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Neurological diversity

28 May

It is a common tactic of some people who believe that autism should be cured at all costs to state that ‘the neurodiverse’ are a small minority of adults with Aspergers Syndrome, intent on preserving themselves at the expense of their ‘low functioning’ cousins.

Take a recent post from Harold Doherty railing against Andrew Solomon’s piece in New York Magazine:

The Alleged Autism Rights Movement isn’t much help for the severely autistic, the truly severely autistic….. like my son Conor who wondered (sic) across a busy main street oblivious to the dangers of traffic; or those like the 10 year old severely autistic boy in North Carolina who was struck by a train and killed Saturday half an hour after police received a report he was missing from his home. [Or] like the 50 year old autistic woman who could not communicate to tell the world she was being abused by staff in the residential care facility in which she lives in Long Island…

The sad fact is that, if Harold Doherty would allow himself to see it, no-one from ‘neurodiversity’ is suggesting that people like his son, the 10 year old boy he describes or the 50 year old woman he describes, should not be helped to the fullest possible extent. The trouble is, that Harold (and people who hold similar views) are so caught up in what they _think_ they never actually _see_ . The other fact is that the basic tenet of neurodiversity as _I_ understand the term is that people like Conor Doherty deserve respect. The whole ‘cure’ thing is a fairly trivial side issue. Respect is what comes first.

There is no cure for autism. Does this mean then, that we should not fight for the rights of autistic people of _all_ ages, abilities and expressions? That because they are not neurotypical they do not have rights? or deserve respect?

_That_ is what (to me and I think to very many people) neurodiversity is about. Take Alex Barton – the five year old voted out of his class. That is a _lack_ of respect. There is absolutely no justification for that teacher to behave in that way toward a five year old child. Neurodiversity says ‘this little autistic boy deserves to be treated as if he were the same as anyone else in terms of his right to belong’. I fear that some people who call themselves autism advocates think the problem is easily remedied by curing Alex Barton’s autism (hypothetically of course). I think that that entirely misses the point. People used to look for cures for homosexuality – that was wrong too. The _person who is autistic_ deserves as much of a chance to be judged for who they are with their own set of unique abilities, shortcomings and character as the person who is not.

Does this mean we should ‘leave the autistic child as he/she is’? Of course not! That is the largest of red herrings. If someone cannot communicate, you help them communicate. If someone cannot use the toilet, you help them to learn.

And then, when they have reached the upper limit of the potential for learning on each of these subjects, you accept that that is who they are. For some, that might mean they can now speak. For some it might mean they can barely use one Makaton sign. The _amount_ they have learnt is not the measure of how much respect they deserve. They deserve respect regardless. So we must all work to make the environment safer for young autistic children. We must all work harder to make autistic adults living arrangements safe. These are basic human rights.

It should also be noted that, far from being an autism related term, neurodiversity touches on a whole range of things. Of course, they’re not all called ‘neurodiversity’ but well….

Are voices a symptom of illness or a variety of human experience?

Research has shown that there are many people who hear voices, some of whom cope with their voices well without psychiatric intervention, it has also been found that there are many people who hear voices who can cope with their voices and regard them as a positive part of their lives. Neither is it the case that voices have always been regarded as a negative experience.

Throughout history and even today there are people who hear voices who find their voices inspirational and comforting. These are facts that on the face of it are hard to square with the extremely negative way that the experience is regarded by psychiatry. The researchers, practitioners and involved voice hearers believe it is mistaken to regard voice hearing as part of a psychopathic disease syndrome. Rather, they consider it to be more akin to a variation in human experience – if you like, a faculty or differentiation – something like homosexuality, that it is definitely not open to cure.

Thats taken from a page on Hearing Voices from the Mental Health Foundation. I would suggest that you go read that entire page. Like neurodiversity, some members of the hearing voices community acknowledge that their condition (or the condition of a loved one) can be disabling and distressing. However, they all realise that their can be a unique benefit and comfort in knowing who they are. They believe that who they are can be best expressed as a variation in human experience.

A little closer to home (for me anyway), there is something called Mad Pride which is a movement again neurodiversity in all but name. Its a loose conglomeration of self advocates who are (or have been) diagnosed with mental illness:

About 5.7 million Americans over 18 have bipolar disorder, which is classified as a mood disorder, according to the National Institute of Mental Health. Another 2.4 million have schizophrenia, which is considered a thought disorder. The small slice of this disparate population who have chosen to share their experiences with the public liken their efforts to those of the gay-rights and similar movements of a generation ago.

