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The Great Autism Rip-off

1 Jun

I had to pinch myself to check I was actually awake and not dreaming when this landed in my inbox this morning.

This is a truly excellent piece of journalism on autism and the growing CAM (Complimentary and Alternative Medicine) industry (Small Pharma?) that surrounds it. And its in the Daily Mail.

I can imagine many people choking on their cornflakes this morning. A little JAB of reality.

In this burgeoning market, private doctors and clinics have sprung up across the UK claiming they can treat or even ‘reverse’ the disorder.

Recent research published in the Journal Of Developmental And Behavioural Paediatrics found that a third of parents of autistic children have tried unproven ‘alternative’ treatments.

Worryingly, the study claims one in ten has used what the experts class as ‘a potentially harmful approach’.

I’d personally say the figures were a little lower than that now. As MMR fear in the UK has tapered off, parents turning to CAM has (I think) dropped off. One only has to take a look at the slackening number of posters on the various anti-vaccine pro-CAM autism websites such as JABS to see this in action.

Parent to four autistic children, Jacqui Jackson explained how many of us try something silly before coming to our senses:

‘I bought enzymes and supplements from America, which cost a fortune. I even paid thousands for a special mattress, blankets and pillows with magnets sewn into them that the sales people promised would do wonders but, of course, didn’t work.

‘Autism is seen by some people as big business.

‘I meet parents who want a cure and spend money in the hope they’ll have a normal child. I try to warn them that there is no evidence any of these things work, but they’ll often go ahead.’

I hold my hands up and admit we tried a bit of quackery – fad diets and even homeopathy (its all on this blog somewhere) – because we didn’t know any better basically.

In his exposé the Mail reporter claimed to have an autistic child so he could ask some CAM autism practitioners over here what to try:

During my investigation, I was recommended expensive tests, vitamin supplements and special diets, ointments, suppositories and injections to ‘flush out toxic heavy metals’, bizarre-sounding high-pressure oxygen chambers and intravenous infusions of hormones – and told in each case that they could bring about a complete recovery from autism.

Yet medical experts say there is no evidence to support their claims, and in fact many of the treatments I was offered were potentially harmful, and even possibly fatal.

The experience left me disturbed at the lack of regulation surrounding these practices.

Its nice to hear someone from the mainstream media stating what some of us have been stating for the last few years!

The report mentioned how:

This week, new legislation aimed at protecting consumers from ‘rogue traders’ came into force, prohibiting businesses from making ‘false claims’ that a product is able to cure illness.

Its about time. Hopefully, some of these CAM artists will be investigated under the auspices of this new law.

The reporter went to see a few DAN! registered UK docs. The experience wasn’t pretty. One made outlandish claims for Secretin but didn’t ask for any medical records. One pushed chelation and never mentioned Tariq Nadama. Another said the reporter would have to commit to a year of rubbing in a skin cream chelator of dubiouis eficacy. Dr Lorene Amet failed to disclose that she wasn’t actually a doctor of medicine (its not uncommon for DAN! ‘doctors’ to not actually be doctors).

Its a highly revealing piece of a grubby, grasping little world that preys on the parents of autistic people. Thanks are due to the Mail for reporting on this so accurately and thoroughly.

The Bernadine Healy Card

31 May

Last month, ex NIH leader, Bernadine Healy came out of her semi-retirement to weigh in on the autism/vaccine hypothesis:

….the rise of this disorder, which shows up before age 3, happens to coincide with the increased number and type of vaccine shots in the first few years of life. So as a trigger, vaccines carry a ring of both historical and biological plausibility.

It was a credulous article designed, I suspect, to have a bit of a snipe at HHS – currently embroiled in the Autism Omnibus. Why do I say that?

Well, being a UK citizen I’d never heard of Bernadine Healy so I did a bit of looking around to see if I could adequately explain to myself why such a luminary would say such plainly silly and unscientific things.

It seems that:

on 10 Feb [1993], Healy, who is known for her bluntness, went to her new boss, Health and Human Services (HHS) Secretary Donna Shalala and asked about her future. Shalala apparently matched Healy for bluntness. “She let me know it wouldn’t work out in the long term.” Said Healy.

So possibly there is some lingering resentment towards HHS. Who knows. It seems doubtful that this would entirely (if at all) explain Healy’s decision to parrot pseudo-science but – people do silly things sometimes.

What I found fascinating was that this is not the first time Healy has taken an active role in direct opposition to science and the scientific process:

…..patients are forced into a one-size-fits-all straitjacket…..EBM [evidence based medicine] carries its own ideological and political agenda separate from its clinical purpose.

Dr. Bernadine Healy, a senior writer for U.S. News & World Report and former director of the National Institutes of Health, falsely claimed that “several” neurologists who “evaluated” Terri Schiavo determined that she had “a functional mind” and was “minimally conscious.”

Dr Bernadine Healey, former director of the National Institute of Health said, “Blenderizing these diverse trials into one giant 232,606-patient-strong study to come up with a seductively simple proclamation is just silly….”

