Left Brain/Right Brain

A busy week in vaccine-injury news: the Cedillo appeal

2010-09-03T23:12:07Z

The past week has had three somewhat major news events in the world of vaccine injury: the denial of the Cedillo appeal, the award of damages in the UK for an MMR case and the damages award in the Hannah Poling case. I thought I would write about them all, but the Cedillo appeal part is already long so I will leave the other subjects for another time.

The Cedillo Appeal

Kev blogged the denial as Cedillo appeal denied. I had blogged the hearing in June as Another appeal heard in the Autism Omnibus, then blogged the actual audio from the hearing as Audio of the Cedillo appeal part 1 and Audio of the Cedillo appeal part 2.

The arugument used in the Omnibus Autism Proceeding for MMR causing autism is basically the model that grew out of the work of Andrew Wakefield: that measles virus (MV) from vaccines persisted in the body, particularly in the digestive tract. Wakefield’s theory involved the MV infection causing intestinal permeability which allowed substances to “leak” out into the system (the “leaky gut” hypothesis). The Cedllio’s attorneys argued that the measles virus itself traveled to the brain, causing inflammation and autism.

This is not the first appeal for the Cedillo family, or for the test cases in the Omnibus. It is likely the last, however. The next step would be the U.S. Supreme Court. The Supreme Court would be unlikely to hear an appeal. The Supreme Court does not hear all the cases submitted, instead choosing to hear mostly cases which clarify points of law. The Cedillo appeal so far has not been about the laws for the most part but about the procedure of the case. One exception is the question of whether the correct standard was applied to reviewing the admissibility of the evidence. The Court used the Daubert standard, which the Cedillo’s attorneys argued was incorrect. This is not the first time the Court used Daubert, and it is not the first time the appeals court upheld it.

The other arguments made include whether the testimony and reports of Dr. Stephen Bustin should have been allowed. Dr. Bustin’s reports were obtained very shortly before the hearing and were based on closed documents from a U.K. proceeding on MMR and autism. The Cedillo’s attorneys argued that they were unable to prepare a counter argument to Dr. Bustin on short notice and that since they did not have access to the underlying data and documents. In a civil court, these arguments would have carried much weight. However, in the vaccine court, much flexibility is allowed. In this case, the Special Master allowed the evidence to be heard, and gave the Cedillo’s attorneys over a year to obtain the background data from the UK and mount a counter argument.

The Cedillo’s attorneys did not attempt to obtain the background data for the Bustin testimony in year that followed the hearing. Yes, it isn’t that they were unsuccessful, they didn’t try to obtain it. They stated that their consultants in the UK advised them that it was unlikely that they would be able to obtain the documents without the permission of the experts. However, Dr. Bustin gave his permission.

From the appeals court decision:

Petitioners considered making such a re-quest from the UK court, but never did so. They contend that British counsel informed them that it was unlikely that the UK court would permit disclosure of the expert reports without the consent of the experts, which peti-tioners stated that they could not obtain. But Dr. Bustin did consent to the release of his reports. Once his consent for the release of his reports had been obtained by the government, there is no reason why the data underlying his reports could not also have been requested

Dr. Bustin’s testimony focused on a critical part of the argument used to claim that MMR causes autism: the claimed presence of measles virus in the bodies of autistics like Miss Cedillo. Dr. Bustin is arguably the worlds top expert on PCR, the method used by the Unigenetics Laboratory to test tissue samples for measles virus. Dr. Bustin discussed at length multiple reasons why the Unigenetics Laboratory results were not reliable.

A few points to be made here.

(1) The Cedillo’s attorneys presented an expert (Dr. Kennedy) to claim that the Unigenetics laboratory was reliable. Dr. Kennedy also had worked on the UK litigation and Dr. Kennedy’s underlying data were also under seal in that litigation. In other words, the Cedillo’s attorney’s were asking that the Special Master apply one standard to the government’s witness (rejecting his report without the underlying data) while applying the exact opposite standard to their own witness (Dr. Kennedy, who also didn’t have the underlying data).

(2) Michelle Cedillo was one of three “test cases” used to test the question of “general causation”. The other two children used as test cases did not have evidence of persistent measles virus in their bodies.

There is only one paper with reliable data showing the presence of measles virus in the tissues of an autistic child. This paper came out after the Cedillo hearing. The paper: Lack of Association between Measles Virus Vaccine and Autism with Enteropathy: A Case-Control Study. In that study they found measles virus in one autistic child, and in one non-autistic “control”. The Cedillo’s attorney’s argued that this was “significant new evidence” that showed the reliability of the Unigenetics laboratory.

I found it very odd that a paper titled “Lack of association between Mealses Virus Vaccine and Autism with Enteropathy” would be used as evidence for an association between measles virus vaccine and autism. But the argument is that this paper validates the Unigenetics laboratory as being able to produce reliable results. The argument is not valid, and the court did not agree with it. The work done by Unigenetics on Miss Cedillo was performed in 2002. The research on the paper was performed much later, after significant criticism was already levied against Unigenetics. Quite simply put, it is possible that Unigenetics “cleaned up its act” by the time of the recent paper.

(3) It was noted that the arguments about Dr. Bustin’s testimony were essentially moot, as the Special Master would have come to the same decision without his testimony.

(4) It was also noted that the appeals court had already decided on Dr. Bustin’s testimony in an appeal mounted by the attorneys for the Hazelhurst family (another of the Omnibus test cases).