Just as gay-rights activists reclaimed the word queer as a badge of honor rather than a slur, these advocates proudly call themselves mad; they say their conditions do not preclude them from productive lives.

The people in all these movements are autistic, manic depressives, schizophrenics, tourettes and many more. None of us deny the bad things that being the way we are can bring. But we do not believe that the fact that we are the way we are means that we are second-class or fodder for nothing more than quack therapies and misplaced pity.

All these peoples – and many more – are the neurologically diverse. The Neurodiverse. Belonging to neither nation, nor politics but simply belonging to the simple idea that everyone is _not_ equal but everyone can advocate best for themselves if supported and respected:

“Broken down it means ‘speaking for yourself’, ‘communicating in other ways’, but it’s personal. For me it means that I can speak for myself. It means I’ve got a voice and even without a voice I can communicate in other ways. It means yes and no- most important- ‘No, I don’t want tea, I want coffee, I don’t want sugar’- all the things we take for granted. It means people must listen to me, I can take a risk, I can have a relationship, that can be hard. I can think for myself, I can go to the shop with support and if I need help, people can help me….

Jackie Downer, Down’s Syndrome Self Advocate.

‘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.

Dr. Brent – Toxicologist at the Autism Omnibus hearing

25 May

Listening to Mr. Williams (lawyer for the parents) cross examine Dr. Brent the toxicologist (from May 19, Day 6) was difficult most because after 45 minutes of discussion of the toxicokinetics of ethyl-, vs. methyl, vs. inorganic-mercury all I could hear was “Blah, blah, don’t you agree that the Charleston monkey adult brain study showedgreaterinflammationoftheinorganic glutamaturgicneuron silvergrainsBurbacherinfant paper? Blah blah and further, isn’t it true thattheVahtergroup onlygave80milligramsperkilogramsperdayofmercuricchloride because the defensereferencemasterlist 436page8 indicatesthatSeychellesIslanders spoke at the IOM?”

Nevertheless, I forced myself to listen to portions of it again and again until I thought I understood what they were talking about exactly. There were several times, maybe 8 or 10 even where it seemed obvious to me that Dr. Brent had totally demolished the point that Mr. Williams was attempting to make and Mr. Williams continued on as if it was of no consequence. I kept getting this picture of King Arthur and the Black Knight from Monty Python and the Holy Grail after King Arthur has sliced off the Black Knight’s arm:

ARTHUR:
Now stand aside, worthy adversary.
BLACK KNIGHT:
‘Tis but a scratch.
ARTHUR:
A scratch? Your arm’s off!
BLACK KNIGHT:
No, it isn’t.
ARTHUR:
Well, what’s that, then?
BLACK KNIGHT:
I’ve had worse.

.

The following is more of my rough transcribing of the audio. I have no idea what that word is that sounds like “AT-trib-ated.” If you know I’d be happy to correct my spelling of it. I believe this first paper he’s referring to is one of the Charleston or Vahter adult monkey studies where they gave very large doses of methyl mercury to the monkeys every day, orally. Click here to hear this segment of the cross examination of Dr. Brent.

.

Mr. Williams: It’s says: “the microglia population is a responsive cell type. Once damage has been repaired following activation after injury microglia are known to return to a quiescent state. However, the number of attribated (sp?) microglia remained elevated … in the monkeys of the clearance group which were kept unexposed for 6 months following 12 months of methyl mercury exposure . This group had very low concentrations of methyl mercury, but retained elevated concentrations inorganic mercury at levels comparable to the 12 month exposure group and this suggests that inorganic mercury may be the proximate species of mercury responsible for microglial activation…” a situation similar to that proposed for the cortex study we already looked at. Now, do you agree that normally microglia have a protective role, they come in and clean up whatever’s there and then they return to their quiescent state?

Dr. Brent: To the extent that I understand microglia… which is limited, I would say, yes.

Williams: And if they stay activated then they can become toxic to neurons and astrocytes.

Dr. Brent: Once again, my, my understanding of microglia is more limited than other people who will be testifying later… my understanding is that microglial activations is not necessarily a bad thing and that … the effects here are not necessarily indicative of any neuropathology.

