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Sharyl Attkisson – are you sure?

19 Aug

Searchingly diligent and totally impartial CBS reporter Sharyl Attkisson has managed to uncover a third case of autism/vaccine related activity via the the Vaccine Courts. Never mind that Kathleen found it 5 months ago eh?

This case originates from a person born in 1974 who had a DTP shot that very same year, exactly 4 months later…..and thats about all we know.

Comparing autism in 1974 with autism in 2008 is not comparing apples to oranges. Its more like comparing apples to trains. In 1974, the DSM, didn’t even contain the _word_ autism. This is the existing DSM in use at the time:

DSM II (1968)
295.8 Schizophrenia, childhood type

This category is for cases in which schizophrenic symptoms appear before puberty. The condition may be manifested by autistic, atypical and withdrawn behavior; failure to develop identity separate from the mother’s; and general unevenness, gross immaturity and inadequacy of development. These developmental defects may result in mental retardation, which should also be diagnosed.

So, in 1974 autism was not even a defined disorder. It was a behaviour. A symptom of Schizophrenia. That’s worth remembering as we go forward.

Atkinson says:

In excerpts from the case below, the government agreed the child suffered “a residual seizure disorder” after his second Diphtheria, Tetanus & Pertussis (DPT) vaccine but attempted to argue that the child’s mental retardation and brain injury were unrelated to the seizure disorder and were, instead, caused by his autism. On the other hand, the court found that the autistic behavior, brain injury and mental retardation were all part of the vaccine injury.

Did they? Is this accurate? Did the court find that _the autistic behaviour_ was part of the vaccine injury?

Atkinson quotes at length from the transcript of the case.

CHILD was born on August 23, 1974, the 9 lb. 9 oz. product of an uncomplicated pregnancy and delivery. CHILD developed normally until the age of four months when he was administered his second DPT vaccination on December 23, 1974… That evening, he experienced a grand mal seizure. CHILD’s mother… took CHILD to the… emergency room where he was found to have a fever of 101.8 degrees at that time and a *bulging fontanelle* …CHILD had a *seizure* on March 25, 1975, with a temperature of 102 degrees. The next day, he had another *seizure* with a *fever* less than 102 degrees…On April 15, 1975, CHILD experienced a *petit mal seizure* without an associated fever… CHILD apparently did well until mid-July 1975, when he had four *seizures, with fever* around 100.7 degrees… CHILD had *additional seizure activity* in November 1975. Again in February 1976, CHILD had *seizures*. At that time, a repeat EEG was grossly abnormal…when CHILD was 21 months of age, (CHILD’s doctor) noted that CHILD had a vocabulary of only two to three words. At that time, (CHILD’s doctor) discussed… the *possibility that CHILD was mentally retarded and developmentally delayed*. CHILD currently is severely mentally retarded and has an intractable seizure disorder.

(The government) respondent has conceded that CHILD suffered a residual seizure disorder as set forth in the Vaccine Injury Table, but argues against a finding that CHILD also suffered an encephalopathy (brain injury). Moreover, (the government) contends that CHILD suffers from autism, which has produced his severe mental retardation and developmental delay. Consequently, (the government) urges that compensation in this case be limited to those expenses that reasonably might be incurred for CHILD’s residual seizure disorder, not for expenses he might accrue because of his mental retardation, developmental delay and autistic behaviors.

The question of encephalopathy.

*(Government physician) believes that CHILD currently suffers from autism and mental retardation that are the result of an independent underlying neurologic condition that pre-dated the vaccination*. However, all tests that were conducted to determine possible causes for CHILD’s condition have revealed none. Furthermore, (government physician) has posited no origin of any underlying neurologic condition. (Government physician) would have us believe that CHILD’s grand mal convulsion following his second DPT vaccination was simply a manifestation of benign febrile seizures and that CHILD had another concurrent underlying (but etiologically undetermined) neurological disorder which later produced his severe mental retardation and autism.

