natal development in “at risk” samples.
• Cross-disciplinary collaborative efforts to identify and analyze biological mechanisms that underlie the interplay of genetic and environmental factors relevant to the risk and development of ASD.
• Convene ASD researchers on a regular basis to develop strategies and approaches for understanding gene – environment interactions.
• Exposure assessment — efficient and accurate measures of key exposures for us in population and clinic based studies and standards for sample collection, storage, and analysis of biological materials.

OK, inside there is one of the land-mines of the Strategic Plan: vaccines. Let’s pull that out:

Monitor the scientific literature regarding possible associations of vaccines and other environmental factors (e.g., ultrasound, pesticides, pollutants) with ASD to identify emerging opportunities for research and indicated studies.

Some people would like to see even more discussion of vaccines. Frankly, I would like to see this section taken out. Of course they will monitor the literature for environmental factors–as well as monitor the literature for any big new discoveries in autism. The Strategic Plan doesn’t limit the NIH or any other governmental agency from exploring a subject that isn’t written in the Plan.

If you agree, send the IACC an email. Just click the link and send them a short note that vaccines don’t need to be mentioned explicitly in the Plan.

Short-Term Objectives
• Initiate studies on at least five environmental factors identified in the recommendations from the 2007 IOM report “Autism and the Environment: Challenges and Opportunities for Research” as potential causes of ASD by 2010.
• Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 for sequencing studies to examine more than 50 candidate genes by 2011.
• Within the highest priority categories of exposures for ASD, validate and standardize at least three measures for identifying markers of environmental exposure in biospecimens by 2011.

Long-Term Objectives
• Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the pre- and early postnatal period of development by 2012.
• Conduct a multi-site study of the subsequent pregnancies of 1000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014.
• Identify genetic risk factors in at least 50% of children with ASD by 2014.
• Support ancillary studies within one or more large-scale, population-based epidemiological studies, to collect nested, case-control data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed), to analyze targets for potential gene/environment interactions by 2015.

The first short term goal refers to the IOM report “Autism and the Environment: Challenges and Opportunities for Research”. This is a transcript of a meeting held to discuss environmental contributions to autism. This report is sometimes misrepresented. If you head the Omnibus proceedings, you know what I mean. The PSC lawyers acted as though this was on a par with the 2004 IOM report on vaccines and autism, discussing the conclusions of the report. (Hint–it is a transcript of personal opinions of the participants).

That aside, this is a big section of the Plan. There is a lot of work to be done in those goals. There aren’t even good “subtypes” identified (although some have been proposed). I don’t know how time consuming and expensive the genetic testing is, but anything involving 20,000 subjects is big. Pushing the genetic risk factors up to 50% is going to be challenging, considering that most genetic links found are under 2% of the total. The Plan states that about 10-20% of the genetic links are already known–that leaves 30-40% to be found. Likely that’s about 30-40 (or more) genetic risk factors.

I’d like to have more information on this statement:

Within the highest priority categories of exposures for ASD, validate and standardize at least three measures for identifying markers of environmental exposure in biospecimens by 2011

Does this mean that some method of testing in petri-dish type experiments will be validated? So, we don’t have any more thimerosal dumped on cancerous cells and a link claimed to autism declared? I’m all for that. I wonder if it’s possible, just like I wonder if an animal model is possible.

That said, take a look. Discuss below and please, email them.

Jenny McCarthy's Mother Warriors

24 Sep

Jenny McCarthy’s bullshit-fest starts up again today. Look forward to her and Jim Carrey on various US talk shows.

Her new book is called ‘Mother Warriors: A Nation of Parents Healing Autism Against All Odds’ which is equally amusing (mother warriors?) and, well, bollocks. A nation of parents healing autism? Really? Where? I’ve been having this conversation with the autism/antivax loons for over five years now: show me the kids who were once autistic who are now cured by biomed? And I don’t mean your sisters best friends cousins kid, I mean case studies. I keep hearing that there are _thousands_ of these kids – surely some doctor treating them somewhere thought – hey, a case study would be a good idea.