Once again, you know, we are talking about inorganic mercury effects at the concentrations they give here, and if the inorganic mercury is causing adverse effects at the concentrations, then it’s the seafood and the chicken that people are eating and not the vaccines because that’s where the far greater exposure comes from. And that doesn’t make any sense, because everyone is eating seafood and chicken, including children who are getting mercury via breast milk, and we don’t think of breast milk as a neurotoxin!

Williams: If we go down the column on the same page to about 4 sentences above… yeah about where you have it highlighted…
It says: “Further loss of astrocytes would be expected to have deleterious effects on the neuron population, for example through a excitotoxic mechanism. You were here when Dr Kinsbourne testified that that was his … understanding of the mechanism that could likely be at work here that you would have astrocytes no longer able to take up glutamate, so yyou’d have excess of glutamate and have neurons get over excited. Right?

Dr. Brent: Once again your getting a little out of the mercury area, so my answer here is going to be quite limited, what I took away from Dr. Kinsbourne’s testimony was that he was hypothesizing it was excitotoxic mechanism, related to astrocyte effects. But here for example it says, “further loss of astrocytes,” in this study there wasn’t even that much loss of astroycytes! And certainly, uhm, well we talked about the exposure scenario, so I won’t bring that up again …

Williams: And although, you want to talk about the methyl mercury dose here, you recall that the authors of the infant monkey study made a point of saying that the levels of inorganic mercury in these adult monkeys was only 5 times higher on average than the levels they found in those infant monkey brains, right?

Dr. Brent: That’s right, and that’s very good evidence therefore, that the inorganic mercury is not acting as a neurotoxin, or else we are being poisoned every day, and we are having autism being formed every day, from breastmilk, from seafood, from chicken.

Williams: (Clears throat.)

.

I don’t know if it’s immediately obvious to those who haven’t followed the discussion closely, but basically, Mr. Williams had pointed out that inorganic mercury is the “proximate” cause of damage to brain cells. Which is to say that, it doesn’t matter if the original source of the mercury was methyl-, ethyl- or inorganic mercury, because the mercury doesn’t hang around in the brain as either methyl- or ethyl-mercury. Those forms get changed into inorganic mercury, and it’s the inorganic mercury that hangs around. Inorganic mercury (referred to sometimes in the hearing as “Hg-plus-plus,” Hg++) is the same stuff whether or not it started out as methyl-, ethyl-, thimerosol, breast milk, or chicken. And the exposure to breast milk and chicken for the infant and toddler set is much higher than their exposure to thimerosal from vaccines, now or ever. Dr. Brent had said earlier in the cross examination that over the course of 6 months and infant gets “about 250 micrograms of methyl mercury.”

macaque monkey

Besides that the PSC keeps bringing up these studies where macaques were given significantly higher doses, even massively higher doses, of mercury, either thimerosal or methyl-mercury, than babies ever got. The monkeys in the Vahter study were given 50 mcg per kilogram per day of methyl mercury, which Dr. Brent explained is the equivalent in a 70 kg person getting 3,500 mcg a day of methyl mercury. The average diet for that 70 kg person would expose him or her to 11,000 mcg a year. A year! So essentially, the monkeys got a level of mercury in 3 days what they’d get in a year if they had been eating a typical American diet. But some of the monkeys were fed like this for a year. That’s the “12 month exposure group” referred in what I transcribed (above).

And even though they had had that large continual dose of mercury for a year and many of their brain cells were pretty much impregnated with mercury, the monkeys were normal behaviorally. Even if you wouldn’t expect them to become autistic because they were exposed as adults, surely they’d show some outward sign of brain damage if that much mercury were extremely dangerous to brain function.

It was also interesting to me that Burbacher had used 3 or 4 times the amount of thimerosal to dose his infant monkeys as humans got. Had Burbacher used the equivalent amount of thimerosal in the human vaccine schedule the outcome would likely have been that the levels of mercury in the monkey’s brains would have been so low that it wouldn’t have been detectable. (Clears throat.)

There was also some fun discussion about how there’s no increased autism in the Faroe and Seychelle’s islands in spite of the fact that infants have high levels of mercury in their brains (from maternal diet). Mr. Williams stated that “fish is very good for brains” as if that was a point for his side.