That latter was Healy’s attack on a study that highlighted the dangers of vitamins.

So we can see that Healy has a history that is peppered with leanings toward a credulous approach.

It also seems that she is first and foremost a politician, willing to sacrifice her scientific credibility to support her party (she is a Republican):

Healy was appointed director of the National Institutes of Health in 1991….when Healy assumed control, the agency was beset with problems…..[s]cientists were leaving in record numbers because of…..politicization of scientific agendas (a prime example was the ban on fetal-tissue research because the Republican administration believed it encouraged abortion)

Healy had, at that time expressed support for fetal-tissue research:

….she had been a member of a panel that advised continuation of fetal-tissue research, her appointment was also seen as a move away from politicized science.

So, it must’ve come as something of a shock to NIH scientists when:

….she lobbied against overturning the Bush Administration’s ban on fetal tissue research, despite her previous support for such research.

She also had to defend herself against charges of mishandling a scientific misconduct case:

Healy demanded that OSI (like internal affairs for the NIH) rewrite a draft report that found misconduct on the part of Popovic. The OSI report also severely criticized Gallo.

“When her order for a rewrite was refused, Dr. Healy replaced the chief investigator [Suzanne Hadley] with one more malleable,” the subcommittee report said. The resulting OSI report was “watered down,” the subcommittee document said.

……….

In 1992, the National Academy of Sciences’ panel completed its investigation and produced a report critical of Gallo.

Healy chose to ignore the findings of the NAS panel and commissioned her own ad hoc committee of top NIH scientists, whom she called her “wise men,” the report said. Healy required the members to sign a secrecy agreement.

(Full story also here).

Maybe the biggest question mark against Healy’s scientific credibility and ability to be impartial as this. She was a member of The Advancement of Sound Science Coalition:

The Advancement of Sound Science Center (TASSC), formerly the Advancement of Sound Science Coalition, is an industry-funded lobby group which promotes the idea that environmental science on issues including smoking, pesticides and global warming is “junk science”, which should be replaced by “sound science”.

Notably, TASSC promote the interests of tobacco companies:

Initially, the primary focus of TASSC was an attempt to discredit research on Environmental Tobacco Smoke [passive smoking] as a long-term cause of increased cancer and heart problem rates in the community — especially among office workers and children living with smoking parents. It subsequently advanced industry-friendly positions on a wide range of topics, including global warming, smoking, phthalates, and pesticides. Later still, they extended the role of TASSC to Europe using Dr George Carlo. TASSC used the label of ‘junk science’ to criticise work that was unfavorable to the interests of its backers.

TASSC’s funders included:

3M
Amoco
Chevron
Dow Chemical
Exxon
General Motors
Lawrence Livermore National Laboratory
Lorillard Tobacco
Louisiana Chemical Association
National Pest Control Association
Occidental Petroleum
Philip Morris
Procter & Gamble
Santa Fe Pacific Gold
W.R. Grace

More can be found here.

So, all in all, I am disposed to not trust the words, or ‘beliefs’ of Bernadine Healy very much. Anyone who campaigns against the dangers of passive smoking to children or who is prepared to block science they allegedly once supported when it is politically expedient doesn’t seem that good a judge of what constitutes good science.

Dr John Briffa is wronger than wrong on vaccines and Hannah Poling

30 May

Media nutritionism is a crowded field, but John Briffa has managed to carve out a niche for himself. And Briffa’s take on vaccines stands out, even among media nutritionists. JDC takes a broader look at Briffa’s take on autism, but I’m going to focus on Briffa’s claim that:

the US Government recently looked at such evidence relating to just one girl (Hannah Poling) and concluded that vaccination had contributed significantly to her autism.

As readers of this blog can probably spot, almost every word of that statement is inaccurate: impressive work, indeed. Continue reading

Autism Conference and Autism Science

29 May

First of all, I want to let people know that the second USD Autism Conference involving Autism Hub members Has been announced.

There is a Facebook Event to allow the Autism Hub Facebook Group to disseminate information about the conference.

This is, once again, due to the tireless work of Steve. Thanks are due to him.

Secondly, an interesting piece of new science has been announced:

A Long Island researcher has pinpointed for the first time brain regions in children with autism linked to “ritualistic repetitive behavior,” the insatiable desire to rock back and forth for hours or tirelessly march in place.

…..

In children with autism, Shafritz found deficits in specific regions of the cerebral cortex, the outer layer of gray matter linked to all higher human functions, including repetitive behavior. He also mapped deficits in the basal ganglia, a region deep below the cerebral hemispheres.

So this would seem to be yet another area of autistic behaviour that has been ‘reclaimed’ from the anti-vaccine people who claim that the repetitive behaviours were a symptom of mercury poisoning. This is, of course, all to the good as it means that accuracy has replaced supposition.

‘Neurodiversity’ in New York Magazine

26 May

The journalist and author Andrew Solomon (author of the truly excellent and personally recommended Noonday Demon) has written a long piece for New York Magazine entitled The New Wave of Autism Rights Activists in which he paints us a picture of the heavily fractured tripod of autism activism.