I reject this theory for several reasons. First, the Vaccine Act’s defines encephalopathy as “any significant acquired abnormality of, or injury to, or impairment of function of the brain.” Section 14(b)((3)(A). This definition is extremely broad. CHILD’s initial grand mal seizure indicated an impairment of function of the brain. The question becomes whether this was a benign event unrelated to any lasting neurological sequelae. In my view… (CHILD’s treating pediatric neurologist) is in a better position to accurately assess CHILD’s illness than (government physician). Beginning in 1980, when he first evaluated CHILD, (CHILD’s neurologist) diagnosed CHILD as having static encephalopathy probably related to the time of his first seizure at four months of age.

Based on the foregoing, *I find that there is a preponderance of the evidence that CHILD suffered an encephalopathy within 72 hours of the administration of a DPT vaccination on December 23, 1974, and that no alternative cause for such encephalopathy has been satisfactorily shown*.

Read all that carefully? Good. Now, where in that summation does the Special Master find ‘that the autistic behavior, brain injury and mental retardation were all part of the vaccine injury’

Brain injury – yes. mental retardation – yes. But where is ‘autistic behaviour’ mentioned by the court? In fact, the truth is that the only person who raised the issue of autism at all were the government. They tried to explain away CHILD’s injury by blaming it on autism (which bizarrely wasn’t an actual diagnosis in 1974).

Bottom line: the court did not, I repeat *did not* find that this child (a grown man now) had autism, autistic features or autistic behaviours as a result of vaccines. The closest we get is the phrase ‘static encephalopathy’ which basically means that a child doesn’t develop. This can _lead_ to autism (as well as a whole host of things such as cerebral palsy, learning disabilities, Schizophrenia) but it is not autism. When this diagnosis was given (1980) the child would’ve been 6 and thus well past the age at which autistic symptoms must appear.

An interesting sidenote. We can guesstimate the 1974 schedule. Well, maybe not the schedule but we can at least see which vaccines were in use.

In 1960, the US was using Smallpox, DTwP and Polio. By the mid-80’s, the schedule was made up of DTP, MMR and Polio.

Smallpox was dropped in 1971 and MMR stared in 1963. Therefore we can guesstimate that in 1974 the schedule was the same as the 1980 one. DTP, MMR and Polio. At some point however, the Polio switched from injection to Oral. I can’t find out when.

So – how is this ‘too many too soon’? How is a case from when there wasn’t even an autism category relevant? How is a case where the claim is that one single vaccine caused autism in any way similar to the idea of ‘too many too soon’?

Seeing the obvious

19 Aug

Two months ago I passed the half decade mark in running a blog about autism. I hoped when I started that I would be able to document my autistic child’s progress as xe developed and grew.

Somehow, through the efforts of others I got sidetracked. I no longer feel comfortable about blogging about xyr and that is nothing but a damn shame but it is still a reality. My wife is scared by the invective and hatred she reads in some people who disagree with me and we have an agreement now that I will not mention by gender or name any of my children.

This runs directly counter to my philosophy of trying to raise awareness of the good that can be available to parents and families of autistic people. Of the fun times – and there are many of them – as well as the heartbreaking times (and there are some of them too). I feel frustrated and angry that I have been forced by the irresponsible actions of others to not talk about the good thing I see in my life with autism. Maybe that was their reason for doing it. Who knows.

So, it was lovely this morning to see a story in my newsreader from someone who could see the good things. Who could see the obvious. Someone who chose to see the glass as half full.

The music was being performed live by two female artist of exceptional talent. Their music was sort of 70´s and 80s. They even took the risk of performing a Barry White Song, “My first , My Last, My everything” (I´m not sure that´s the real title), and they shocked me with how well they complemented his music. People were dancing. Old people and young people, but is was the “special” people who caught my eye; The down Syndrome people. They danced to the music and seemed so filled with the joy of the moment that it was contagious. I found myself dancing with them in my mind. They were laughing and moving, touching each other and their partners right at the moment when a spin or a turn was dictated by the music. As I watched I could not help but think of my own grandson, Anthony Adame, who is Autistic.

So maybe this writers choice of words wouldn’t be mine but there is no mistaking the vision of someone _who got it_ .

As I watched the crowd I noted many who looked upon these special people with sympathy and sorrow for them and their families. I know the look. I have often seen it while in the company of my own grandson Anthony. Only few ever intentionally mean to offend. Most simply do not understand the nature and condition of Down Syndrome, or Autistic people. They do not know the joy that many of these very special people have in their lives, or the wonder of living with, or being close to one of them.