The Cedillo’s attorneys further argued that it was unfair that evidence was brought in from the other “test case” hearings (Hazelhurst and Snyder). The appeals ruling noted that the Cedillo hearing was not a stand-alone proceeding. As a test case in an Omnibus Proceeding, evidence from all the test cases would be used to answer the question of general causation. I was surprised at the time of the appeal that the Cedillo’s attorneys were arguing that they were not actively monitoring the other test case hearings. What, in the end, is the point of an Omnibus Proceeding or a “petitioners steering committee” of the petitioners are not acting in some way as a group?

The Cedillo’s attorneys argued that the Special Master did not give enough weight to Miss Cedillo’s doctor, Dr. Krigsman, who stated that her condition was caused by MMR. The fact is that the Special Master rejected Dr. Krigsman’s argument with good cause:

He [the special master] also concluded that Dr. Krigsman’s opinion should be rejected because 1) he relied on the discredited Unigenetics testing in forming his opinion, 2) he misunderstood Michelle’s medical history and his testimony was inconsistent with her medical records, and 3) his conclusion that Michelle suffered from chronic gastrointestinal inflammation was substantially out-weighed by Michelle’s medical records and the testimony of the government’s experts.

The Cedillo’s attorneys argued that sufficient weight was not given to Miss Cedillo’s other physicians whom, they assert, associated her condition with the MMR vaccine:

Petitioners cited nine notations in Michelle’s records from eight individuals, including four physicians who treated Michelle and four non-physicians who exam-ined Michelle, in which the treating physicians mentioned her vaccinations, as support for the proposition that these individuals concluded that her autism was caused by her MMR vaccine.

The appeals court disagreed:

The Special Master did not err in failing to afford sig-nificant weight to the opinions of Michelle’s treating physicians. As the Special Master observed in his deci-sion, in seven of the nine notations, the physician was simply indicating an awareness of a temporal, not causal, relationship between the fever Michelle experienced after her MMR vaccine and the emergence of her autistic symptoms sometime thereafter. Initial Decision, slip op. at 100. In one of the other notations, the physician sim-ply noted that an exemption for Michelle from vaccination requirements could be arranged. In the other notation, the physician speculated that Michelle’s fevers might have caused her neurological abnormalities. However, he expressly stated that it would be “difficult to say” whether this was “a post-immunization phenomenon, or a separate occurrence.” Id. at 100. Thus, “none of the treating physicians concluded that the MMR vaccine caused Michelle’s autism.” Final Decision, 89 Fed. Cl. at 176. The Special Master

In the end, the appeals court decision takes on the arguments by the Cedillo’s attorneys point by point and refutes them. The closest the Cedillo’s attorneys got to making a point stick was in the case of Dr. Bustin’s testimony, which the appeals court stated:

We agree with petitioners that the government’s fail-ure to produce or even to request the documentation underlying Dr. Bustin’s reports is troubling, but we think that in the circumstances of this case, that failure does not justify reversal.

The fact of the matter is, the petitioners in general, and the Cedillo’s in specific, did not have a good case for MMR causing autism. The mechanism they proposed was not sound, the data they had was poor and incomplete and the experts speaking for the government were excellent and refuted the petitioner’s arguments. The Omnibus cases were, as the Special Masters noted, not close.

4 comment(s) for this post:

Science Mom:
2010-Sep-04
I found it very odd that a paper titled “Lack of association between Mealses Virus Vaccine and Autism with Enteropathy” would be used as evidence for an association between measles virus vaccine and autism. But the argument is that this paper validates the Unigenetics laboratory as being able to produce reliable results. The argument is not valid, and the court did not agree with it.
I, too cannot fathom the mental gymnastics that it takes to make this rationalisation. Furthermore, Unigenetics Ltd was a for-profit, private lab in Coombe Women's Hospital, Dublin. The Hornig et al. study took place at O'Leary's academic laboratory Trinity College Dublin. As far as I know, Unigenetics was out of business by the time that the Hornig et al. study even took place.
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Sullivan:
2010-Sep-05 Science Mom, the Hornig paper represented Dr. O'Leary's lab as the same one that tested Wakefield's samples-- "Ileal and cecal tissues from 25 children with autism and GI disturbances and 13 children with GI disturbances alone (controls) were evaluated by real-time reverse transcription (RT)-PCR for presence of MV RNA in three laboratories blinded to diagnosis, including one wherein the original findings suggesting a link between MV and ASD were reported." There was a conference call with reporters before the Hornig paper was published. David Kirby pushed the idea that this paper exhonerated the O'Leary lab in that call (about minute 47) http://www.mediafire.com/?ti2ojnymwsh He comes back at minute 55. Same question, same answer. As an aside--Kirby tends to lecture in his questions. For example, he misinterprets "regression" as "regression into autism". I believe the response in both cases was Ian Lipkin, but he suggested there could be problems with sample contamination before they got to Dr. O'Leary's laboratory. I think Dr. Lipkin was being generous. Let's consider the timeline-- O'Leary tests Wakefield's samples Bustin looks into O'Leary's lab and points out all the flaws which make the results unreliable. O'Leary works with the Hornig/Lipkin team on a followup study Let's do an analogy. Let's say I failed freshman chemistry. That summer, an extremely well respected chemistry professor looks over my notes, tests and homework and points out how my study methods were faulty. I take freshman chemistry again and I get an A. Does the A mean that the Fail I got was wrong? No. It just says I had the capability to do well and I failed to fulfill the promise. The fact that O'Leary's lab performed well for the Hornig test doesn't say that his original work wasn't fatally flawed. All this begs the question: did Michelle Cedillo's attorney's attempt to get Dr. O'Leary to present evidence or an expert report?
Science Mom:
2010-Sep-05
the Hornig paper represented Dr. O’Leary’s lab as the same one that tested Wakefield’s samples—
I missed that statement, but strange given that his affiliation on that publication is Trinity College Dublin and has a different physical location than Coombe. In any event, your analogy is spot on and it defies logic to make the rationalisation they are with the measles results.