Its far, far too long for me to summarise but I will try and give a very brief overview of how Solomon sees these three groups:

There are in reality three sides in this debate: those who believe autism is caused by environmental toxins (especially vaccines) and should be cured by addressing those pollutants; those who believe it is genetic and should be addressed through the genome; and the neurodiverse, who believe that it is genetic and should be left alone. These camps are blatantly hostile to one another. Gerald Fischbach, the scientific director of the Simons Foundation, one of the largest private funders of autism research, says, “I’ve never seen an advocacy community as intense and demanding. The mercuries get livid when people talk about genetics. The geneticists get furious when people talk about environmental toxins. And these activists get angry at both.”

That is a fairly accurate picture although not without it faults (ND’s believing autism should be ‘left alone’….not sure about that – and Solomon does qualify that statement later on)

I don’t really want to talk that much about Solomon’s piece. Its very, very good overall in my opinion. What I _do_ want to talk about is my reaction to it and how my slightly changed view of what ‘neurodiversity’ means to me is.

Ever since I had a large public disagreement with certain people last year about how I and other parents on the Autism Hub allegedly advocated (this disagreement led me to ‘outing’ myself as a manic depressive, handing over ownership and control of the Autism Hub and taking time away from blogging for a week or two), I have been thinking off and on about ‘neurodiversity’ as a practical construct.

I will come clean and say that Andrew contacted me for a statement about what I thought about neurodiversity as someone both neurologically different and also parent to someone neurologically different. That I didn’t make it into the final piece is testament to his skills as a journalist and my own growing ambivalence regarding neurodiversity. I started off by saying:

I felt that I had a good handle on the meaning of neurodiversity – to me it was simple: the diversity of neurology or, to lengthen that out to a truly epic state of pedantry, the many differing states of being that could be neurologically encompassed.

and I still do think that. I also said:

…what neurodiversity was, was a concept that could be embraced by people who valued difference and respected those who were different. It didn’t matter to me that those who embraced the concept were parents or professionals or autistic people or blind people or bipolar people or any mixture of the above. The important thing was that here was a group of people who were saying that being different wasn’t bad. That it (whatever ‘it’ happened to be for you) was a state of being worthy of respect in its own right. It is vital to me that my child grows up to think of xyrself as a person who is entitled to respect.

Beyond that, I am unsure what – if any – of the other things associated with neurodiversity apply to me. I am not ‘anti-cure’. I agree with Alex Plank who states in the article:

Alex Plank, who founded the Wrong Planet Website, which has over 19,000 members, says, “Since no cure exists, I don’t have to be opposed or for it. The thing now is to deal with the autistic people who are already on this planet.

What I want to do is raise my child to a point where xe can advocate for xyrself. If there was a cure invented tomorrow I would want xyr to able to ask the question xyrself: ‘Do I want this?’. This is because, as a parent, just as it is not my right to make xyr not autistic, it is neither my right to keep xyr autistic against xyr own wishes. I am a parent first and advocate second. Let me go even further. If a cure was discovered tomorrow I would not advocate against it. I would try and debate its use as something that should be used with extreme caution but I would not advocate against it point blank.

I come from a viewpoint that views a cure for autism as something that should not be necessary, not as something that should not exist.

What I mean by that is that I do not think it should be _necessary_ for someone who was autistic to be made not autistic in order to enjoy their life. I see plenty of autistic people clearly enjoying their lives and who they are. I want to see respect, tolerance and caring to come _first_ – not only after someone has been ‘cured’. This is (to me) at the root of the recent issue involving Alex Barton. One argument is that because Alex is autistic this is only to be expected. I disagree with that totally. I think that Alex was/is worthy of respect whatever his neurology. Its the same reason I don’t really like the heavy NT bashing that goes on at some ASD forums – two wrongs never make a right.

I also come from a belief that science is important. I therefore recognise that we cannot pick and choose what science we like and what we don’t. Science is either valid or it isn’t. So, when a scientist writes a _good_ paper that states MMR doesn’t cause autism I have to (by definition of science) agree with it. Likewise however, if a scientist writes a _good_ paper that states that Facilitated Communication is not valid, I have to accept that also. I do think that some neurodiversity activists are guilty of picking and choosing what science they like and saying its good and vilifying science that they don’t agree with. Which is fine if the criticism is valid. But not if it isn’t.

If a scientist works on a cure for autism should he be stopped? No way. To me, that’s pointless. If science is interested in a subject they’ll do it. Not always in the best interests of humanity I grant you but all the same – the debate about what to do with the results of said science are more practical than simply trying to stop it.

So, I’m not sure if I am ‘ND’ anymore. Or maybe I’ve just re-interpreted what I think being ‘ND’ means for myself. I don’t know.

Edit: Missed a bit

The closing of Andrew Solomon’s piece is a bit of a dichotomy.