Those words could’ve been lifted right out of my heart and mind. The joy is there. It exists. There is a choice that we can make as parents – do we fight a psuedo-war? A war which is simply psychological transference? Or do we see the fact that autistic (or Down Sydrome or Tourettes or Manic Depressive) people can see and experience happiness and bring joy to their families?

This isn’t a matter of religious style happiness. You don’t have to join hands with the world, hug a tree and sing Kumbya. Its really the simplest thing in the world. Its saying ‘my life is not like most peoples. I have hardship beyond what most do. My choices are limited. But look at the joy that my child/friend/grandchild/niece/nephew/cousin/child of a blogger from far away brings! Should I turn away from that? Or should I choose to participate in it?’

Its obvious isn’t it?

Leaky gut aka intestinal permeability

18 Aug

Leaky Gut syndrome is a hypothesis associated with autism by people who believe that toxins (particularly those caused by vaccines – notably the MMR) weakens the lining of the bowel letting various rubbish thorough (undigested food, toxins, whatever) and triggering an immune response and/or leading to Wakefield’s much-hyped but never backed up Autistic Enterocolitis.

This unverified condition has (of course) been found by any number of Wakefield supporters and yet, curiously, no researchers external to Wakefield’s peers have found any evidence for it and the phrase exists as a diagnosis within that AltMed community.

In fact, its not curious at all as the only groups that _did_ find evidence for ‘Autistic Enterocolitis’ used the now discredited Unigentics lab run by John O’Leary.

Anyway, in Feb of this year a team from the University of Calgary published a Pilot study into the ‘leaky gut’ (posh name: ‘intestinal permeability’) issue.

They enrolled 14 autistic kids (all of whom had parents who reported gastric issues), 7 NT siblings of these kids, and 8 NT non-related controls.

In the ‘leaky gut’ opioid-excess theory, it is proposed that increased intestinal permeability in children allows for increased absorption of dietary peptides, which ultimately leads to disruption of neuroregulatory mechanisms and normal brain development.

The reason for choosing autistic kids who were reported by parents to have gastric issues is that the researchers reasoned that these kids would be more likely to have ‘abnormal gastrointestinal tests’.

In this population, the researchers found:

we neither demonstrate abnormal small intestinal permeability, nor abnormal postprandial responses of the enteroendocrine peptide GLP-2.

…..

It has been suggested that increased permeability may be causally related to the onset of the inflammatory bowel disease and not just a consequence of inflammation. Our data does not support a similar hypothesis in autism.

…..

Our study did not detect differences in the functional gastrointestinal parameters measured in a group of children with autism. Although there may be a subset of children with autism with a specific gastrointestinal abnormality there is no firm evidence yet of a role for gastrointestinal dysfunction in
the etiology of autism.

One of the things the authors reported that struck me was:

The subtle endoscopic and histological findings of lymphonodular hyperplasia in the colon and ileum previously described in ‘‘autistic enterocolitis’’ (Wakefield et al. 1998, 2005) are also seen in normally developing children with similar gastrointestinal symptoms (Furlano et al. 2001).

This is only a pilot study of course so not too much can be read into the results but if the study is expanded upon and replicated then the results would be interesting to see. Its certainly a smallish spanner in the works of the ‘autistic enterocolitis’ believers.

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Politics of Mitochondrial-PDD

15 Aug

For most people reading this blog, the story of Hannah Poling is very familiar. She was diagnosed with a condition called “Mitochondrial-PDD” by Richard Kelley of the Kennedy Kreiger Institute (*according to the document David Kirby blogged)

That, of course, is not what makes her well known. A year ago, I doubt many if any readers here would have heard of Mitochondrial-PDD. What makes her well known is that her case before the Federal Court of Claims (the “vaccine court”) was conceded by the U.S. Department of Health and Human Services (HHS).

What did they say? According to David Kirby’s post:

In sum, DVIC has concluded that the facts of this case meet the statutory criteria for demonstrating that the vaccinations [Hannah Poling] received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder. Therefore, respondent recommends that compensation be awarded to petitioners in accordance with 42 U.S.C. § 300aa-11(c)(1)(C)(ii).