And this definitely includes Chief Mother Warrior McCarthy herself and her somewhat loose definition of what ‘healing autism’ is. I posted awhile ago about how Chief Mother Warrior McCarthy had described her son as recovered (as oppose to recover_ing_) in April this year and then go on to describe how she was planning to chelate Evan in June 2008. Why? If he’s recovered, why is the poor lad being subjected to chelation?

Meh, cup and ball trick much?

So, I thought – given that Chief Mother Warrior McCarthy is doing it – that we might take a closer look at chelation in the form of quotes from Mother Warrior’s on the CK2 (Chelating Kids 2) Yahoo group. I’ll say up front, it makes pretty grim reading but I think people need to know what exactly being a Mother Warrior entails. These are all from different people.

It just takes time. My twins (almost 8 now) have been doing IV CaEDTA roughly every 2 weeks for over 3 years (71 and 78 IVs). The first half-dozen or so were really traumatic, then the kids started realizing it really wasn’t so bad after all and got to the point where they didn’t need to be held anymore, then they didn’t cry anymore, etc.

My son is 6 and I have to hold him down for the IVs – we’ve done 10. Today he got poked 3 times and has purple hands from blowing veins. As I’m lying on him, both of us sweating with 2 nurses trying to do the IV, I’m thinking is is worth it?

I used to give my son a valium before the IV’s when we first started. We had to give him 15 mgs when he was about 90 pounds.

We give my son 300 mg of L-Theanine 90 minutes prior to the IV…

We are considering IV chelation with our almost 7yr old. We started with nutritional IV’s just to see how he would do. THe first one was rough the second was a piece of cake. My Mom instinct tell me they made him feel better…

We do IV chelation on experienced regression during the first 3 or 4 months. I would consider them “healing” regressions, though because he didn’t stay in a regressed state and always came out of the regression….

Now these are bad. Blown veins, chelation over periods of years, kids being medicated to calm them down from their obvious terror. But these next are worse.

Any thoughts or experiences with chelation on children under 16 months? The child in question was tested moderately mercury toxic….

My 15 month old son had a porphyns test by Phillipe Auguste labs that showed very high lead and mercury that spiked off the page, so our DAN is starting him on DMSA suppositories once his OAT test comes back demonstrating that he’s medically stable enough to chelate…

We actually began chelating our son at age 2

And the absolute crowning horror. There aren’t words for this last one so I’m just going to quote it. Remember – this is an example of McCarthy’s Mother Warriors in action describing a process she was going to try on her own son.

I started chelating my son at 13 months of age w/ IVs. Dr Bradstreet’s office chelates little kids. It was actually easier to give him the IVs before he turned 2. My DAN, Scott Smith, says that kids under 3 chelate much faster and it is a good idea to start early.

David, I am not embarrased but puzzled

23 Sep

I just read David Kirby’s short post dig on Age of Autism at the review Dr. Rahul K. Parikh made yesterday on Salon.com. I am quite puzzled by David’s post I have to say.

In his overly simplistic way, this pediatrician from Northern California, who has repeatedly ignored third-party invitations to debate me in an open forum, praises Dr. Paul Offit for his attacks on groups like DAN! and Generation Rescue, while holding up Autism Speaks as a bastion of rational scientific thinking, one that does not succumb to what this doctor calls the “slanted science” of thimerosal research:

While Offit focuses on those groups (like Defeat Autism Now! and Generation Rescue) that have been very confrontational and that support slanted science, there are many … groups (like Autism Speaks) that have been broader in their search for autism’s causes and cure.

Overly simplistic is not a fair or polite way to describe Dr. Parikh or the review at Salon. The quote David chooses to single out is precise and accurate. DAN! and GR _are_ confrontational. Several of their members have expressed themselves in terms that are aggressive and violent. They _do_ support slanted science. Generation Rescue once published an ad in (I think) the NYT that thanked researchers for their work on mercury. Several of the named researchers immediately sent an (unpublished) letter to the editor to protest that their work was misrepresented. How much more slanted can you get?