Severe autism is a ghastly affliction that should be cured

I’m afraid that I entirely disagree with Andrew there. They key word is ‘should’. To me, the sentence would be more representative of my own personal definition of ‘nd’ if it read:

Is it important to cure ‘severe’ autism or look more carefully at how the rest of society operates around ‘severely’ autistic people?

.

However, it seems as though Andrew was reading my mind when he wrote:

It is unproductive to rail against the incurable; if you can learn to love it, that’s your best chance of happiness. For some people, the love is self-evident; for others, it is acquired through struggle; others cannot do more than pretend to it. Though neurodiversity activists can get in the way of science and sometimes wrap themselves up in self-important, specious arguments, they also light the way to such love—a model of social acceptance and self-acceptance that has the capacity to redeem whole lives.

Rodier on Bernard et al. and environmental causes of autism

25 May

The idea that mercury poisoning causes autism was first put forward in a paper by Sally Bernard and others entitled Autism: a novel form of mercury poisoning.

This was published in a journal called Medical Hypotheses. As you might tell from the title, Medical Hypotheses presents hypotheses-not proven ideas. The journal has no peer review process. Instead, they basically print “…will publish radical ideas, so long as they are coherent and clearly expressed”. If you write well and pay to publish, it will likely get in. Keep that in mind with any paper from “Medical Hypotheses”.

In this paper, the put forth the hypothesis that mercury causes autism. To support this idea, they compare the symptoms of autism and mercury intoxication.

In the Autism Omnibus Proceedings, Dr. Patricia Rodier spoke on specifically the Bernard paper. Dr. Rodier has a unique position in the United States, and likely the world: she is an expert on both mercury poisoning and autism. Below is a rough transcription based on the audio recording of that testimony.

She starts out by stating that she has many criticism of the Bernard paper. She also mentioned a response to that paper had already been published by Nelson and Bauman. That paper is worth reading, and it’s free on the Pediatrics website.

Dr. Rodier then discusses the comparisons made between mercury poisoning and autism, based on her experience with both. If you want the short version: there is no comparison.

First, many of the symptoms or characteristics that are discussed in the Bernard paper are not specific to either autism or mercury poisoning. These include, nausea, vomiting, irritability and temper tantrums. Basically, these are things that happen for all of us at times.

Other symptoms are common across many disabilities: mental retardation, depression and abnormal gait. Again, these are not specific to either autism or mercury poisoning.

Almost all the symptoms used for mercury poisoning are taken from “Mad Hatter’s” disease: the result of a very high exposure to inorganic mercury vapor. Only a few symptoms listed were from ethyl mercury exposure. Since the exposure from vaccines is due to ethyl mercury (thimerosal breaks down to ethyl mercury) that would be the valid comparison.

Dr. Rodier, in her testimony, then discussed how the Bernard paper doesn’t actually do what it purports to do. The comparison isn’t valid since the actual symptoms of autism and mercury poisoning do not match up in a comparison.

She then goes on to discuss many of the comparisons made by Bernard, et al., and show that the comparisons are not valid.

1. Under psychiatric disturbances, the paper discusses depression, flat affect, depressive traits, mood swings, impaired face recognition

1a. Depression is a symptom of acrodynia. This is an exposure to inorganic mercury, not ethyl mercury. While some, possibly many, autistics suffer from depression, it is not a characteristic of autism.

1b. Mood swings are a characteristic of Mad Hatters disease. Again, this is not an autism symptom or characteristic.

1c. Flat affect is a diagnostic trait for autism but not mercury poisoning . Also, this is the opposite of mood swings, a characteristic of mercury poisoning noted in ii, above.

1d. Impaired face recognition occurs in autism, but hasn’t even been tested in any kind of mercury poisoning.

So, in this first group of four: there is no overlap for the above 4 ‘symptoms’. If it happens in mercury poisoning, it doesn’t happen in autism and vice versa.

2. Under speech and language deficits, the paper describes:
2a. Verbalizing and word retrieval. This is a problem is observed in Mad Hatters disease but not autism. But, this is compared to ecololia and word use and pragmatic errors. These never happen in mercury poisoning. It is an autism trait.
3. Again under psychiatric disturbances, the paper lists “Lacks eye contact”, and “impaired vision” under mercury toxicity, compared to “problems with joint attention” as the ‘similar’ autism trait
3a. “lacks eye contact” is a symptom of autism, but not of mercury poisoning. Likewise, impaired visual fixation is a symptom of methyl mercury poisoning-the brain control of the eye muscles are impaired which doesn’t allow you to fixate on something-but is not a symptom of autism. Joint attention has nothing to do with vision. It is not a feature of any kind of mercury poisoning. It is a social impairment, not a vision issue.

4) Under CNS structure, they compare “progressive microcephaly” for mercury poisoning with “progressive microcephaly and macrocephaly” for autism.
4a. progressive microcephally is given as a symptom of mercury poisoning. The idea of ‘progressive’ is incorrect here. Also, microcephaly is a sign of methyl mercury toxicity prenatally, not postnatal exposure. Children are born with it.
4b. Progressive macrocephally is a sign of autism. However, it has never been reported in mercury poisoning.