The HHS conceded that vaccines caused an injury. In specific, the injury was an “aggravation of an underlying mitochondrial disorder”

It’s worth asking a series of questions at this point, I think

Q) Do all mitochondrial disorders result in autistic features or autism?
A) No.

Q) Do all the children in the 30-child study have vaccine injury?
A) No. It appears that Hannah Poling is unique in that group.

Q) Is mitochondrial medicine a highly specialized field?
A) Absolutely.

Q) Are autism doctors/researchers experienced with mitochondrial disorders?
A) Only a few, and not likely to the depth that the mitochondrial doctors/researchers are

Q) Is anyone going to look at the potential role of vaccines with mitochondrial disorders?
A) Yes.

And that is a key point that deserves some extra attention. Dr. Poling in his letter to the NEJM noted that

Also commendable is the new 5-year research plan of the National Vaccine Advisory Committee, which will entail the study of minority subpopulations, including patients with mitochondrial disorders.

In doing so, he cites the Centers for Disease Control and Prevention’s Immunization Safety Office Scientific Agenda: Draft Recommendations.

Which states:

CISA has formed a working group to identify key research questions and consider study methods related to mitochondrial disorders and immunization, in collaboration with partners.

CISA being the “Clinical Immunization Safety Assessment (CISA) Network”

The document further states as the first lines of the first two bullet points under this proposed study:

Mitochondrial disorders are a heterogeneous group of disorders characterized by impaired energy production.

and

Children with mitochondrial disorders commonly present with a range central nervous system findings.

*Again, note that autism/autistic-features are not the only outcome of mitochondrial disorders.

*I think this proposed study is a good idea. The government has conceded a case, mitochondrial doctors state that the question is open as to whether vaccines could be a stressor that causes a metabolic crisis.

People are pushing for this to be a part of the IACC’s Strategic Plan.

Why?

A group of people, experts in vaccine safety studies, are already going to look at the whole question of the potential role vaccines and mitochondrial disorders. Why carve out the even smaller subset with autism? Or, to put it more directly, why call for a second study, and, at the same time, leave out people who don’t have autism?

The answer is simple: politics. People want the idea of vaccine induced autism in the Strategic Plan. To do so, they are willing to ignore the fact that the study is already being planned and, worse, they are willing to sacrifice a large segment of the potential target population.

It’s just not right. Let the correct groups do the correct study. It’s in the planning stage. If people really care about the question of vaccines potentially causing crises in people with metabolic disorders, support the CISA study.

Why do I have a feeling this isn’t going to happen?

* added on edit.

Fools rush in – Wakefield's race

15 Aug

In today’s Hampstead and Highgate Express there’s an interesting little piece on Andrew Wakefield’s ongoing legal altercation with the GMC.

A ROYAL Free doctor accused of serious professional misconduct during controversial MMR research admitted that short cuts were made in the quest for fame.

…..

Asked whether Dr Wakefield had pushed him into it, Prof Walker-Smith said: “I think that’s true. If we had not had any urgency to get on with it, we would not be in the muddle we are in now because we would have done it in the usual way by getting a referral. Dr Wakefield was a man in a hurry and in full-time research.

Damn. You know things aren’t going well for you when your co-accused is willing to push you under a bus.

Walker-Smith performed completely unnecessary (in my opinion) lumbar punctures on these kids and lo and behold:

Ms Smith said out of the 12 children, complications materialised in two. “I’m not suggesting that the complications were serious, but you would accept that having a child admitted to hospital overnight with a fever and feeling unwell is worrying for parents,” she said.

Performing lumbar punctures and consequently hospitalising 17% of your case load is not great. Neither is it great to perform blood draws at birthday parties and make children pass out and vomit.

But, we know Dr Wakefield is an impatient man. Remember this testimony given by Dr Nick Chadwick?

Q Okay. Did you personally test the gut biopsy samples for measles RNA?
A Yes.

Q What tests did you perform?
A A PCR test, a polymerase chain reaction.

Q What results did you receive from the gut biopsy materials for measles RNA?
A They were all negative.

Q They were always negative?
A Yes. There were a few cases of false positive results, which I used a method to see whether they were real positive results or false positive, and in every case they turned out to be false positive results. Essentially all the samples tested were negative.

…….