And David, if you’re going to take Dr Parikh to task for ignoring invitations to debate you in an open forum, should I take you to task for refusing to participate in a debate with me in an open forum? Because you did.

David then goes on to suggest that Autism Speaks are just as slanted as GR or DAN! by citing the fact that they have sanctioned three studies that concentrate on vaccines.

Dr. Parikh – Please get your rhetorical ducks in a row, or refrain from participating in this discussion altogether. Misinformation is a dangerous thing. If Autism Speaks is not “slanted,” then how do you explain their support for thimerosal-autism research?

If we look back at what Dr Parikh actually _said_ we can see the picture is clear. Dr Parikh said:

….there are many … groups (like Autism Speaks) that have been broader in their search for autism’s causes and cure.

Autism Speaks have funded three out of twelve studies that concentrate on vaccines. I would not describe a 25% hit rate as supporting thiomersal-autism research. I would describe it exactly as Dr Parikh – ‘broader in their search’. In other words, 75% of their research is _not_ about vaccines. That’s pretty broad.

Its a puzzle. I can only think David didn’t understand Dr Parikh’s rhetoric. I’ll close with an echo of David’s challenge to Dr Parikh. If you ever do change your mind about the debate – a debate in the most open arena of all – a weblog – just let me know. There’ll be no money in it at all but you’ll be able to say you did what Dr Parikh didn’t and accepted the challenge.

Dr Parikh responds.

Scientology and HBOT

23 Sep

At the start of the month I read a post about HBOT on the OC Register. Standard fare but something about it nagged away at me.

I realised it was the sidebar where the author had listed two purveyors of HBOT in Orange County. One of them was called Whitaker Wellness. The name rang a bell so I found the website and lo and behold, found the connection – Julian Whitaker, MD.

Whitaker Wellness in Costa Mesa was the first hyperbaric oxygen therapy clinic in Orange County to treat a large number of autistic patients.

I first blogged about Whitaker two years ago. It turns out that he has some interesting friends:

[Whitaker]….is with the Citizens Commission on Human Rights, established by the Church of Scientology to expose what the church calls psychiatric violations of human rights and who pushes a variety of CAM treatments including chelation.

My goodness these Scientologists get about.

Julian Whitaker is – like all DAN! docs and Scientologists down on toxins and big on how to get rid of them all but intriguingly the word ‘autism’ is not used once on his website, although a web search for Dr Whitaker and autism reveals lots of results.

I was concerned two years ago at the prospect of Scientologists being so involved with the autism/antivax movement and I still am. I hope Dr Whitaker is totally upfront with all his patients regarding his beliefs.

Salon – Inside the vaccine scare

22 Sep

Salon redeems itself from producing what Orac at the time called biggest, steamingest, drippiest turd ever dropped on the web.

Three years ago Salon published the notoriously innacurate ramblings of RFK Jr. After uproar in the web science community and numerous fixes and amends to the original piece, what was left was still an awful piece of credulous rubbish.

It seems that Salon learnt their lesson. This time, they have ensured that the person talking about vaccines and autism is a _scientist_ as oppose to a crowd-pleasing politician.

Rahul Parikh has published a review of Paul Offit’s Autism’s False Prophets which differs so wildly from the RFK Jr debacle that its almost impossible to think of them being in the same publication.

I don’t want to do a review of a review as that would be bizarre and unnecessary but Parikh makes some key points that I want to address. The first one is the way the book starts.

Early in Dr. Paul A. Offit’s new book, “Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure,” he describes a threatening letter he received from a man in Seattle. “I will hang you by you neck until you are dead!” it read. The FBI deemed the threat credible, assigning Offit a protective officer who, for the next few months, followed him “to and from lunch, a gun hanging at his side.” He then recalls a suspicious phone call from a man who recited the names of Offit’s two children and where they went to school: “His implication was clear. He knew where my children went to school. The he hung up.” These days, the hospital he works in regularly screens his mail for suspicious packages.