Dr. Brent was the first of the respondents expert witnesses to testify in this portion of the Omnibus hearing. He also had testified in the Cedillo hearing. Some of the points about Kinsbourne’s hypothesis regarding astroglial activation, glutamate excess, and cell death were dismantled by Dr. Johnson, and by other experts who testified in the past weak. Dr. Deth’s hypothesis about autism being the result of oxidative stress was pretty much smithereened by two or three of the petitioners experts. I’m still catching up with listening to all of their testimony, but of extensive portions I’ve listened to so far, well, I think it’s looking really bad for dead parrot hypothesis.

Pupil Idol

24 May

I’m a big fan of the original reality TV show Big Brother. Shameful to admit but true.

But I utterly hate Pop Idol (American Idol) and all those utterly vacuous shows where Simon Cowell is paid to crush people whilst the chavs of the UK and the rednecks of the US yuck it up.

And look what its spawned: Pupil Idol:

Melissa Barton said she is considering legal action after her son’s kindergarten teacher led his classmates to vote him out of class.

After each classmate was allowed to say what they didn’t like about Barton’s 5-year-old son, Alex, his Morningside Elementary teacher Wendy Portillo said they were going to take a vote, Barton said.

By a 14 to 2 margin, the students voted Alex — who is in the process of being diagnosed with autism — out of the class.

I’m going to rant and swear quite a lot now so if you’re not into that I apologise.

What the *fuck* is going on when a _teacher_ – an educator (allegedly) is allowed to humiliate, segregate and bully a five year old boy? Is this America? Or os this America?

Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tossed, to me:
I lift my lamp beside the golden door.

Which is it?

I really like America and Americans. I like the fact their speech truly is free. I like the fact that they are proud of their (admittedly short) heritage. I like the fact above all that Jews, Hindu’s, Christians, Asians (near and far east), Hispanics and good old WASP’s (as well as a multitude of others) all mix together and produce America. That rocks.

This doesn’t. This is the underside. This is a country that has allowed five year old children to _vote off_ a fellow five year old (who happens to be autistic) like he was a contestant in a frigging game show.

I would just like to say in the strongest possible terms that it is my considered opinion that the teacher, the school system and the community that allowed this to happen are scum with no redeeming features.

Dr. Johnson testifies in the Autism Omnibus Hearing

24 May

Dr. Johnson’s testimony was fabulous and I think it’s safe to say that it wreaks more devastation on the petitioners'(the parents) case. As of this moment, I can’t give you a lot of detail about Dr. Johnson’s qualifications, unfortunately. For some reason a portion of the audio recording (MP3) that would have included Dr. Johnson’s statement of his qualifications is missing.

One thing I think is important to point out here is that the respondents experts’ (written) reports, and even the list of the respondents’ experts has not been posted to the Autism Omnibus docket. The parents’ lawyers (the Petitioners Steering Committee, or PSC) do have their experts list posted to the docket. Some time ago (I think it was more than a year ago) the Department of Justice attorneys asked the Special Master if the Federal Court would refrain from posting the lists of the respondent’s experts for fear that their experts would be subjected to harassment. That request doesn’t seem to be on the docket now, but it used to be. It’s likely that after the experts were listed the first time the experts for the government were harassed. This would be in keeping with the way different experts, and even parents such as myself and Kevin Leitch and others, have been harassed by “mercury parents” or their friends. You can see from the Autism Omnibus Proceedings Docket Here: http://www.uscfc.uscourts.gov/node/2718 that the there are no more postings of lists of respondents’ experts after mid 2006. There’s an entry from March of 2007 that is called, “Respondent’s Notice of Expert Witnesses,” but there’s no document now linked to that entry.

The point I’m trying to make about the missing expert list is: I can’t pull up the list of expert witnesses for the respondents (the US government, essentially) for this hearing because it’s not available. So I can’t find out easily who Dr. Johnson is, though he is a professor at university, and has a lab, and has published on neurophyisology and neurodegenerative diseases, and he uses tissue slides and tissue cultures. Worse, “Johnson” is a very common name so if you go looking for experts named Johnson who publish in neurodegenerative diseases, you’ll find 3 or 4 of them in pubmed. The DoJ lawyer here is one of Mr. Matanoski’s team of attorneys. As far as I can tell the junior attorneys on the team are Bo (Beau?) Johnson, Ms. Ricciardella, Ms. Renzi and Ms. Espinoza (Espinosa?).