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Damages awarded in the Poling case?

2010-09-03T00:44:31Z

A document has recently been posted the Court of Federal Claims website, describing an award in a vaccine injury case. The document is redacted, but the following paragraph indicates to me that this involves the case of Hannah Poling:

Respondent has conceded that petitioners are entitled to compensation due to the significant aggravation of Child’s pre-existing mitochondrial disorder based on an MMR vaccine Table presumptive injury of encephalopathy, which eventually manifested as a chronic encephalopathy with features of autism spectrum disorder and a complex partial seizure disorder as a sequela.

The amount involves 4 parts: (1) a payment of about US$1.5M for life care, future earnings and pain-and-suffering, (2) a lump sum payment of about US$140,000 for past unreimbursable expenses, (3) a lump sum payment of about $7,800 to cover a medicaid lien and (4) an undisclosed amount to purchase an annuity to cover items in the life care plan.

The award amount seems larger than typical to me. I don’t put this out as a criticism. Rather the opposite. If we as a people are going to compensate those injured by vaccines, as we should, we should compensate highly. We can not fully compensate a person or a family for injury. For example, the cap on pain and suffering damages has not been increased in the roughly 25 years that the vaccine program has been in place.

It is not easy to write this piece, and I hesitate to publish it. Assuming this document refers to the Poling family, they chose to redact information.

I will end with this statement from the Special Master who wrote the decision:

Based on the persuasive factors supporting petitioner’s vaccine claim and respondent’s election not to challenge petitioner’s claim, the undersigned finds that petitioner is entitled to compensation under the Vaccine Program. Accordingly, a determination of damages is appropriate.

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Anne:
2010-Sep-03 According to the Special Master's decision, this child had "an MMR vaccine Table presumptive injury of encephalopathy." Given that, there is no reason why the case should have languished in court since its filing in 2002. It should have been taken out of the Omnibus proceeding and submitted for individual determination long ago. Although the cost of the annuity isn't disclosed, the annuity has to pay out more than $500,000 per year for life. This is a very generous award.
ANB:
2010-Sep-03 It is not easy to write this piece, and I hesitate to publish it. Assuming this document refers to the Poling family, they chose to redact information. The Polings relinquished any claim to privacy when they included their minor daughter in a coast-to-coast anti-vaccine media blitz.
Science Mom:
2010-Sep-03
Given that, there is no reason why the case should have languished in court since its filing in 2002. It should have been taken out of the Omnibus proceeding and submitted for individual determination long ago.
@ Anne, that, I believe would have been the responsibility of the Poling's attorneys. If I recall correctly, Hannah Poling was considered as a test case at some point.
Sullivan:
2010-Sep-03 Science Mom, Hannah Poling was one of the original test cases for the Thimerosal portion of the Omnibus Autism Proceeding. She was removed as a test case when the government conceded her case.

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A reminder for neurodiversity

2010-09-02T12:14:21Z

Its been awhile since I blogged about neurodiversity and why it matters to me as a concept. Two recent events in my own life has made me more aware of that than usual.

In the first event, which concerns me directly, I have had to have a change in the medication I take that helps me regulate the manic depression (bipolar) I am diagnosed with. Nobody knows why I need to adjust my medication, only that it needs adjusting and so I shall shortly have Lamotrigine added to the medication regime I have to take.

How does that remind me about neurodiversity? It reminds me that the basic tenets of neurodiversity – respect for the individual differences those with different neurological makeups have – are my best way of being able to move forward in this world. More on this later.

In the second event, which occurred to some of my new family two days ago, myself, my partner and her two daughters – of whom the eldest (she is 4) is autistic – were shopping. Lily began to have a meltdown, a not unknown event in supermarkets for her and one for which we have a carefully worked out strategy. However, this time our strategy was rudely interrupted when a young woman began to shake her head, gawp openly at Lily and make tutting noises. She obviously felt Lily was a naughty child, rather than an autie child.

My partner and I decided that we had had enough of people judging Lily and so remonstrated with this woman. We both explained that Lily was autistic and unable at the age of four to regulate herself in high impact environments but we had to eat and anyway why should we exclude Lily from coming out with us as a family?

The woman waved her hand at us both in a casual dismissal and said we weren’t ‘controlling’ her properly. I smiled through gritted teeth and asked her what she knew about autism. She refused to answer. I asked her again and she walked off with another casual wave of dismissal. My partner’s by now angry shout of ‘shes autistic and a little girl, she can’t help herself’ following her down the aisle.

Of course, this isn’t the first time either one of us have been exposed to such ignorance and I doubt it will be the last. I’m also sure that many parents and autistic people reading this will be familiar with ‘the look’ that can come from such ignorant people who believe they have a divine right to judge others. But it again reminded me of neurodiversity and why I believe in its most basic tenet.

My partner said to me later that what had upset her so much was that Lily (and you can substitute her name for your own or your child’s) would be – to a certain degree either a lot or some – be dependant on the good will of society as she grew up.

People like the woman in Sainsburys are the ‘anti-neurodiversity’. They believe we can and should judge immediately, based on no other evidence than what we see and hear right in front of us. To me, neurodiversity should sit and think, consider the possibilities and act accordingly, based on a desire to help society in the belief that society should do the same for us.

By specifying a desire to include those with differing neurological disorders/disabilities/differences, neurodiversity helps me to feel secure in the world. It also means that I can feel secure in the world my children will inherit.