5) Under Neurochemistry, they list “Causes demyelinating neuropathy” under mercury poisoning.

5a. Demyelinating nerorpathy results from a chronic exposure to inorganic mercury. It is not reported in autism.

5b) They list “demyelination in brain” as a characteristic of autism, but no one has ever listed this in autism and the reference doesn’t address it.

Dr. Rodier posed the question: since the authors are trying to show a connection between thimerosal containing vaccines and autism, why don’t they compare autism and ethyl mercury poisoning? Keep in mind, there are various forms of mercury (ethyl and methyl being two types of organic mercury). In their comparison, Bernard et al. have picked from ethyl, methyl and inorganic mercury symptoms. Dr. Rodier suggest the reason they didn’t stick to purely ethyl mercury symptoms because “It doesn’t make a good story”.

1) For example, in a paper by Zhang , 41 people were exposed to ethyl mercury from tainted rice. They knew dose from how much rice they ingested. The authors documented the symptoms. Doses varied from mild to death.

1a) The three most comment symptoms documented by Zhang were:

1a.i) Muscle Weakness

1a.ii) Loss of appetite

1a.iii) Dizziness

Dr. Rodier notes that “those don’t sound much like autism”.

1b) The next 10 symptoms listed by Zhang are

1b.i) nausea

1b.ii) abdominal pain and diarrhea

1b.iii) fever

1b.iv) numbness of the extreminties

1b.v) peresthesia and ataxia

1b.vi) vomiting

1b.vii) thirst

1b.viii) unsteady gait

1b.ix) ringing in the ears

1b.x) headache

Dr. Rodier: again, none of these sound like any of the symptoms of autism that are used in diagnosis.

Dr. Rodier stresses at this point: there is really no correspondence between the symptoms of ethyl mercury poisoning and autism

The government’s attorney asked: the current hypothesis is that low levels of inorganic mercury cause oxidative stress or an inflammatory process which cause autism. Does that make sense? Dr. Rodier answered quite directly, “no”. In the opinion of that autism and mercury poisoning expert, the logic does not work.

She went on to point out that scientists try to disprove hypotheses, not just find support for their given hypothesis. (author’s note here: this is quite true. You need to test a hypothesis and make sure it doesn’t fail, not just collect the evidence that implies it is correct).

She points out that there is one piece of evidence that completely refutes the Bernard et al. hypothesis. There have been autopsy studies performed on people with acute ethyl mercury poisoning. While they indeed had high levels of organic mercury after the ethyl mercury was gone, these people recovered from the mercury toxicity symptoms after the ethyl mercury was gone and the had inorganic mercury was left.

This was the end of the discussion on the Bernard paper and mercury. It is pretty clear when an expert in both fields-mercury toxicity and autism-speaks on the comparison. Compare this to the authors who wrote the paper. Of the three, only one had a background in medicine. That is Lyndelle Redwood, a nurse. None of them are researchers, none experts in either autism or mercury poisoning.

From the above it is pretty clear: the hypothesis put forth by Bernard et al. was a poorly formed and is definitely incorrect.

In the Omnibus Proceeding, the discussion then moved away from mercury directly and into the question of environmental causes of autism. The question was posed: when does autism begin? The answer was that it almost always is determined pre birth.

This led to a discussion of known environmental factors that lead to autism. Dr. Rodier listed them and listed when the exposure has to occur to result in autism.

The known environmental causes are: Rubella, thalidomide, valproic acid, ethanol, misoprostol. All are involved during gestation. The timing of exposure to increase autism risk is:

1) Rubella (German measles): before the 9th week

2) Thalidamide: week 3 and 4

3) Valproic acid: week 3 and 4

4) Ethanol: week 3-5

5) Misoprostol: week 6

She noted that tuberous sclerosis is an example of autistic symptoms developing after birth as the tumors progress.

Terbutaline has been brought up a number of times by the plaintiffs (petitioners) in the Omnibus as an example of an environmental cause of autism. The question was raised as to why Dr. Rodier didn’t discuss this. She described that it is not an environmental cause study, but a genetic study.

Twin pairs were studied. Some were exposed to terbutaline and some were not. They compared the concordance: the rate of one twin having autism if the other did not. No significant increase was found in general in this study. So, the authors looked at a smaller subset, and still found no increase. Then, they looked only at male twins, where no autistic siblings were present in the family. In that case only, they found a significant effect.

Dr. Rodier goes on to discuss that even interpreting this part is difficult because we don’t know if the increased risk was due to the terbutaline, or the fact that the children were at risk of being born early (terbutaline is given to prevent premature delivery).

The judge (Special Master in this court) asked if this was because without the terbutaline the children would not have survived to be born. Dr. Rodier agreed and pointed out that the interpretation the plaintiffs are supplying is further confused because low birth weight is also an increased risk factor. This is from a very recent paper in Pediatrics. Since the turbutaline twins were low birth weight, that could be a factor in the increased autism risk found.

