MMR vaccine damaged man

30 Aug

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.

Cedillo appeal denied

27 Aug

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.

Quick Q&A with APC study lead author

26 Aug

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.

Autism and learning disabilities connected to APC protein

25 Aug

‘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.

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

23 Aug

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.

We will support your foundations

23 Aug

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.

LBRB on Facebook

22 Aug

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)

Eli Lilly halts two clinical trials of an experimental Alzheimer’s treatment

19 Aug

This has been reported in a number of places, including the New York Times in their article Lilly Stops Alzheimer’s Drug Trials.

From the NY Times:

Eli Lilly halted two late-stage clinical trials of an experimental Alzheimer’s treatment on Tuesday, representing a setback to one leading theory on treating the degenerative disease and a new blow to Lilly’s business prospects.

One defining feature of Alzheimers disease is the presence of amyloid plaque in the brain. The now-halted clinical trial was for a drug which reduces this plaque.

The basic idea is fairly straightforward: if plaque is present in the brains of those with Alzheimer’s, removing the plaque may help reduce or reverse the symptoms. Instead, researchers were finding that the drug was making symptoms worse. Again from the times:

The company said patients who had taken the drug, intended to reduce plaque in the brain, actually showed worse cognitive functioning and less ability to perform daily living tasks than patients who had taken a placebo.

Why bring this up on an autism blog? Because this trial gives a good example of why I am very concerned about the use of untested therapies on autistics. It isn’t because of some objection to a “cure”. There is no existing autism cure. There is no autism cure proposed or in any stage of a clinical trial. While there is some very good and important discussions about any potential cure, it is for the present a hypothetical discussion. No, it isn’t the cure debate which drives me. It is safety. Plain and simple.

Consider autism therapies (both alternative and off-label) from a viewpoint of safety for the moment with the lessons learned from the Alzheimer’s trial.

Clinical trials are all about safety and efficacy. Is the therapy (drug) safe? Does it work? Before a clinical trial is even started, there has to be some reason to believe that the therapy would be safe and effective. Researchers have to ask the question, “what will this do?” In the Eli Lilly Alzheimer’s trial, they had reason to believe that the drug would reduce amyloid plaque. They had (I assume) some earlier trials to prove the drug reached some level of safety. With that in hand, Eli Lilly went forward to large-scale testing with people and they found that, at least for their test group (people with somewhat advanced Alzheimer’s disease), the drug was harmful.

From the NY Times story:

Lilly’s drug was intended to reduce production of so-called amyloid beta plaques in the brain by inhibiting the activity of an enzyme called gamma secretase.

Dr. Siemers of Lilly said the failed trials might indicate that too much reduction in amyloid beta unexpectedly harms cognitive functions, or it may be that the problems arose from the drug’s effect on some 20 other proteins.

Unintended and unforeseen consequences.

Consider alternative therapies being applied to autistics. For example, consider anti-inflammatory drugs. These are existing drugs used off-label, so some safety data are available. There is evidence of inflammation in the brains for some autistics, so why not treat it?

Because we don’t understand why there is inflammation in the brains of autistics. Because of that, we don’t know if there are any unintended consequences of anti-inflammatory therapies. From a story last year in the Chicago Tribune, this section discussing the team from Johns Hopkins/Kennedy Krieger which first published on neuroinflammation in autistics:

“THERE IS NO indication for using anti-inflammatory medications in patients with autism,” the [Johns Hopkins] team wrote.

Meddling with neuroinflammation could actually be a terrible mistake, said co-author Dr. Andrew Zimmerman, director of medical research at the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore.

“It may actually be an attempt of the brain to repair itself,” said Zimmerman, a pediatric neurologist. Suppressing the immune response “could be doing harm.”

There are other classes of alternative therapies used in autism. Therapies which most likely are doing nothing beyond the placebo effect are in one class. For example, homeopathy. I don’t spend a lot of time writing about homeopathy. In fact, I don’t know if I have blogged about it at all. Even though it is bad science, it isn’t really dangerous. Another class of alternative therapies are those based in really bad science and which carry the potential of harm. Lupron comes readily to mind. Lupron therapy is based on two levels of very bad science. First, that autism is caused by mercury poisoning. Second, that reducing testosterone in the body will aid it in eliminating mercury. Lupron has been through clinical trials (not for autism) demostrating some level of safety, there are serious known side effects. Worse, the manner in which it is used in autistic children is very problematic–delaying puberty.

Back to the Alzheimer’s trial–I actually welcome the trial itself. I consider those who undertake clinical trials to be very brave individuals. I for one hope there are effective therapies for Alzheimer’s and other forms of dementia soon. It is a great fear for most, if not all, of us that we spend the last years of our lives with dementia. For the parent of a disabled child, this fear is only compounded. The thought of spending my last years draining resources I would rather leave to my child is one of the worst futures I can imagine.