I don’t know which lawyer is examining Dr. Johnson. From her voice, I’m guessing (again) that it’s Ms. Renzi. Again this is my transcribing of what was said, some of it is word for word, some of it is a close paraphrase of what was said you can find the following somewhere around 8 minutes 43 seconds on the second MP3 file from Day 7 (May 20). Here is some of the very interesting testimony from Dr. Johnson:

Ms. Renzi: Dr. Deth cited a paper by Mady Hornig in support of his arguments. You mentioned that the mouse strain Dr. Hornig used was selected because it had a stronger immune response, but took issue with Dr. Deth’s explanation of the rationale behind the use of the strain. … Deth said hers was a mouse strain harboring genetic deficits in redox related enzymes… What strain of mouse was used?

Dr. Johnson: It was an SJL-J mouse. (Dr. Deth) was inferring that there was a redox enzyme differential, or some kind of differential (in this strain) and that’s absolutely not true. The mice have a this increased immune response and that’s why they were selected. … There’s absolutely no data supporting the fact that there is a redox enzyme differential. Now I can understand the reason that it’s in there because it supports his hypothesis… but it’s not an accurate representation of these mice.

Renzi: Do you have confidence in Dr. Hornig’s reported results?

Johnson: Uh, no.

Renzi: Part of that has to do with the hippocampal sections, correct?

Johnson: The quality of the images,… I’ll point this out, (the sections from the Hornig paper) .. What you can see is when you look at these images–to me these images are absolutely awful, now the staining here is hematoxylin and eosin, and it’s supposed to stain for architecture and cell integrity and a variety of other things. The pictures are diffuse, there’s no clear neuronal fields. Right here there is weak staining. … If you look here, the cells that are dark right there, those are the neuronal fields. The quality is just extremely low. … Quality of the sections themselves are low. … Let’s put it this way, I’ve seen this in my lab before. I’ve seen people come to me with sections stained like this. I’ll say: Something’s wrong. OK? The tissue wasn’t prepared right. There’s something definately wrong here. Because these do not maintain the nice cellular architecture that you should see if the experiment is done right and the tissue is harvested correctly.

Renzi: Problems with these slides led you to doubt the findings of the Hornig paper? Has a recent paper contradicted Hornig’s findings? …

Johnson: The… comparable fields in the Berman paper. To me they are absolutely beautiful. … It looks very, very, very good.

Renzi: … What dose of thimerosal was used in the Berman paper?

Johnson: …They also used a does that was 10 times higher…

Renzi: Did both studies (stain with antibodies)?

Johnson: There is a distinct difference between Berman and Hornig studies’ slides… If you look at the architecture of the tissue in the Berman study…. (there is) nice staining in the hippocampus….

Special Master:… (interrupt for clarification)

Johnson: … Berman sections are the two sections on the left side… What you can see is there’s very nice staining in the field, the neuronal field are not staining intensely (which is what they are expected to show)

Now if you look at the upper 4 panels on the right side these are from the similar panels from the Hornig study. The first thing that I want to point out is that if you look at the tissue, it’s full of holes… Look at this enhanced image right here, the bottom two panels C and D from the Hornig. You can see that the tissue almost looks like it’s disintegrating, It’s breaking down. There’s holes all over in the tissue.

I know from experience when you see tissue like this the amount of nonspecific staining by antibodies could be intense.

Basically, if someone came to me with this kind of staining in my laboratory I would say to go back and do the whole experiment again,… I would not want… for one these are unpublishable to me, and two the potential for artifactual data to be generated from this kind of (poor quality tissue) is extremely high. … This is very important. You know, you can do whatever you want after you’ve got the tissue, but it’s the process of getting the tissue so that the quality is extremely good. You need to start with high quality tissue.

… The Berman tissue was absolutely perfect. … The sections are beautiful.

One thing I took away from Dr. Johnson’s testimony is that there’s no way that the Hornig paper should

have made it past a competent peer review and into a “peer reviewed” publication. The Hornig paper has a few other problems that have been discussed before, but these problems never been reported in into a letter to the journal that published that paper, Molecular Psychology, as they should have. (Click here to download a copy of that paper from the SAFE MINDS website.)