Such stories usually come from pro-choice physicians on the front lines of the abortion debate. But Offit is no obstetrician. Rather, he is a baby doctor — the chief of pediatric infectious diseases at the Children’s Hospital of Philadelphia. The threats against him and his family have come not from antiabortion advocates, but rather from anti-vaccine crusaders who believe that vaccines cause autism. Offit, it turns out, has been targeted by them because he helped to develop a vaccine that prevents rotavirus, a serious gastrointestinal infection in children, and because he has been staunchly pro-vaccine in a time when there are many doubts about their safety.

It is amazing that we should be in a situation where a doctor who is actively saving lives is being targeted for that very fact. What is even more amazing is the fact that the very antivaxers who hate Offit so much simply don’t believe he _is_ being targeted. A few comments from Lisa Jo Rudy’s piece on Offit’s book illustrate this perfectly:

It’s very hard to judge the seriousness claims like Offit’s….

Mark Blaxill, Safe Minds.

I have heard Dr. Offitt make his claims of threats, etc. on more than one occasion. But I have never seen any real evidence of those alleged threats.

Wade Rankin, autism/antivax blogger

I would suggest that a reference to the possibility that some agency or company would harm one’s children in the future could be construed and repeated as a “threat” to one’s children if that threat would help to garner sympathy and label an opposing side as nuts.

Mike B

An amazing reaction. They genuinely hate Paul Offit so much that they think he is making up threats made to his children. And they think he’s doing it to ‘garner sympathy and label an opposing side as nuts’. This is the type of denial and refusal to see their own shortcomings that has led to the sorry state of autism/vaccine science in the first place.

Parikh also documents the reality of the science today and the reality of how the wider world views the autism/anti-vaccine community.

Despite what Wakefield claimed in his paper, his hospital’s ethics committee never approved his experiments to put children to sleep under general anesthesia, do spinal taps on them, take biopsies of their intestines (one of the children was hospitalized after his colon perforated in several places) and take volumes of blood from their veins. Deer also discovered serious conflicts of interest: Wakefield’s research was secretly bankrolled by a personal injury lawyer whose clients were suing MMR makers. Wakefield himself was given close to a million dollars to prove that the MMR caused autism. He had filed a patent for a new MMR vaccine at the same time he was doing his research. Upon learning this, Lancet retracted his paper, and he was charged with professional misconduct in 2005. If he is found guilty of misconduct, he will never practice medicine in the U.K. again.

The people in the autism/anti-vaccine community see Wakefield as a persecuted hero. Everyone else in the entire world who takes an interest in the matter sees him as a weak man who tried to game people – and did. Possibly he still is.

This level of disconnect between what those in the autism/antivax community see as the reality and the _actual_ reality is sometimes shocking. Even for me who has been in the front line of this debate for five years now, some of the things I read about and see from these people make my jaw drop.

I blogged about an example of this not long ago when Safe Minds Board Member Heidi Roger stated that Polio could be preferable to autism – and even that death could be better than autism.

This is a sadly far from uncommon opinion amongst a certain type of autism/antivax believer. To sum up their personality type would, I think, bring a sizeable minority of them very close to Munchausen syndrome by proxy/ Fabricated or induced illness , the indications of which seem very familiar to me from reading the Yahoo groups over the last few years:

* A child who has one or more medical problems that do not respond to treatment or that follow an unusual course that is persistent, puzzling and unexplained.
* Physical or laboratory findings that are highly unusual, discrepant with history, or physically or clinically impossible.
* A parent who appears to be medically knowledgeable and/or fascinated with medical details and hospital gossip, appears to enjoy the hospital environment, and expresses interest in the details of other patients’ problems.
* A highly attentive parent who is reluctant to leave their child’s side and who themselves seem to require constant attention.
* A parent who appears to be unusually calm in the face of serious difficulties in their child’s medical course while being highly supportive and encouraging of the physician, or one who is angry, devalues staff, and demands further intervention, more procedures, second opinions, and transfers to other, more sophisticated, facilities.
* The suspected parent may work in the health care field themselves or profess interest in a health-related job.
* The signs and symptoms of a child’s illness do not occur in the parent’s absence (hospitalization and careful monitoring may be necessary to establish this causal relationship).
* A family history of similar or unexplained illness or death in a sibling.
* A parent with symptoms similar to their child’s own medical problems or an illness history that itself is puzzling and unusual.
* A suspected emotionally distant relationship between parents; the spouse often fails to visit the patient and has little contact with physicians even when the child is hospitalized with serious illness.
* A parent who reports dramatic, negative events, such as house fires, burglaries, or car accidents, that affect them and their family while their child is undergoing treatment.
* A parent who seems to have an insatiable need for adulation or who makes self-serving efforts for public acknowledgment of their abilities.