The plaintiffs lawyers have been using a study on rats as an example of a post-natal environmental exposure. The government lawyer asked if this was a valid interpretation. Could this be used to suggest a post-natal exposure could cause autism in humans? Dr. Rodier answered that this is not valid. Newborn rats are more developmentally immature than newborn humans. Newborn rats have closed eyes, no hair, and in other ways are very much more developmentally like prenatal humans. The study would compare better to late-gestation humans.

There was much more in her testimony, but that gets even farther away from the Bernard paper, so we can end this discussion here and let others pick up the rest of her testimony.

Autism Omnibus – Liz Mumper

21 May

Elizabeth Mumper is an expert witness for the Petitioners (for the families). She is the medical director for DAN/ARI and founder of the Rimland Centre.

She firmly believes vaccines cause autism.

On Days four and five last week, Mumper testified. Again, there’s little point me going through the Petitioners exam – you can easily guess the content. Where things got interesting was on cross exam.

Again, this is me making notes on the audio so there may be minor errors. I also didn’t get the name of the young man doing the cross exam for the Dept of Justice.

In the expert reports that Mumper prepared for the thiomersal hearings, she stated:

1 in 6 children born today is predicted to have blood levels of mercury high enough to impair neurological development.

And she referenced Stern, 2005 to support that statement.

The DoJ immediately asked her where in the Stern paper that figure was quoted. After 2mins, 01 seconds of which only the noise of someone rifling through a paper could be heard, Mumper stated:

I do not see the 1 in 6 statistic there.

To which the DoJ lawyer asked:

Q: So the Stern paper does not state ‘1 in 6 children born today is predicted to have blood levels of mercury high enough to impair neurological development.’

A: You are correct.

Ouch.

The next question that came Mumpers way was – in fact I’ll do the whole exchange:

Q: Have you ever treated a child for mercury poisoning?

A: No.

Q: What formal training have you received in toxicology?

A: None.

Now wait just a minute – Liz Mumper, medical director of DAN! is stating that _she has never treated a child for acute mercury poisoning???_ Did I miss something here?

There was a lengthy to and fro after this during which ‘autism: a novel form of mercury poisoning‘ was discussed. Mumper squirmed a bit but admitted that it was published by three non-scientists, in a non-peer reviewed journal and that as she put it ‘the science had progressed’ since its publication (which was her way of saying it was dead wrong I think).

The DoJ moved on to a discussion of some of the papers that Mumper used to support her beliefs. Key amongst them were Mady Hornig’s Rain Mouse study and the Nataf Porphyrin study.

Mumpers take on the Hornig paper was fascinating. According to her, the:

…mice got OCD behaviours and they clawed through each others skull…

Now firstly – OCD behaviours? According to every member of the mercury militia worth their salt, Mady’s mice got _autistic_ behaviours. Now, obviously, they didn’t. Everyone from the IOM down (including certain tiara wearing bloggers) pointed out that the behaviours reported by Hornig bore no resemblance to autism. Now here was Mumper confirming that.

Secondly – this skull clawing – why was that raised in court? This behaviour was certainly not part of Hornig’s paper. It smacks of second hand sensationalism.

The DoJ lawyer asked Mumper what her opinion was of the Berman paper that entirely refuted Hornig (‘the present results do not indicate pervasive developmental neurotoxicity following vaccine-level thimerosal injections in SJL mice, and provide little if any support for the hypothesis that thimerosal exposure contributes to the etiology of neurodevelopmental disorders’).

Amazingly, Mumper’s response was that she hadn’t read it! I must admit that when she said that (and yes, you could clearly hear the embarrassment in her voice when she admitted that) I laughed out loud. Aren’t medical directors supposed to keep up to date with science relevant to their ‘areas of expertise’?

The next section concerned the role of the ‘new kid on the black’ – Porphyrins. I’ll quote the initial exchange as near to verbatim as I can.

Q: You order this Porphyrin test in your own practice?

A: Yes.

Q: And do you find them to be a reliable measure of mercury toxicity in autistic patients?

A: *I’m split on that now* because I think that they’re good at showing differential toxicities but the thing that is worrying us now is that we’ve not looked at a lot of control children and we’re starting to do that and *finding that some normal children have abnormal Porphyrins too* .

Again, to those of us who’ve been following these stories, this is not news. However, what _is_ news is to hear the medical director of DAN/ARI confirm that Porphyrins aren’t as useful as touted. Note that although she knows she’s getting false positives she’s still ordering the tests.

There was some back and forth at that point as to why Mumper thought that the Porphyrin test wasn’t very accurate. She says she thinks it is because the control in the Nataf paper were French and Swiss and that US kids are ‘environmentally and genetically different’.

Could be. But, as Prometheus pointed out when we talked about this via email:

Now, if Swiss and French kids are “…too genetically different…” from US (and presumably UK) children for something as simple (and reportedly reliable) as the “porphyrin profile” to work, then what about the Amish?

Which is an excellent point. Its an established fact that the Amish _are_ genetically different. They’re also certainly environmentally different. I guess that doesn’t matter though.