Hornig wrote that paper with her main squeeze, Ian Lipkin, and with David Chian. This research was funded by the UC Davis MIND Institute, SAFE MINDS and by part of an NIH grant of Ian Lipkin’s. Surely someone knew how bad those tissue slides were even before it was submitted to the journal. Surely someone at the journal should have had a person with some kind of expertise review the article. Surely in 2004 some person with expertise would have noticed the problems with the degraded and uninterpretable tissue slides in the Hornig paper. I didn’t notice any problems with the slides when I read the paper because I don’t know what stained tissue of mouse hippocampus is supposed to look like and neither would most of the mercury parents who have tried to use this paper to show that their own child was made autistic by vaccines containing thimerosal.

The MIND Institute scientists must have seen the problems with Mady Hornig’s study, but they invited her to come speak about her thimerosal-causes-susceptible-mice-to-become-mindlessly-violent-killers hypothesis at the conference I call the “MIND’s mini-DAN!”. Video of her speaking at that conference is still available on the MIND’s website here: http://www.ucdmc.ucdavis.edu/mindinstitute/events/toxicology_recorded_events.html

And you can see video of John Green speaking there, too. He was described in the most glowing terms by Dr. Robert Hendren. Maybe Dr. Hendren didn’t know about the “earthworm eggs” and “fecal implantation enemas” that Dr. Green had prescribed to some of his patients. After Green spoke, Dr. Hendren knew about the problems with Green’s citing of a provoked urine toxic heavy metals lab result from Doctor’s Data Inc that was in Dr. Green’s slides, because I told Dr. Hendren about the problem with that lab report. As far as I could tell, Dr. Hendren wasn’t particularly worried about that. The video of Dr. Green “explaining” what that lab test meant to him is still on the MIND’s website. I have a problem with that, since parents can watch those videos and make poor treatment decisions for their children based on them. On the other hand, those videos seem to stand as a testimony to something less than scientific that seems to be going on at the MIND Institute. To UC Davis’ credit however, the Berman (2008) study that totally contradicts the Hornig (2004) study was also conducted at UCD.

Dr. Johnson has plenty of interesting things to say about Dr. Richard Deth and his neuroblastoma cell line experiments. Apparently, Dr. Deth will be back to testify again in the autism omnibus. Perhaps he will explain why he seemed to cut his experiments short (time-wise) and why he called neuroblastoma cells “neronal cells” when they should not be called neuronal cells, and why he didn’t show critically important “dose response curves”.credit: taminsea

I may have to devote a separate post to the issue of Deth taking data from (but not citing) a 1958 paper (pdf) that reported the level of cystathionine in duck brains (besides duck, also, human, cat, rat, guinea pig, horseshoe crab, chicken, cow and monkey).

Dore UK and Australia are now both in administration

23 May

As noted on this blog and elsewhere, Dore has been marketed as a treatment for ASDs (not to mention dyslexia, dyspraxia and ADHD) based on extremely limited evidence. Dore UK and Australia have now both gone into administration. In Australia, it is unclear whether clients and staff will get what is owed; in the UK, Dore has stated that they “are presently exploring alternative arrangements to ensure every client is cared for” without (as far as I can see) making clear whether staff will get paid. Continue reading →

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Dr. Rust testifies in the Autism Omnibus Hearing

22 May

Today Dr. Robert Rust testified in the thimerosal-only causation portion of the Autism Omnibus Proceedings. Dr. Rust also testified in the Hazlehurst case regarding the combined MMR-thimerosal causation hypothesis. You can find Dr. Rust’s testimony in the Hazlehurst case in the Day 3 transcript from that case. Today is “Day 8” of the thimerosal portion so you can look for the “Day 8” mp3 files on the US Federal Court website.

Dr. Rust has some impressive credentials. He is the Thomas E. Worrall, Jr. Professor in Epileptology and Neurology, and Professor of Pediatrics at the University of Virginia. He had a residency in Pediatrics at Yale University and in Child Neurology and neurochemistry at Washington University in St. Louis. He also had a fellowship in Neurochemistry, Neonatal Neurology, and Brain Metabolism, at Washington University. A University of Virginia website says that he has clinical interests in epilepsy, headache, neonatal neurology and degenerative disorders.