26 comment(s) for this post:

TLPG:
2010-Sep-02 Oh that makes me so bloody mad!! If I'd seen that I would have blocked the woman concerned and told her to go back to you and your partner, Kev, and apologise. If she refused I would have told her outright that she was "a bigoted little witch who needs the check what year it is on the calendar! It's 2010, not 1950!" Nice reminder, Kev. I did a page on my new blog on the general subject if you're interested. http://philgluyas.wordpress.com
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Val:
2010-Sep-02 You wrote - "My partner said to me later that what had upset her so much was that Lily (and you can substitute her name for your own or your child’s) would be – to a certain degree either a lot or some – be dependant on the good will of society as she grew up." Absolutely correct. Families of autism affected individuals are counting on a little charity and grace with regard to how their loved ones are received in public. Even if the woman you stood down seemed at ease with her behavior while in your presence, I am pretty sure she lost sleep over HER behavior...being so judgmental and not having complete knowledge with regard to what she was witnessing. I have had some battles on my own daughter's behalf - in similar circumstance.
vmgillen:
2010-Sep-02 The woman was a jerk... and her response was not specific to ASD. When faced with that sort of behaviour my response is fully dependent on what I had for breakfast, whether I slept well the night before, etc... raising my extra-ordinary children on a military base led to us constantly faving this sort of thing - and ultimately led to a forced discharge for my husband. And that was not only autism ("can't you control that kid") but also my oldest, with paraplegia ("soldiers will be reminded that they could face paraplegia if wounded") All in all, this crap is also part of neurodiversity. But, I'd like to see the word "retarded" remain in active use: social retardation is a horrible affliction!
Astrid:
2010-Sep-02 Great post, Kev. I am sorry you and your family had to face such bigoted bullcrap. In my opinion, it doesn't even need to be explained that someone is autistici in order to explain the behavior, since that is none of a stranger's business. If a child is disruptive and the parents are doing something "wrong" about it, in your opinion, stop and think rather than judge, indeed.

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MMR vaccine damaged man

2010-08-30T19:27:02Z

Jackie Fletcher is well known to many – she routinely insists the MMR jab is dangerous despite reams of evidence to the contrary. However, a panel in the UK has found that her son, Robert, was damaged by the MMR vaccine he was administered.

I nearly didn’t blog about this. Why? Well, this blogs predominant focus is autism and Robert did not and does not have autism. The panel in this case found that the MMR caused seizures and mental retardation. Its difficult therefore to get a ‘hook’ into this story. As Mike Fitzpatrick is quoted as saying in the Daily Mail:

It is a very important principle that parents should be compensated in cases of this kind…

and he’s absolutely right. Thats why the Vaccine Damage Payment Unit exists in the UK.

Like any other form of medical procedure, vaccines are not 100% safe. I can’t recall anyone anywhere ever making that claim. What they are however, is very safe indeed. Robert Fletcher was injured and has been compensated. I might even agree with his mum that the amount is ‘derisory’. Robert will need full time care all of his life and £90,000 ($140,000) is nowhere near enough. However, campaigners uninterested in Robert’s day to day needs say that:

Campaigner Polly Tommey, who edits the magazine The Autism File and believes her son Billy is autistic because of MMR, says: ‘This is fantastic news. Now doctors can’t tell me that the MMR is safe.

‘This payout is evidence that it is not safe. It’s interesting that they will look at epilepsy and not autism, and you have to ask why.

‘Is it because the compensation would be billions?’

I very much doubt that any doctor, anywhere has ever told any recipient anywhere that any vaccine is 100% safe. If they did, they were liars.

However, this payment, far from being ‘evidence that it is not safe’ (a bizarre claim) is more like a recognition that the Vaccine Damage Payment system is working as it should. A man was vaccine damaged and was compensated as a result.

As for the claim that ‘they’ will not look at autism, this is simply incorrect. Robert, does not have autism and therefore it would be impossible in this case to look at autism. I would imagine if someone with autism was adjudged to be damaged by their MMR vaccine, Ms Tommey might have a point. As that has not happened, she does not. This kind of fear-mongering by the likes of Tommey is no doubt why the panel made the clear point:

We would stress that this decision is fact-specific and it should not be seen as a precedent for any other case.

In particular, it has no relevance to the issue… as to whether there is a link between the MMR vaccine and autism.

And Fletcher goes on to claim:

Claims for autism are not considered. There are 120 MMR cases waiting to be heard, but none is for autism…

So why should that be? Why is autism apparently ‘excluded’?

Its because the science – both epidemiological and clinical clearly shows that MMR does not cause autism. And that is not the odd paper here and there. We are talking about overwhelming science that shows that the whole autism/MMR connection is simply false and was built up by one man too stupid to admit his clear errors and a mass media keen to build sensation out of this same man’s ego.

Tommey, Fletcher and all others who believe that there’s some kind of conspiracy afoot to block autism from MMR causation cases need to understand the science involved and that unless some new science is forthcoming that establishes MMR as a causative agent in regards to autism then the simple fact of applying for compensation listing the MMR as a cause of their child’s autism is always going to be an immediate strikeout.

Campaigners need to start seeing this event for what it really is – compensation for a vaccine damaged man – and not as what it isn’t – evidence that MMR is inherently unsafe or that theres some mysterious conspiracy to prevent autism from being linked to MMR.