Q So you personally tested while you were in Dr. Wakefield’s lab gut biopsy material, CSF and PBMCs?
A Yes, that’s right.

Q And all the results were either negative, or if they were positive it always turned out that they were false positives?
A Yes, that’s correct.

Q Did you inform Dr. Wakefield of the negative results?
A Yes. Yes.

This was the test to ‘prove’ that measles virus was in autistic kids guts and hence cause their autism. Seems Dr Wakefield was too impatient to listen to his own team.

We expect Doctors to have our primary care interests at heart. We should not expect for them to sacrifice scientific integrity and our children’s wellbeing in order to make themselves famous.

Go Danish!

15 Aug

If you search around the web, you can find people suggesting other vaccine schedules than that used in the “overly aggressive” United States.

One you will find, promoted by the autism/vaccine advocacy group Generation Rescue doesn’t include any coverage whatsoever for Measles Mumps or Rubella. That is scary. Just plain scary.

They have others, though. One is “Go Danish”, with this little blurb:

Comment: Denmark is a first world country based in Western Europe. Their schedule appears far more reasonable than ours. They have also been reported to have a much lower rate of autism than the U.S. Do they know something we don’t?

They give the vaccine schedule as of December 2006. Hmmm, makes you wonder what it looks like now, doesn’t it? We’ll get to that.

Well, let’s look at the “recommended” “alternate” schedule based on the 2006 Danish schedule:

DTaP at 3, 5 and 12 months
Hib at 3, 5 and 12 months
IPV at 3, 5 and 12 months, plus 5 years
MMR at 15 months and 12 years

And, this supposedly leads to a lower autism prevalence. Take a look again–that means that giving 5 vaccines at once, three times in the first year of life doesn’t cause a high autism rate. It also means that MMR at 15 months does not cause a high autism rate.

With this on their website as a something to “consider”, shouldn’t they consider what this tells us? Again, assuming that the autism prevalence in Denmark is low, doesn’t this tell us that vaccinations given in combination, early in life, don’t cause autism “epidemics”? Isn’t it pretty clear that the MMR doesn’t cause “autism epidemics”?

The current Danish schedule is now somewhat modified from the 2006 one noted at the Generation Rescue website. They’ve added the pneumococcal conjugate vaccine (PCV) at 3, 5 and 12 months. That’s 6 vaccines at once 3 times in the first year of life.

That sounds like a lot of jabs for those little Danish kids…except that they use combination vaccines. Not just DTaP, but DTaPHibIPV. Wow, a five part combination vaccine. I don’t think this is what Generation Rescue had in mind when they suggested “Go Danish”.

They have also added the HPV (Gardasil) vaccine at age 12, but I really think the discussions of that vaccine have nothing to do with autism and just paint factions of the autism community as anti-vaccine, so I prefer to stay out of that discussion.

The combination vaccine (which I assume is fairly new) and the addition of the PCV vaccine will give groups like Generation Rescue a talking point if/when the autism counts in Denmark increase to something similar to the rest of the world.

But, let’s leave where we started, with the words of Generation Rescue, speaking about Denmark:

They have also been reported to have a much lower rate of autism than the U.S. Do they know something we don’t?

Apparently, the Danish know that multiple vaccines don’t cause autism. If we believe Generation Rescue, it looks like Denmark has the data to show it.

A Little More Left Rudder

14 Aug

I originally put together and posted this video (see end of post) at the beginning of the year at Autism street.

In the short seven months since that original posting, I’ve received several e-mails from a variety of readers expressing positive feedback about it. I’ve also had the opportunity to present it at a couple of conferences on a pretty large screen (something I enjoyed due to the increased visual impact). I’ve even received requests from others (parents and educators) to present it themselves in one form or another – simply because they were interested in presenting the idea of parenting autistic children in a more optomistic light than one might find in the mainstream media.

I’ll ask for my fellow LBRB authors’ indulgence in running a “repeat”, but I think there is a message here that bears repeating from time to time. Amidst all the media and internet coverage of autism, families need to know that their challenges are shared, and at the same time, know that expectations of success can be helpful. While specific successes are never guaranteed, I think flexibility and calm in the face of uncertainty can reduce stress – and probably improve family life overall.

I’d also like highlight something mentioned by commenter Prometheus – sage commentary if you ask me:

Ooooh!