Dr. Rust had a lot of material to cover in his testimony. It seemed to me that he was trying to cover a semester or two’s worth of neurodevelopment and neurophysiology in a couple of hours, trying to keep it simple enough for the needs of the court, and yet detailed enough to make some critical points about how neurons, microglia and astroglia work and discussing what is known about regression in autism and what might cause it. He also discussed some of the particulars of the medical records of William Mead and Jordan King. Their main DAN! doctor is Dr. John Green III of Oregon. Dr. Green is a favorite DAN! doctor as was made clear in the testimony by Jordan King’s mother. She said something like seeing Dr. Green was “invitation only.” No doubt. Many of the lab tests discussed were ordered by Dr. Green, and many of the therapies the boys had were ordered or administered by Dr. Green, including one very traumatic IVIG infusion Mr. Mead described his son enduring.

Bogus lab tests are a huge problem in autism “biomedical” therapies. Not that all of the lab tests used by all DAN! (Defeat Autism Now!) doctors are bogus, but it sure seems like many of those that parents share with the public are highly questionable lab tests such as hair analysis for heavy metals, and urine heavy metals lab tests from one particular lab that was mentioned several times in the testimony. For instance, an image of one of these very lab tests was used as an illustration at the top of a blog entry on a certain autism hysteria promoting group blog recently.

When Dr. Mumper testified she commented about how one of the boy’s lab results had this extremely high level of tin while the other metals were in a normal range. (Keeping in mind that the “normal ranges” on these tests are nearly arbitrary and don’t have much to do with real world levels of anything in healthy or sick autistic children.) Dr Mumper acted as if this was not that weird and she said a couple of times, at least, that when they see such a high level of tin in a child she will ask the parents if the kids are eating a lot of toothpaste or drinking a lot of juice from “juice boxes”. She didn’t offer a specific therapy for “tin intoxication”, whereas if mercury had been that high they no doubt would have all been sobbing over the horror of it all. At any rate, Dr. Rust made an interesting point that high levels of tin are almost unheard of and to get a high enough level of tin to affect health, it basically takes a decade or two of working with tin every day where the tin is exposed to heat and is creating tin vapor and a worker is inhaling it. This didn’t reflect well on the quality of that lab’s tests, or on Dr. Mumper’s ability to think critically about such things as lab test results, in my opinion.

The following is a very rough transcript of one portion of Dr. Rust’s testimony that I found very interesting. I don’t know if the Dept. of Justice lawyer was Ms. Renzi, but I think it was, so I’m using her name for the time being. [Edit: The DoJ lawyer was Ms. Esposito, not Ms. Renzi. This portion of the audio transcript is found in the 2nd file on day 9 the following part is found around a 30 minutes into that recording). The words I added in parentheses are not direct quotes but gives the meaning of what was said. I can’t type that fast and so as I was taking notes I didn’t transcribe portions of it word for word, but got the gist.

Ms. Renz Esposito: I’d like to discuss some of the treatments given to these children.

Esposito:: (Can you tell us if) IVIG therapy (is helpful in autism?)

Rust: t’s been tried along with it’s cousin corticosteroids, but no improvement has been seen bahaviorally, functionally or with EEG.

Esposito:: (Can you tell us about the) supplements (given to William Mead and Jordan King?)

Rust: We don’t hear about most of them probably, to the extent that there is data (these supplements don’t help), to the extent that parents tell us what they are using.

Esposito:: Secretin?

Rust: Secretin was found not to be effective

Esposito:: Chelation?

Rust: I’ve seen no evidence that chelation is helpful in this setting…. (recalls when kids with lead poisoning were chelated in a clinic/hospital where he work) considerable pain it caused. Children would be screaming on the way into chelation.

Esposito: Saunas?

Rust: Saunas can help with headaches and stress and tensions but in autism there is nothing to sweat out except some of the notions about treatments that have been offered to the child.

Esposito:: Dr. Green’s therapies…. (for William Mead or Jordan King) included an implantation enema, ideally with a colonic delivery system, using maternal fetal [fecal?] supernate…

Rust: So far as I know that the approach has been around since Roman times, …. used to be a regular feature of childbirth.

Esposito:: Feeding a child fermented vegetables?

Rust: …(doesn’t change autism)…

Esposito: Earthworm eggs?

Rust: No known benefit that I’m aware of. (The discussion changed to something about herbal treatments.) I had a patient with seizures, the parents gave a Chinese herbal (medicine). The Chinese botanical was interesting. We were astonished (the child had a striking improvement in seizures) , we sent a sample of it to a lab and found out it was phenobarbital.