14 comment(s) for this post:

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brian:
2010-Aug-30 Hi, Kev— I know nothing of Robert Fletcher’s case beyond the information contained in the recent news accounts, so perhaps you can fill me in on one important point: Why were the Fletcher’s compensated for what may well be a de novo mutation in a gene associated with neuronal voltage-gated sodium transport? What did I miss? Other families have apparently been compensated in similar cases involving pertussis vaccine rather than MMR, but that was before it became clear that febrile convulsions and the development of some forms of epilepsy in childhood were both related to mutations in genes including SCN1A. Supposed injuries associated with vaccination against pertussis frequently involved the onset of seizures during the fever spike that occurs a day or two following vaccination, but retrospective studies showed that the problems actually resulted from mutation rather than from vaccination, and that the clinical course is unchanged whether or not seizure onset happened to be temporally associated with vaccination. Febrile seizures following the receipt of MMR typically occur about ten days following vaccination—just as in Robert’s case. Childhood epilepsies caused by SCN1A mutations frequently produce mental retardation and motor problems, just as in Robert’s case. I agree that the it is important that the vaccine compensation system must compensate families when it seems more likely than not that there was a vaccine injury. I don’t understand how that could be true in Robert’s case unless the likely explanation was ruled out by genetic tests, and if such tests ruled out this likely cause, then I don’t understand how Professor Lingam, one of the three-member panel that heard the case, could have said that Robert was “genetically predisposed to epilepsy and that the vaccination triggered it rather than caused it. Robert would have developed epilepsy in any event, even if he had not had the vaccination.” So, was evidence presented that demonstrated that Robert’s case was unlike those cases of alleged vaccine injury that were in fact developmental problems caused by mutations? The alternative explanation, as suggested in some news articles, was that the panel disregarded the critical scientific evidence and concluded: “The seizure occurred ten days after the vaccination. In our view, this cannot be put down to coincidence. It is this temporal association that provides the link. It is this that has shown on the balance of probabilities that the vaccination triggered the epilepsy.” But that wouldn’t make sense.
Visitor:
2010-Aug-30 This headline should be in quotes. That Robert Fletcher was injured by MMR is only the opinion of one of two doctors. This does not establish the fact.
Neuroskeptic:
2010-Aug-31 Brian: You'd have to look at the standards of evidence that the panel were using. "on the balance of probabilities that the vaccination triggered the epilepsy." is not the same as 'beyond reasonable doubt' for example. It's also possible that they were operating on the rule that even if the vaccine merely triggered epilepsy which would probably have happened anyway, they should compensate, because otherwise she won't get any compensation, and she needs the money (they're human too).
Astrid:
2010-Aug-31 I agree with Neuroskeptic. Courts work with probabilities of 51 to 49%. It is more likely than not that Mr. Fletscher was damaged by the vaccine.

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Cedillo appeal denied

2010-08-27T21:02:44Z

In conclusion, we have carefully reviewed the decision of the Special Master and we find that it is rationally supported by the evidence, well-articulated, and reason-able. We therefore affirm the denial of the Cedillos’ petition for compensation.

Nobody should take any pleasure from this decision. If the Cedillo’s happen to read this I would urge them to step away from the quackery. It is doing nobody any good.

More details here.

11 comment(s) for this post:

Broken Link:
2010-Aug-28 Kev, I do take pleasure from this decision. However, my heart goes out to the Cedillos who have been played in all this, exposing their family history to the public on behalf of all the other petitioners. The Cedillos are surrounded by those who would use them to advance a false agenda. I take pleasure because it is one more nail in the coffin of the vaccines-cause-autism movement. They cannot claim that Michelle would have won except for x,y,z. They tried their best, and the facts are not on their side. If this ruling can prevent even one newly diagnosed child from being subjected to all the biomedical woo that surrounds the myth of treating vaccine-caused-autism, that is a good thing.
brian:
2010-Aug-28 The decision is here: http://www.cafc.uscourts.gov/images/stories/opinions-orders/10-5004.pdf
C. S. Wyatt:
2010-Aug-28 A detailed ruling, I just finished reading it. Every argument I could imagine was tried, and in the end the Special Master seems to have made minor errors but the overall decision was sound and logical. Even what might be called "errors" were not legal mistakes, since the regular rules of evidence don't apply to the Vaccine Court. I'm glad the decision was so detailed. Of course, it won't change any opinions. Conspiracy believers will add this ruling to the evidence of a cover-up…
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2010-Aug-29 [...] This post was mentioned on Twitter by Kev, Kev, kristina chew, Squillo, Catherina+ScienceMom and others. Catherina+ScienceMom said: Cedillo appeal denied http://t.co/2vjKqqp via @kevleitch [...]
stanley seigler:
2010-Aug-29 a more important decision... This is a very far-ranging decision that clearly articulates the standards and opens the door to recover damages...the decision is important because it recognizes that the parents can seek recovery under the federal Rehabilitation Act when their kids are the victims of *deliberate indifference* by the department [USA-CA Dept of Developmental services] in failing to provide the services. [ref say] COMMENT Hope springs...thanks USA 9th circuit court panel... JFK Remarks upon signing the Maternal and Child Health and Mental Retardation Planning Bill into 10/24/63: *We can say with some assurance that, although children may be the victims of fate, they will not be the victims of our neglect.* SOME ASSURANCE not enough...some 50 years later, our children, friends, not only victims of neglect but victims of deliberate indifference. stanley seigler Ref xxxxxxxxxxxxxx Suit against state over autism case is reinstated By Ken Kobayashi POSTED: 01:30 a.m. HST, Aug 27, 2010 A federal appeals court reinstated a lawsuit yesterday by the parents of two autistic daughters seeking money for what they say was the Department of Education's failure to provide them with appropriate special-education services. The family's lawyers said the decision is important because it recognizes that the parents can seek recovery under the federal Rehabilitation Act when their kids are the victims of "deliberate indifference" by the department in failing to provide the services. "This is a very far-ranging decision that clearly articulates the standards and opens the door to recover damages," said Susan Dorsey, managing attorney of the Levin Education Access Project. State attorneys could not immediately be reached for comment. The unanimous decision by a three-judge panel of the 9th U.S. Circuit Court of Appeals overturned a decision by visiting U.S. District Judge Manuel Real, who had granted the state's request to throw out the lawsuit. Hawaii's federal appeals Judge Richard Clifton was on the panel. The lawsuit filed by the parents alleges that the department failed to provide the two children with services as a result of "deliberate indifference" during the girls' formative years in the 1990s. The girls, now teenagers, were diagnosed as autistic when they were 2 and 3, can hardly speak and have limited ability to interact with people, according to the opinion. The state later provided services, but the family contends the girls would have made much more progress if they had been provided the services sooner. Attorney Michael Livingston, who represented the family along with lead attorney Stanley Levin, said the girls were permanently damaged as a result of the "lost opportunity." Dorsey said the case involves "substantial damages" for the girls, who he said were "stripped of any opportunity" to be independent and will have to be cared for for the rest of their lives. A federal appeals court reinstated a lawsuit yesterday by the parents of two autistic daughters seeking money for what they say was the Department of Education's failure to provide them with appropriate special-education services. The family's lawyers said the decision is important because it recognizes that the parents can seek recovery under the federal Rehabilitation Act when their kids are the victims of "deliberate indifference" by the department in failing to provide the services. "This is a very far-ranging decision that clearly articulates the standards and opens the door to recover damages," said Susan Dorsey, managing attorney of the Levin Education Access Project. State attorneys could not immediately be reached for comment. The unanimous decision by a three-judge panel of the 9th U.S. Circuit Court of Appeals overturned a decision by visiting U.S. District Judge Manuel Real, who had granted the state's request to throw out the lawsuit. Hawaii's federal appeals Judge Richard Clifton was on the panel. The lawsuit filed by the parents alleges that the department failed to provide the two children with services as a result of "deliberate indifference" during the girls' formative years in the 1990s. The girls, now teenagers, were diagnosed as autistic when they were 2 and 3, can hardly speak and have limited ability to interact with people, according to the opinion. The state later provided services, but the family contends the girls would have made much more progress if they had been provided the services sooner. Attorney Michael Livingston, who represented the family along with lead attorney Stanley Levin, said the girls were permanently damaged as a result of the "lost opportunity." Dorsey said the case involves "substantial damages" for the girls, who he said were "stripped of any opportunity" to be independent and will have to be cared for for the rest of their lives. Read more: http://www.staradvertiser.com/news/hawaiinews/20100827_Suit_against_state_over_autism_case_is_reinstated.html#ixzz0xuojc2Cq