I might catch some flak for making this comparison but whilst I am not suggesting that everyone autism/antivax adherent is MSbP or FII, I do think – as I say – a sizeable minority are. In the list above I have emboldened the characteristics I personally have seen lots of evidence of.

At any rate, whether there is genuine evidence of MSbP or FII or not, there is definitely an ongoing unreality to a certain group of peoples lives with autism. Why? To pretend to themselves they have total control over something that they do not understand? To medicalise something in order to keep alive the hope of a medical cure? To fuel their pre-existing lust for conspiracy theories? All of the above? None? Something else?

It gets to a point when it starts to not matter. When autistic children are literally being experimented on with absolutely no control in place like they are being with chelation, like they are being with Lupron and like they now are being with OSR we have to do something. When children in the UK are dying of vaccine preventable disease and children in the US are being hospitalised then we need to do something.

Paul Offit did something.

Sunday Solutions – No. 1

21 Sep

And now for something completely different.

I’m introducing ‘Sunday Solutions’ as a total change of pace from the usual material on the blog.

The Sunday Solutions will be an ongoing series in which I’ll introduce parents and other interested users into some technological solutions that can help address some of the key worries parents have about their kids using a computer or the internet, especially their autistic kids who can be very vulnerable to certain people and/or scenarios.

For this first Sunday Solution, I’ve shown people how easy it is to use the Firefox web browser to control what content is available to their kids. I (and I assume you) don’t want to stop your kids using key websites like YouTube etc but you don’t want them exposed to some less than savoury elements of it. Using this first Sunday Solution you will be able to retain total control over what your children can and can’t see.

You can download the PDF to read at your leisure.

Hope you find it useful. Don’t forget to @follow Left Brain/Right Brain on Twitter for further announcements and please – if you find this of any use, please pass it on to a friend and vote for LB/RB in the Bloggers Choice Awards!

Write the IACC today!

19 Sep

The IACC (Interagency Autism Coordinating Committee) is seeking input. They have two RFI’s (requests for input) out right now, and one has a deadline of today!

The one with the deadline today is for the services subcommittee. The RFI is on the NIH website.

abfh has noted this deadline. ASAN (the Autistic Self Advocacy Network) has an alert on this, including talking points. This was also discussed recently on this blog.

Talking Points

The Autistic Self Advocacy Network has developed these talking points
to assist individuals in writing statements to IACC on the topic of
supports and services.

The RFI lists a number of areas of concern that can be addressed. You
do not have to address every topic. You can pick the ones that are
the most important to you. Feel free to change the wording so that it
reflects your most important priorities.

Education:

Studies need to be undertaken that assess current levels of supports
and services within the public education system. When treatments and
interventions that look promising are developed, additional funding
must be appropriated to address implementation so that teachers,
students, parents, and other education professionals are up-to-date
and have access to information, training, technological resources
such as AAC, and other resources.

Health and medical services (including dental):

Access to health and medical services, particularly for adults on the
autism spectrum, is of paramount importance for research funding.
Current studies that focus on diagnosis and treatment of children do
not address the very real need for healthcare access for autistic
adults who may not have insurance, may have communication
difficulties and other difficulties that prevent them from obtaining
adequate care. Education of health care professionals so that they
can interact knowledgeable with autistic patients/clients is one area
for research into services and supports.