It brought back chills from when I was first learning to do cross-wind landings.

It also brought back chills from when I was first learning to deal with a disabled child.

Good advice to all parents, especially those with an autistic child.

If I may extend your analogy a bit further, there is more than one way to do a cross-wind landing (and any landing you can walk away from is a “good” landing).

The worst thing to do is to freeze up – to say “I can’t do this”.

[Link in the comment by Prometheus was added] All this being said, please enjoy (and spread it around if you are so inclined). Here’s the video:

http://video.google.com/googleplayer.swf?docid=-2521787638543598212&hl=en&fs=true

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Kirby, wrong on the radio

14 Aug

First there was the world tour (well, to London). Then there was the national tour (well, around a day’s drive from NYC, or thereabouts). Now, we had David Kirby, live by phone on the radio!

The talk is broken into two hours. Mr. Kirby starts at about 50 minutes into the first hour. And, he doesn’t waste time. He instantly moves into getting it wrong.

First he says that anyone who thinks that the science is on the side of saying there is no link isn’t keeping up with the science. This is because (un-supported assertion coming up) “new stuff comes up virtually daily” coming in from major universities around the world.

Well, yes, new stuff is coming in daily from major universities around the world. There’s all sorts of stuff coming in on a multitude of areas, so, I guess he’s right. But, there isn’t stuff coming in daily to support the vaccine/autism concept. Take the last 5 years. With stuff coming in virtually daily, there should be over 1,000 “stuffs” (nice that he didn’t say “research” or “papers” or “results”, but “stuff”). Did anyone else listen to the Autism Omnibus? Did you notice over 1,000 stuffs being presented, or did you, like me, hear a few studies that may or may not support the idea?

OK, that isn’t a biggie. He moves on quickly into…come on we all can all guess….that’s right! Mitochondria! And, right off the bat, he gets it wrong.

He brings up that just yesterday from the UMDF (good group from what I can see) about the research from the Newcastle and Virginia Polytechnic Institute that Kev and Kristina noted recently.

Mr. Kirby mentions that the study noted that 1 in 200 have a “DNA mutation that may confer mitochondrial dysfunction” and “..this is exactly what Hannah Poling had when she got 9 vaccines in one day.”

OK. Now the facts. The study indicates a number of specific, measurable mtDNA mutations that might lead to mitochondrial disorders. Only one mtDNA mutation has yet been found with Hannah Poling–and this is not one of those studied in the recent paper. A major piece of David Kirby’s arguments so far has been that the mtDNA mutation that Hannah Poling and her mother have is benign. The dysfunction results, according to David Kirby’s interpretation of his source, is in Hannah Poling’s nuclear DNA.

As an aside, Mr. Kirby’s stance has been that the Hannah Poling type of dysfunction is inherited from the father (an apparent misinterpretation of it’s own). I bring this up to point out even more–David Kirby knows that there are major differences between the recent study and the kids in the upcoming 30-kid study that describes children with conditions similar to Hannah Poling (with the exception of any vaccine trigger, but that gets glossed over by Mr. Kirby too).

It is worth reading this comment yesterday from Prometheus.

One thing he notes is that a number of the people identified in this study had mtDNA mutations linked to Leber Hereditary Optic Neuropathy (LHON). You don’t have to go farther than the name to realize that an “optic neuropathy” isn’t “exactly what Hannah Poling had…”

Do I dare listen to hour two?

Mitochondrial Disease in the news again

13 Aug

Before I start I want to thank Prometheus who explained this in as plain language as he could. If I’ve made any errors then they’re mine, not Prom’s.

OK, so, as Kristina has already blogged, Mitochondrial Disease has raised its head into the autism world again. A new study has reported that prior to previous thoughts of a prevalence of 1 in 5000, it may actually be as high as 1 in 200.

Of course, that has also prompted a HuffPo post from David who wants to bring our attention to the fact that there are no studies that say that vaccines don’t cause mitochondrial disorder and hence (with the right sort point mutation) autism. David states that prevalence estimates range between 7 and 20% for mito causing autism. That’s not actually correct. In terms of published science its between 4 and 7%. There are suspicions amongst some researchers that it may go as high as 20% but nothing is published yet.