DoJ wrapped up day four by asking:

Q: Porphyrins do not provide any evidence that mercury is in the brain, is that correct?

A: That’s correct.

On day five, DoJ played a little dirty. Bearing in mind that Mumper had said on day four that she was ‘split’ on the efficacy of the Porphyrin test, DoJ asked her to read out sworn testimony she had given in a separate case in Jan/Aug 2007:

Probably the most helpful test to me now is the Porphyrin test….

Which direct contradiction of yesterdays testimony was embarrassing enough, but she then went on to say (in 2007) that:

….it actually looked at the impact of ethyl mercury….

When on day four she had testified that it did no such thing.

All in all, DoJ made Mumper look very unsure. They tripped her up factually any number of times and led her into making statements (never treated mercury poisoning!) that I’m pretty sure she would not really have wanted to make.

Laura Hewitson’s Stinker

18 May

Sorry about the title, I couldn’t find a word to rhyme with her last name to infer wrong-doing a la Age of Autism’s ‘Grinker’s Stinker. Anyway….

Meet Laura Hewitson. Laura is the lead and joint author of a trio of papers presented at this years IMFAR as posters.

These papers (also shredded by Orac) purport to show how it is possible to mimic the 1999 US vaccine schedule and give monkeys autism as a reult. Never mind the fact that the results reported don’t sound or present anything like autism (<em>”survival reflexes, tests of color discrimination and reversal, and learning sets”</em> huh??), lets look at Laura Hewitson a bit more closely then I managed to in a quick 10 min post last time.

As I mentioned at the time, Laura Hewitson claims affiliation with DAN! Thats enough in my book to place a rather large red flag against her impartiality.

Now I’ve learnt that her entanglement with the vaccine/autism hypotheses goes very much further than that.

It turns out that Hewitson’s partner is Dan Hollenbeck, an Age of Autism contributor. Hollenbeck owns the website FightingAutism.org and in the top right hand corner of the FightingAutism website are the words:

FightingAutism is now part of Thoughtful House Center for Children.

And we all know who is the big cheese at THoughtful House don’t we? That’s right – one Andrew Wakefield. He’s also the co-author to the three studies poster presented at IMFAR.

Hollenbeck’s asociation with Thoughtful House goes beyond just having a website affiliated with them however. He’s also an employee of Thoughtful House.

Director of Information Technology for Thoughtful House, Dan Hollenbeck received his Bachelor of Science degree in Electrical and Computer Engineering from the University of Wisconsin-Madison in 1992

….

When their son was diagnosed with autism in 2001, the Hollenbecks relocated from Oregon to Pittsburgh in order to accept employment as an Information Technology Manager for a large NIH (National Institutes of Health)-funded medical research organization

….

He is also on the Board of Directors, as well as the Research Committee, for SafeMinds…

So, here we are with three poster presentations from a woman who has an autistic son, affiliated with DAN!, is married to the Thoughtful House IT guy (who also happens to be on the Board of Directors of SafeMinds) and these afore-mentioned poster presentations are also co-authored by Andrew Wakefield.

I wonder just how impartial this science can be?

How about when we throw one more fact into the equation?

437. Laura Hewiston (sic) and Dan Hollenbeck on behalf of Joshua Hollenbeck, Dallas, Texas, Court of Federal Claims Number 03-1166V

That’s right. Hewitson and Hollenbeck are suing HHS for vaccine injury visited upon their son Joshua.

Now, lets turn our attention to IMFAR where Hewitson made her three poster presentations. INSAR have regulations governing the papers and abstracts submitted.

INSAR requires authors to disclose their sources of contributed support (commercial, public, or private foundation grants, and off-label use of drugs, if any). INSAR also requires authors to signify whether there may be a real or perceived conflict of interest. Any potential for financial gain that may be derived from reported work may constitute a potential conflict of interest.”

Now, maybe Hewitson did note the fact that:

a) Her husband is an employee of an organisation that makes money from treating what they allege is vaccine caused autism.

b) She has an autistic child.

c) Said child has been registered for compensation for alleged vaccine damage resulting in autism (I assume they’re part of the Omnibus proceedings then?)

But if she did, then it isn’t recorded in the abstracts posted on the Age of Autism website.

Monkeying Around

16 May

Its IMFAR time again and over on Age of Autism (thanks to Kelli Ann Davies for this priceless hat tip) they’re getting all het-up:

SICK MONKEYS: RESEARCH LINKS VACCINE LOAD, AUTISM SIGNS
The first research project to examine effects of the total vaccine load received by children in the 1990s has found autism-like signs and symptoms in infant monkeys vaccinated the same way. The study’s principal investigator, Laura Hewitson from the University of Pittsburgh, reports developmental delays, behavior problems and brain changes in macaque monkeys that mimic “certain neurological abnormalities of autism.”

Autism signs? Not just ‘autism? Research hasn’t linked vaccine load to autism?

I’d love to tell you more about this (and the other two accompanying studies on the same subject) but I can’t. Why? Well, because they’re not actually _studies_ as such. They’re poster presentations.