Housing:

Research into housing alternatives, following ideas such as those in
the Community Choice Act and Money Follows the Person projects,
should be undertaken. Warehousing of individuals in residential
centers is undesirable yet often occurs because infrastructure for
other types of housing is unavailable or underutilized. Research
needs to include cost-effectiveness measures, some of which are
already available, which show that housing in the community costs
less than residential living.

Transitions:

Research into the most effective transition options needs to be
undertaken. Parents and young adults on the spectrum often have
nowhere to turn after they age out of the school environment. A
clearinghouse of options should be researched and developed so that
families will have resources already in place.

Employment:

Research into employment options and opportunities for people on the
autism spectrum needs to include components such as accommodations,
training, and career counseling. Research in other areas such as
treatment, interventions, diagnosis, and genetic research, can be
used to counter stereotypes of what an individual on the spectrum can
do for employment. Resources for trainers, counselors, employers, and
others need to be developed so that autistic people are not
discriminated against in the employment world because of stereotypes
and misunderstanding. The IACC and NIMH can set the tone for accurate
information that can help employers assess individual strengths and
weaknesses rather than relying on discriminatory assumptions.

Community inclusion:

Full inclusion in the community needs to be examined and research
initiatives should focus on this very important aspect of adult life,
and life for children who will grow into adulthood. Community-based
participatory research should be implemented that will accurately
reflect the actual needs of the autistic teen and adult population.

Safety:

Research into areas that can improve safety for autistic people,
throughout the lifespan, and in different situations, needs to be
undertaken. Areas to focus on are keeping people on the autism
spectrum safe if they have a tendency to wander, or do not understand
dangerous situations. Education of parents, professionals, first
responders, and autistic people should be undertaken, and the best
methods for ensuring safety should be addressed by research in this
area. Sometimes autistic people can appear unusual in behavior, which
will attract attention from law enforcement and other personnel.
Training for professionals in aspects of autistic behavior that might
not be understood is a crucial area to address in order to promote
the safety of all.

Older adults:

Many older adults remain undiagnosed. Some have no health insurance.
Some are living in poverty or are homeless. Many older autistic
adults will need medication, including medication for health
problems. Research into how to best reach out to older adults who may
not have an autism diagnosis but may present as in need of services
should be undertaken. Research into the effect of common medications,
including for non-autistic-related health problems such as diabetes,
should be undertaken. Because of the possibility of extrapyramidal or
paradoxical drug reactions, and the general effect of certain drugs
on older people, cases should be documented so that any adverse
pattern of reaction can be established. Housing, health care, dental
care, and community inclusion should all be addressed and tailored to
the older autistic population. Community-based participatory research
can be invaluable in determining the best ways to access health and
other care.

Finances:

Across the lifespan, autistic children and their families, autistic
adults and elders will have various financial needs. Research into
how to help families and individuals on the spectrum cover the costs
associated with treatments and interventions, and a clearinghouse for
resources should be developed. In addition, financial resources for
autistic adults who have difficulty with financial concepts should be
researched and implemented.

Guardianship:

Research into the best ways to establish guardianship should be
undertaken, including autistic adults as full participants in the
research process in order to establish the most ethical procedures
for guardianship. Guardianship should be tailored to the needs of the
individual rather than being a one-size-fits-all category, since some
individuals will need guardianship in limited areas, but not all
aspects of their lives.

Estate planning:

Families with autistic individuals need to take extra precautions in
planning an estate, especially for individuals who may need ongoing
care throughout life. Autistic adults also may need assistance with
estate planning. Research leading to the development of estate
planning tools that can assist families and autistic individuals in
making sound decisions should be initiated.

Take a look at the talking points above. Take a look at the RFI. Then, send an email to the services subcommittee.

Age of Autism on chelation cancellation

18 Sep

I posted yesterday on the cancellation of the NIH study that was going to be examining chelation’s efficacy as an autism treatment.