But back to this new study. David _seems_ to be implying that 1 in 200 people with mito disorders means that between 7 and 20% of 0.5% (1 in 200) of people have mito induced autism (0.001% if we go with David’s unpublished 20%).

But that is not the case. This study is not claiming that 1 in 200 people have a mitochondrial induced _illness_ . It is saying that:

In conclusion, at least one in 200 healthy humans harbors a pathogenic mtDNA mutation that potentially causes disease in the offspring of female carriers.

Key phrase – ‘in the offspring’.

According to the UMDF (United Mitochondrial Disease Foundation) there is only a 1 in 4 chance that even two parents who share the same gene mutation (autism in our case) will produce a child affected with the disorder.

So are the study authors claiming that 1 in 200 could have a mito disease? No, they’ve shown that one in 200 people has _a_ mutation in a mitochondrial gene that (_if_ it were homozygous – could lead to a disease).

So, to establish prevalence for a single gene (which theoretically induces autism in our example) we are looking at:

0.005 * 0.005 * 0.25 = 0.00000625 (1 in 160,000)

(0.005 is 1 in 200. 0.25 is 1 in 4).

Thats quite a lot different than 1 in 200.

Reading the study, you’ll find that what the authors found was that 15 of 3168 (0.47%, 1 in 211) newborns they studied had one of ten types of mutation seen in mitochondrial diseases. Of these 15, the authors were able to find 8 maternal blood samples to determine if these were new (de novo) or inherited mutations. Of the eight, three of the mutations (37.5%) were not seen in the mother’s mitochondrial DNA, suggesting that they were new mutations.

Taken altogether, this suggests that – had maternal blood samples been available for all fifteen children with mitochondrial DNA mutations, that 5.6 of them (0.17%; 1 in 568) would have been new mutations.

Note that none of the newborns – even those with mutations in their mitochondrial DNA – and *none of the five mothers who were found to have mitochondrial mutations were reported to have mitochondrial disease*. What the authors mention as their concern is that couples considering having children be made aware of the risks of mitochondrial disease and that testing for the more common mutations leading to mitochondrial disease be available.

Bottom line: having the mutation does not equal having the disease.

This is an unbelievably complicated area. We’re talking as lay people about an area even the experts talk about as barely mapped out. I am not suggesting David intended to mislead people with the 1 in 200 figure I merely want to highlight the fact that it is not as cut and dried as that.

If you liked this post, thank Prometheus. I could not have written it without his generous help.

Katie Couric, Sharyl Attkisson, Larry King, and Dr. Jay Gordon

12 Aug

As you may recall, I faxed Katie Couric a while back making some comments and asking for some information.  I find that the CBS coverage of autism is, well, a bit odd.  Sharyl Attkisson seems to be promoting an idea, not following a story where it leads.  The main example I give for that is the total lack of a followup to the assertion made by Bernadine Healy that “[t]here is a completely expressed concern that they don’t want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people.”  Who, precisely, aside from Dr. Healy expressing this concern?

The Voices For Vaccines fax which preceded mine was posted an autism/vaccine advocacy website within hours of being sent, begging the question of who within CBS news sent it, and why there is such a close tie between the two.

Anyway, I shouldn’t rewrite the entire previous blog post–the short version is: I had questions.  I still do.  That’s right, I still do.

I’m not complaining, just pointing out a simple fact: CBS didn’t take the time to respond to simple questions about their reporting.

Now, take a newer event in the autism world.  In preparation for the Every Child By Two press conference last week, some comments were made on the Yahoo group dedicated to the “Green our Vaccines” rally.  One comment in particular by Dr. Jay Gordon struck me as rather bothersome.   The comment was directed at a person named Avrielle Gallagher, who works for Larry King Live.

Being in the mode of wondering about how the media works, especially those apparantly sympathetic to the vaccine/autism causality question, I decided to contact Ms. Gallagher.  I sent the following email to the same address Dr. Gordon used.  For good measure, I used the Larry King Live website to send the same message:

Hello,

I saw an email from Dr. Jay Gordon to you.  It was posted on the JennDCRally autism list.  The email is listed below.

Could you explain what is meant by the term, “[redacted]?  I see that you work for Larry King Live.  Is he asking you to do a show on the conflicts of interest of these groups?