So, what’s a poster presentation? Well, its exactly what it sounds like – its a researcher, making a poster of their research and standing beside it for an hour, hoping other people find it enough of interest to look at. A few popular ones are sometimes asked to be presented orally. There are usually at least a hundred different poster presentations at a conference. It mostly depends on teh size of the conference hall.

Age of Autism’s Dan Olmsted says:

Poster presentations must go through a form of peer review before they are presented at the conference; the papers have not yet appeared in a scientific journal.

One of those two statements is true. The other is sadly not. Here are ‘the rules’ for poster presentations at IMFAR 2008.

Posterboards will have a display area 194cm wide X 84cm high. We suggest that you produce posters in A0 landscape format (120cm wide X 84cm high). Posters will be fixed to boards using sticky-back Velcro that will be supplied on site. Poster Numbers 1-60 will be located in the Champagne Terrace room, and Numbers 61-120 will be located in the Bordeaux room. In the programme a time is allocated for each poster presenter to be standing by their poster.

The page goes on to provide some helpful tips such as: ‘Less is more’ (probably no worries on that score) and ‘Use an appropriate font’. Hopefully, the team will have taken onboard the services a real typography expert such as Dr Paul King of CoMeD.

So – I can tell you next to nothing about these poster presentations. The good folk at AoA seemed oddly reluctant to link through to the abstracts.

However, I can tell you a little about the authors. The primary author seems to be Laura Hewiston of Pittsburgh University. She is registered on that page as a DAN! Doctor. She (I think its the same person) also appears here (see 953) and here.

Also listed as an author according to AoA is one AJ Wakefield. Enough said about that!

Lastly, is Steve Walker who did a poster presentation at an IMFAR in the past (can’t recall which one) which also appeared to offer support for the MMR hypothesis. Oddly, that poster presentation never made it into any kind of peer reviewed journal.

Best comment on Age of Autism comes courtesy of David Ayoub who begins with:

someone slap me!

I tell you, if that man didn’t exist, someone would have to invent him.

Autism Omnibus – Vas Aposhian

16 May

Vas Aposhian is – like Sander Greenland – an expert witness for petitioners (the families) and a professor of molecular and cellular biology as well as a professor of pharmacology.

On Day 2 and 3 he testified as to what seemed to be the main hypothesis behind the whole thiomersal/autism idea.

The basic idea is that some people are genetically predisposed to something called _mercury efflux disorder_ (plain english, they can’t get rid of mercury as well as most people can, it crosses the blood brain barrier and triggers autism). Mercury Efflux Disorder is itself an unproven hypothesis but Aposhian passionately believes in it.

He came under heavy cross exam (I won’t go through his performance whilst testifying to his own ‘side’ – we all know the basic hypothesis), that compromised a lot of day two and most of the morning of day three (the audio is released slowly so I’m a couple of days behind). The part I’m writing about today starts about an hour and a half into day three (NB: I’ve downloaded all the MP3’s and stitched them into one file).

Aposhian says that the mercury efflux hypothesis is supported by six papers:

…each piece of evidence alone leaves some doubt but taken all together the evidence implicates thimerosal/ethylmercury as the likely precipitating agent in the etiology of some of the autism spectral disorders.

Respondent counsel referred to these six papers as ‘pillars’ supporting the hypothesis. Aposhians’s pillars are:

First, Adams et al. (2007) demonstrated that teeth from autistic children contain more mercury than those from non-autistic children.

Respondent counsel asked Asphosian what he thought he could criticize about these papers he says ‘implicate thiomersal’. Regarding Adams et al, Asphosian said (and I’m paraphrasing slightly after scribbling notes furiously):

1) The number of controls should’ve been increased.
2) There were too few test subjects
3) When asked if raised mercury level was an indicator of toxicity, Asphosian answered “I don’t know”.
4) When asked if he would’ve expected mercury concentrations to vary depending on gender, Asphosian answered “Yes”.
5) When asked if Adams controlled for gender Asphosian answered, “No, he doesn’t control for gender”.
6) When asked if lead concentration of a tooth affected mercury concentration of a tooth, Asphosian answered, “I don’t know”.
7) Asphosian was asked, given the fact that the thiomersal hypothesis depended on the role of _ethyl_ mercury, what type of mercury did Adams et al measure in the teeth? Asphosian’s answer was “…did not do speciation” – in other words, he didn’t separate the types of mercury out. He recorded it all.
8) When asked if mercury levels in teeth tell you anything about amounts of mercury in the brain Asphosian replied that he didn’t know as no one had ever done that study.

These are fairly damning failings in what Asphosian’s assumptions were regarding the quality of that study. Of course, there is more wrong with the Adams paper than just the above, but these points are pretty damning. The failure to control for gender, the paucity of subjects and the fact Adams et al didn’t concentrate on ethyl-mercury raise serious questions over what exactly this study can add to the so-called Mercury Efflux Disorder.

I’ll keep appending to this post as I work through the rest of the audio.