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Quick Q&A with APC study lead author

2010-08-26T18:08:47Z

I recently blogged about a study that linked APC dysfunction with autism and learning disability. Two questions interested me so I wrote to lead author Michele Jacob to ask them.

Hi Dr Jacob,

My name is Kevin Leitch, I own and edit a popular blog on autism and am also father to an autistic daughter.

I found your recent study very interesting and had questions that I’d like to ask you and hopefully you’d give me permission to discuss your answer on the blog?

My questions are –
1) is there any set of circumstance in which APC dysfunction can occur ‘in the wild’ e.g. could a child be given something that then ‘turned’ them into an autistic person by negatively affecting APC function?

2) If there is , is there a way that this dysfunction might be reversed or at least modified somewhat?

My own take on this is that the answer to both questions would be ‘no’ but I have no understanding of APC function and a laymans understanding of genes in general.

Many thanks in advance for both your fascinating study and any time you can offer me in answering my questions.

She responded:

Hi Kevin,

Thanks for discussing our work in your blog. I am delighted our work interests you.

I think the short answer to both questions is no. The only way to cause APC dysfunction is via gene mutations. It’s function can be modified, enhanced or reduced, by signaling events in cells, but these changes are not large enough to have effects on behavior.

Loss of function mutations in the APC gene are inherited or occur sporadically. The symptoms associated with the sporadic mutations will depend on the cell type. APC is present in all cells of the body and it has several functions that are critical at different stages of development.

My lab is continuing to define the role of APC in the nervous system. Our goal is to define changes caused by APC dysfunction that lead to learning deficits and autistic-like behaviors.

Hope this information clears up your questions.

My best regards to you and your daughter.

So why did I ask these questions? Well, its been my experience that the antivax crowd leap on any science that seems to have an outcome that is linked to autism, to either trash it or link vaccines to it. I’m hoping Dr Jacob’s answers lead away from the possibility of linking autism to vaccines via APC dysfunction.

3 comment(s) for this post:

passionlessDrone:
2010-Aug-26 Hi Kev - I think we want to apply a healthy dose of skepticism before we start thinking that complete loss of function to the APC gene is contributing to a meaningful number of people with autism. I like very much the synapse angle, but there are a bazillion ways to get that process off kilter that don't involve wholesale loss of function deletions that are very highly associated with things we ought to be noticing in our autism population; for example, a sky high rate of colon cancer. http://atlasgeneticsoncology.org/Genes/APC118.html
Germline mutations of APC cause a spectrum of diseases under the broad category of familial adenomatous polyposis (FAP).

Without treatment, the life expectancy is in the early 40s due to colon cancer. Treatment consists of regular screening, with polypectomy of large lesions. Due to the large number of polyps, eventual complete colectomy with or without proctosigmoidectomy is needed.
Knockout mice are great tools for studying big changes, but I get a sinking feeling anytime I get told that gradient between the binary of on and off isn't important. I just am not sure we are clever enough to understand that yet. - pD
Barbara:
2010-Aug-26 "It’s function" Did she really write that? Really? Or is this lost in transcription?
Kev:
2010-Aug-27 She did :) but I think she was in something of a hurry ;) pD - agreed, but its been my experience that a certain type of anti-vaxxer will seize on anything. The AoA brigade are condoning stem cell treatment for autism for example.