What I said was that it was a good idea and it is. The simple facts are that autistic children are not toxic. The only labs that consistently find autistic children to be toxic are the labs Dr Jeffrey Brent identified as ‘these ‘doctor’s data’ type of laboratories’. In fact, its probably worth repeating his testimony about these labs:

Q: Dr Mumper discussed today some key aspects of chelation therapy….as a medical toxicologist do you see any reason for the chelation to remove mercury from either Jordan King or William Mead in these cases?

A: Absolutely not….there is no test in medicine that is more valid for for assessing mercury toxicity than an unprovoked urine mercury concentration. [For Jordan King and William Mead]…their unprovoked urine concentration is exactly in the normal range.

On the other hand, they have been chelated. And the justification for that chelation with regard to mercury comes from what you see in the right hand column where in both cases, 4 out of 5 provoked examples have been…uh…increase urine mercury. Well, you’re supposed to have increased urine mercury with provoked examples! Therefore there is absolutely no indication based here or anywhere else I saw in the medical records that suggest that there is any mercury effect in these children and therefore that was absolutely no reason to chelate them for any mercury related reason.

The standard way of chelating autistic kids is to do a provoked challenge test. As Dr Brent says – you’re supposed to have increased levels with provoked examples.

Q: There’s nothing here that would be out of the ordinary – from your experience – absent, even in the absence of a standard reference range.

A: Well, in truth we don’t (?) urine/leads because the ‘gold test’ is blood/lead so I haven’t looked at many urine/leads in children that I have chelated. So I can’t speak to that in my experience. But I have seen a number of patients now come to me because of these ‘doctor’s data’ type of laboratories which are based on urines – chelated urines – and they always have high leads in their chelated urines and I tell them ‘well, lets just do the gold standard test, lets get a blood/lead level and so far, 100% of the time they’ve been normal.

To sum up, the labs that consistently find a need to chelate autistic kids use the wrong sort of tests. When expert Toxicologists such as Brent do the proper ‘gold standard’ testing, the results are normal 100% of the time.

Its as simple as pie. You use the wrong test, you’re going to get the wrong results.

And yet, over on the Age of Autism website, they’re getting very angry about this cancellation. The angry opening paragraph to a recent post highlights the lack of logic in their stance:

So who canned the NIMH chelation study as “too dangerous?” Children are given huge doses of chemotherapy and radiation in a desperate effort to save them from cancer – fully knowing the side effects themselves can be deadly. It’s a fair risk most parents are willing to take to help a sick child.

Chemo is a standard treatment for cancer. It is medically indicated. Chelation is not a standard treatment for autism. It is not medically indicated. The reason it is not medically indicated is because there is no evidence metals are linked with autism.

There is a chain of logic that must be followed. If you want a type of treatment to be assessed for its efficacy, then your first step is surely to establish that there is a medical necessity for that treatment. If there isn’t then what you are doing is inflicting a completely unnecessary procedure on a child. In this case, a procedure that has been known to cause lasting brain injury in animals (rats).

The comments on AoA go from the bizarre:

So, why do I sense Pauly PrOffit’s grubby, greedy little fingers on this? This smells like something that he would do

To the paranoid:

THIS HAS BULLSH*T WRITTEN ALL OVER IT!!!

To the conspiracy-esque:

Notice the studies they WON’T do:
Studies on the effects of chelation.
Studies comparing unvaxed and vaxed children for autism.
Studies to find the misdiagnosed adults with autism to prove there’s been no increase.

When is everyone going to wake up to what’s happening?

NB – a study to find adults in Scotland is being planned if I recall correctly.

No-one considers the most likely reason for this cancellation:

a) There is no evidence metals cause autism
b) There is evidence chelation can cause injury
c) There is therefore what any rational person would see as an unacceptable amount of risk to children.

And of course we have the usual ‘my child recovered’ stories. Why do these stories never seem to get written up as case studies I wonder? We’re told there are thousands of them – where? Where in the medical literature are they? Apparently there are lots of rogue paediatricians who believe the antivaxxers so why aren’t they doing case studies on the multitudes of autistic children who are now totally recovered?

Personally I think that is what has bullshit written all over it.

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