Disturbances in certain genes play a role in autism

19 Aug

OK, so not ‘new’ news. I want to look at this story’s opening as a kind of case-study into what binds and separates the autism community.

[researchers have]…found in a new study that autism can be partially explained by abnormalities in certain genes. The group’s results could, in the long run, pave the way for more appropriate treatments for autism.

Now, camp one, to which one could add the Age of Autism anti-vaxxers would snarl at the uselessness of this study. They ‘know’ that genes play little to no part in autism and that the real issue is that of vaccines.

Camp two, to which one could say shades into camp one and who you could add Harold Doherty to would bemoan the fact that yet another gene study had been done, would ignore the successes it has brought in terms of giving us more data and grump about how ‘the environment’ had been ignored.

Camp three, to which you could add Lisa Jo Rudy’s autism.about.com site would acknowledge that this was an interesting study but maybe ask valid questions about the context into which you could place this one single study. Knowing Lisa Jo she would also be interested in what exact therapies might be on offer as a result of this study.

Camp four, to which I would hope you could add LBRB and which possibly shades into camp three a little too, would be interested in the the story behind the science as well as the science itself, would hope to get an interview with one of the authors and would ask them what future science might ‘spin off’ from this study. Depending on the answers we might also editorialise a little on the need to be responsible with the science.

Just an interesting little game, of no import, as to how the community – itself a spectrum – is separated. Some say this is a bad thing and that we need unity. I disagree. I think we need diversity, as I do in most things. We even need an Age of Autism to play the token fool.

The autism ‘epidemic’ no more

17 Aug

OK, so its well known to LBRB readers that I don’t think its ever been scientifically established that there has been such a thing as an autism epidemic but even so, looking at why autism numbers have changed over a certain period of time – the period of time people believe is part of the ‘epidemic’ – should be a good way to determine what contributed to that time periods rise in autism.

So thats what Peter Bearman did. Summed up well in this weeks New Scientist, Bearman’s study offers the first look at what actually did cause the ‘epidemic’.

Better diagnosis
Diagnostic changes are the most important influence. After 1987, the definition of autism used in California was broadened several times. Bearman and his colleague Marissa King examined the medical records of around 7000 Californian children with autism and found that one in ten had initially been diagnosed with mental retardation. Extrapolated to the state as a whole, they estimate that this change in diagnosis created almost 5000 extra cases of autism between 1993 and 2005, or 26 per cent of the increase of recorded over that period.

Greater awareness
Social influence accounts for another big chunk of the overall increase. Parents are more aware of the disorder than they used to be, and so those whose children who have mild forms of autism have become more likely to seek out diagnosis.

Bearman and his colleague Ka-Yuet Liu quantified this effect. They first estimated how the chances of a child being diagnosed with autism increase if he or she lives close to a child that has already been diagnosed. They then plotted the addresses of children with and without autism in California to calculate the number of children who had grown up close to a child diagnosed with the condition. They were then able to calculate the fraction of extra cases that would have been diagnosed as a result of social interactions. They put this figure at 16 per cent.

Older parents
The final contribution to the rise in diagnoses comes from demographics. Couples in California are having children later in life, as they are in much of the rest of North America and Europe. That is pushing up autism rates, because autism is triggered by genetic mutations that older parents are more likely to pass on to their children.

Bearman and King calculated that these older parents are responsible for 11 per cent of the extra autism cases.

So these total 53% of the so-called ‘epidemic’. What about the missing 47%? Well, Professor Roy Grinker says:

Autism used to be highly stigmatised, in part because it was thought to be due to poor parenting. The removal of that stigma has made doctors and parents more willing to recognise the disease, which will have contributed to [some of] the extra cases…This and other social causes, together with uncertainty in the number of cases that can be attributed to the factors already studied by Bearman, could account for much or all of the unexplained half

But note Grinker doesn’t say it definitely does. This is because he knows as a careful scientist it hasn’t been looked at.

So what can we take from Bearman’s work? In my opinion we can take the fact that as soon as the questions regarding non-environmental causes were actually looked at and studied, there were numerical values that could be applied to their contribution. There are other non-environmental causes which Bearman didn’t look at which would probably be found to contribute to the other half.

What about the alleged environmental causes? It would not surprise me in the least if it were found that there were some. But as to what they are, the environmental lobby are still so hung up on vaccines they don’t seem to want to look at other possible environmental issues. Maybe its time they dropped the vaccine nonsense and got involved in some decent research. Just a thought.

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