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Autism and learning disabilities connected to APC protein

2010-09-03T18:02:26Z

‘What the hell does that mean?’ I hear you cry.

OK, so the way I understand it, APC is a protien which plays an important role in helping synapses grow properly. If synapses – which are the bits that transfer data from neuron to neuron – don’t grow properly then data doesn’t get passed properly. This particular protien – APC - is responsible for the synapse function for learning and memory.

In the in vivo study, the team blocked APC function and found that synaptic levels of the cell adhesion proteins neuroligin and neurexin dropped considerably. Without normal levels of these proteins, synapses were less mature both structurally and functionally. Mutations in the genes for neuroligin and neurexin are associated with autism in humans, but until now, little was known about the mechanisms responsible for localizing these proteins at the synapse. “Our laboratory study is the first to show that APC is needed to recruit neuroligin and neurexin to the synapse. This finding provides new insights into the mechanisms required for proper synapse function as well as molecular changes at the synapse that likely contribute to autistic behaviors and learning deficits in people with APC loss of function gene mutations,” said [lead author, Michele H. ] Jacob.

Source. Insert mine.

Right, so – again as I understand it – when the authors blocked APC function, they found that levels of the proteins neuroligin and neurexin dropped. So what…? Well, without these two proteins at normal levels, synapses grew improperly. So what…? Turns out that scientists already know that mutuations in the genes for neuroligin and neurexin are associated with autism. Aha.

2 comment(s) for this post:

Ian MacGregor:
2010-Aug-25 There's been a lot about intellectual disability and autism and whether they are related. This article as described here- I have yet to read it- is more proof that ID is a common, but not universal symptom of autism. This is not to say that everyone with intellectual disability is autistic, but that the processes which lead to autism very often lead to intellectual disability as well. My theory is that those who suffer from the autism related ID, have had more of their synapses affected. In other words their autism is indeed more severe.
passionlessDrone:
2010-Aug-25 Hi Kev - A recent review of the participation problematic synapses and neurologic disease can be found here. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2857788/?tool=pubmed It just goes to show you how much we have to learn. - pD

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Review of the Introduction of Age of Autism – the book.

2010-08-23T20:25:53Z

So begins the Olmsted/Blaxill upcoming book ‘Age of Autism’.

...instead of taking Kanner’s word for it, [we decided] to learn about these previously anonymous families ourselves. We took clues from his extensive case descriptions and started uncovering the identities of the original families. Time and again, we connected the occupations of the parents to plausible toxic exposures and especially to a new mercury compound first used in the 1930s as a disinfectant for seeds, a treatment for lumber, and a preservative in vaccines. Yes, the parents’ professions were clues— but not to their obsessions or their marriages or their parenting or their genetic oddities; instead, they pointed to a strikingly consistent pattern of familial exposures to the same toxic substance.

(emphasis authors, inserts mine)

This is the paragraph that sets the authors hypothesis out. When we look at it carefully, we can see exactly what its purpose is – its purpose is to fit a set of preconceived ideas that revolve around one central disproven hypothesis – that mercury in vaccines (thiomersal/thimerosal) causes autism.

I haven’t yet read the rest of the book but I’m pretty sure what I’m going to find. To talk about that now would just be conjecture however, so lets stick to what we have here.

According to Olmsted and Blaxill, syphilis treatment, hysteria, mental illness and a variety of modern illnesses are all caused by mercury. I’m very much looking forward to reading this section too. Olmsted & Blaxill use Pink disease (a definite form of mercury poisoning which looks nothing like autism to ‘justify’ the inclusion of these illnesses in the Introduction.

Blaxill and Omsted detail how they went on to meet “Donald T.” one of Kanner’s original cases:

By any mea sure, he has fared astonishingly well. President of his college fraternity and later the Forest Kiwanis Club, a pillar of his Presbyterian church, he had a long career at the local bank, plays a competitive game of golf, and regularly travels the world. We learned how “Donald T.” went from being the first unmistakable case of autism to the first unmistakable case of recovery.

So on one hand we have the doom and gloom of Pink disease (a foreshadow of autism according to Blaxill & Olmsted) which killed hundreds and then actual autism which doesn’t seem that bad. I’ll be very interested to see how Blaxill & Olmsted narrate Donald T.’s ‘recovery’...or could it have been that Donald T. was in fact one of the first cases of autism who also either moved ‘off the spectrum’ (as a certain percentage of autistic people do) or…y’know…he simply progressed as he got older. My guess is that Blaxill & Olmsted will reveal that Donald T. had some kind of miraculous exposure to a chelating agent or multi vitamins or some form of extreme biomed. Lets see.

The whole Introduction is about 6,000 words long. I can’t possibly attempt to review the whole thing and I won’t attempt to review the whole book either. These are the sections of the Intro that caught my eye particularly. Maybe others who have access to the Intro will tackle more. One thing you can be sure of, LBRB will be here to catch and expose the errors.