If so, perhaps you would like to read a few analyses of Dr. Offit’s conflicts of interest.  I looked into the public data and posted my views here:

https://leftbrainrightbrain.co.uk/?p=1022

I rewrote this and faxed it to Katie Couric of CBS, as noted here:

https://leftbrainrightbrain.co.uk/?p=1057

As you will see, I am not in agreement with Dr. Gordon.  You will also see that I am the parent of a young child with autism, one who does not subscribe to the autism/vaccine concept.

Rather than “[redacted comment]”, I would like you to consider going after a good, reasoned story.  I would especially like to see a good, reasoned story on the subject of Dr. Offit’s new book, “Autism’s False Prophets”.   This is causing quite a stir amongst the alt-med subset of the autism community.  They have publicly stated that they have targeted Dr. Offit and those are also promoting vaccination (like Amanda Peet).

As you will see from my posts, Dr. Offit appears to have no more financial conflicts of interest regarding vaccines.  He is actually in a position of high independence.  And, yet, he still promotes the same message as before.  That should tell us all something.  In addition, his book is going to be a big story.

So, I ask a simple question: will you go after the story or the person?

I look forward to a response.

I’m still looking forward to a response.  I’m an optimist that way, I guess. 

Oh, you are no doubt wondering why I redacted Dr. Jay’s exact words.  You see, after a bit I decided to email him.  I admit, I should have emailed him from the start, but I did wait a few days.

Dr. Gordron, I saw the below message from the JennyDCRally autism group.

If I may, could I ask what you mean by “[redacted].”?

Given that Avrielle Gallagher works for Larry King Live, this sounds like you are asking for Larry King to do a show about these people in a poor light.

I am the parent of a child with autism.  Surely you can see that the image of the autism community (or segments of the autism community) as a group that would use the media to “[redacted]” is something that I would like to avoid.  While we as a community may be divided on some issues, I would bet that the majority would agree that we rely heavily on the support of the majority of the public.

I look forward to your response.

Sullivan

Even though I misspelled his name, he responded within a couple of hours:

Thanks.

You’re correct, that was very poorly phrased.

What I meant was that there should be more light shined on the financial conflicts of interest which exist.

Jay

(emphasis his)

When I notified him that I intended to include his comments in this piece, he replied:

Dear Sullivan,

The first statement I made reflected my anger. I really do think there is far too much conflict of interest in the lives of many of the vaccine researchers, the CDC and the AAP.

The brief email answer I sent you reflects my true feelings about this.

Please feel free to quote me and, if you do, please also mention that I certainly don’t think that my being immoderate in my comments helps anybody.

Best,

Jay

Dr. Gordon did what Katie Couric, Sharyl Attkisson, Avrielle Gallagher, and the staffs for CBS News and Larry King Live failed to do: answer simple and (I hope) respectfully posed questions.

I could give a long list of the people who have answered simple, sometimes even complicated, questions, respectfully posed. I’ve been very fortunate in that regard. I would have loved to add CBS News and Larry King Live to the list.

It all just makes me wonder. CBS News and Larry King have spent decades reporting on how this person or that company or some group in the government ignored questions. Invariably, those reports cast a bad light on the groups investigated. And, yet, when presented the opportunity to clarify their own actions, they chose to be silent.

Maybe I’ll send a respectful question to Voices For Vaccines and ask if CBS News responded to their concerns. I know that CBS took the time to respond to the Orange County Register’s blog on Autism.

In their reply to the Inside Autism blog, CBS News noted:

…We believe our report was in no way defamatory of any institution or individual, and that no retraction is warranted…

As I’ve noted before, I like the irony of CBS News deciding for itself whether it was defamatory. Strikes me odd given the complaints alleged against, well, basically everyone the vaccine/autism groups have ever complained about.

But, I digress. I’d like to point out that I didn’t claim CBS was “defamatory”. I only bring this up to point out that even though CBS communicated with the Register blog, they haven’t addressed my questions.

A commenter on the Register’s blog said it best in her response to Lisa Randall of Voices For Vaccines. The Register’s blogger decided to highlight the comment, and I pull out the segment that caught my eye here:

…We expect the press to tell us the truth…

The first step is to tell us anything.

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