11 comment(s) for this post:

brian:
2010-Aug-24 Olmsted and Blaxill wrote: “Yes, the parents’ professions were clues— but not to their obsessions or their marriages or their parenting or their genetic oddities; instead, they pointed to a strikingly consistent pattern of familial exposures to the same toxic substance.” Of course, Olmsted also wrote: “Laugh me off if you want, but I have spent a lot of time looking for plausible links between parents’ occupations and autism in their children, and I know them when I see them.” He also wrote: “I strongly suspect Kathleen Seidel was exposed to thimerosal occupationally.” I suppose those plausible links(“I know them when I see them”) include occupational exposure to thimerosal such as that associated with Seidel’s work as a secretary: http://leftbrainrightbrain.co.uk/2008/09/dan-olmsted-suffers-by-comparison/ I suppose the rest of the book is informed by similarly rigorous scholarship.
Roger Kulp:
2010-Aug-24 Olmstead and his ilk are just part of the bigger antiscience picture,especially in the US. http://www.kentucky.com/2010/08/23/1399101/commentary-science-we-dont-need.html While I don't know about Olmstead personally,it's no coincidence that the antivaccine movement is rife with both religious fundamentalists,and Alex Jones-style right wing conspiracy mongers.
Barbara:
2010-Aug-24 In Kanner's original study, out of the 11 children, 2 were lost track of/died and 3 didn't go into institutions earlyish in life, and did OK, including Don. It's important, because most of the parents who brought their children to Kanner were trying to get them institutionalised. On a later follow-up of 96 cases, 12 (nine reported, the first 3 included, one lost track of, 2 had died including a brilliant physics student in a traffic accident, so maybe 13 or 14 (the one lost track of had an IQ of 140) we could maybe say at least 14 were doing/would have done OK. That's a higher 'recovery' (they were still on the spectrum but how would Olmsted and Blaxill recognise that?) than was achieved by any of the Lovaas replication studies.
stanley seigler:
2010-Aug-24 [barbara say]...a higher ‘recovery’ than was achieved by any of the Lovaas replication studies. COMMENT just more on lovaas: WWC found the Lovaas Model to have potentially positive effects for cognitive development for children with disabilities and no discernible effects for communication/language competencies, social-emotional development/behavior, and functional abilities. http://ies.ed.gov/ncee/wwc/reports/ece_cd/lovaas_model/ stanley seigler
stanley seigler:
2010-Aug-25 [Roger Kulp say]...his ilk, the antiscience picture, the antivaccine movement, religious fundamentalists, right wing conspiracy mongers. left out promotional science...mentioned in ms dawson's blog and which does as much harm as the above mentioned ilk. thanks for the very informative article...eg, "the evolution-free universe clocks in at 7,000 years"...btw world was created on 18Mar3952 BC... not sure if 18mar was the first or sixth day...it was a wednesday...so He/She rested on thu or tue...not sunday. stanley seigler

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We will support your foundations

2010-08-23T20:15:06Z

I read a terrible, terrifying blog post post yesterday from Kim Stagliano on the Huffington Post. In it she describes how her daughter has suffered abuse at the hands of a support worker. The story is also coverered by the Connecticut Times.

Police said the girl’s parents were trying to figure out how their non-verbal daughter kept getting bruises and sprained fingers on her right hand when on May 19 they received a call from the nurse at Frenchtown Elementary School that their daughter had arrived at school that morning crying hysterically. The parents then demanded to see the video from their daughter’s school bus.

That video, which also had audio, showed Davila grabbing the girl’s hands and the girl then crying out in pain.

Police said they then obtained DVD copies of the bus videos for April 27, April 29 and May 19. On the 27th and the 19th the driver of the bus was Davila’s mother.

Police said the April 27 video shows Davila, during the bus ride from the school to the girl’s home, putting her hands in the area of the girl’s hands. With each movement the girl’s cries get louder, police said.

This is one of my darkest fears. That my non-verbal daughter or my step-daughter, both autistic, should suffer abuse and not have the language skills to communicate their ordeal. Or even if they did have language skills that they were too terrified to speak out.

On this issue we – the whole autism community can easily stand as one. Whats happened to Kim Stagliano’s daughter is beyond appalling. She writes on the HuffPo of shaking the foundations of those who have hurt, or allowed to hurt, her daughter. I fully agree with her statement and as the title of this blog post implies, I will support her foundations in whatever way I can.

23 comment(s) for this post:

Adelaide:
2010-Aug-23 That is indeed a big fear. Thank you, Left Brain/Right Brain.
kabie:
2010-Aug-23 It is awful. This man must have known that there was cctv and he didn't care if he was filmed, or perhaps thought that no-one would care enough to do anything about it. I feel that abusers like this continue because of the general feeling in the wider community and attitudes to those that they abuse. Disabled people are generally treated as lower class citizens who don't have the same human rights as others and this is a symptom of that. Look at the way that the cost of autistic people in £ or $ per head is often cited as being a reason to eradicate us; this is the sort of abuse that arises out of that : being told that we are a bunch of subhuman "useless eaters" doesn't instill a sense of professionalism or a feeling of the need for equality when we need support from others. Even in the proposal for the new Autism (Scotland) bill NAS bang on about how expensive we are; there's a price on all of our heads.
lilandtedsmum:
2010-Aug-23 This is the kind of thing that haunts me. All children are vulnerable but our children even more so. When we send our children to school we are trusting others to nurture and care for our most prized posessions. This abuse of that trust is disgraceful and I can only begin to imagine how Kim and other parents in her position must feel.
Julian Frost:
2010-Aug-23 This is terrible. If this is true I hope the "caregiver" is convicted of assault and banned from working with any vulnerable individuals.
BTDT:
2010-Aug-23 "This was not Davila's first brush with the law. In April she was arrested and charged with sixth-degree larceny after police said she was stopped pushing a carriage loaded with more than $400 in merchandise out of the Target store in Trumbull without paying for it." Why was this person allowed anywhere near a bus for children with special needs?

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LBRB on Facebook

2010-09-03T19:07:50Z

I finally got around to creating a ‘Fan’ page on Facebook for LBRB as an alternative to the Networked Blog. I do understand theres an unofficial page floating around but please consider this the official LBRB page.

Also please take the time to click the ‘like’ box (below on the right) to add to the number of fans LBRB has (currently…erm…1…me)

1 comment(s) for this post:

Dawn:
2010-Aug-24 I will join as soon as I get home from work (that's my FB time)

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