Esposito: Charcoal?

Rust: (No reason to think it would help)

Esposito: Oral baygam (oral immune globulin)?

Rust: I have no information about that.

Esposito: Valtrex?

Rust: I don’t know any reason to think it would work. (a little later he added that Valtrex is a drug used to treat herpes infections.)

Esposito:: Are you familiar with Eskimo oil?

Rust: (slightly amused) No I haven’t heard of that.

Esposito: Actos?

Rust: (I don’t know of any benefit for autism.)

Esposito: If there were a report of improvement would you extrapolate that there was a cause of autism.

…

Esposito: Is it standard practice to prescribe something to patients and then sell it to them?

Russ: (A doctor’s obligation to the patient) is to listen without repeating their problems… (not to sell the patient treatments) … to keep an office of Amway products. It trades on the prestige we have and the reliance that the patients have on us. It is one of the most grave violations of our code of ethics.

Esposito: Do you prescribe these things?

Russ: No …

Esposito: Do other neurologists prescribe these things?

Russ: No …

The “implantation enema” as I understood it, that was recommended by Dr. Green for one of the boys
was a “fecal enema“.

Specifically, again as I understood it, what was recommended was to take some of the boy’s mother’s feces and mix it with water and infuse that into the boy’s colon or something. From Dr. Rust’s response I got the feeling that he didn’t understand that this particular enema wasn’t just a water enema, but that the idea was to put the germs from the mom’s feces into the boy’s intestines.

Now I thought Dr. Rashid Buttar’s urine injections were bizarre. This one ranks right up there, though, for sheer gross-out factor. And how about those “earthworm eggs”? It’s possible that what Ms. Renzi asked about was “whipworm eggs.” Perhaps I heard what she said wrong, but it sounded like “earthworm eggs” [edit: She said “earthworm eggs”]. Taking pig whipworm eggs orally is an alternative therapy for Crohn’s disease, apparently. I remember reading somewhere that a mom asked Dr. Andrew Wakefield what he thought of giving autistic kids worms to treat their gut problems. He was quoted by that mom as saying that he didn’t think it would work for autistic children’s guts.

I encourage everyone to listen to the recordings of the autism omnibus and to read the transcripts, they are very educational. One can learn a lot about the ‘therapies’ being offered to parents of autistic children as well as some of the best of the best of the science that is known about autism. I don’t agree with everything the experts are saying, such as when Dr. Rust called autism a “disease”, but it’s still very interesting listening if you are at all interested in autism.

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.

New blog worth following

20 May

I don’t usually make recommendations about new blogs. Not because I’m above all that – course I’m not – but mostly because so many people have their set ideas about what makes a good blog and they don’t need me pushing my opinions on them.

But this is a little different. Its the first blog I’ve seen that concentrates on epidemiology and is written by someone who:

…has a Ph.D. in epidemiology from an Ivy League university. Before that I got a bachelor’s degree from a different Ivy League college, a master’s degree in developmental psychology, and a master’s degree in medical sociology from another Ivy League University. I worked for more than 30 years as an epidemiology professor in medical academia and schools of public health, and in the senior biomedical research service at the Centers for Disease for Disease Control and Prevention (CDC). During my career I have been the editor of two epidemiology journals and one more general biomedical journal.

Thats some pretty impressive credentials.

I wouldn’t (and I doubt Epi would either) claim that the blog is about autism or vaccines, or autism related science but the two posts I’ve read that have discussed autism have been clear, concise and easy for non-experts to parse.

So, I hope that Epi will continue to blog tangentially about autism from time to time as there are big issues surrounding autism epidemiology that we could all learn about. But more than that I plan on reading Epi’s blog on a regular basis in order to learn.

That’s not to say I expect to become an epidemiology expert simply by reading a blog! Of course not. But that doesn’t preclude me from being able to hopefully discern from an expert what is important in epidemiological studies and what is not.

I would _love_ to see Epi turn her attention to some of the Geier’s epidemiological studies for example. I think we all might learn a lot from a detailed critique of that particular body of work!

I’d also like to see Epi’s opinion on some of the epidemiological studies being utilised in the Autism Omnibus hearings. As we’ve all seen, the epidemiological basis on the autism/vaccine hypothesis seems to have undergone a substantive revision of late. I’d like to see a professionals take on it.

Best of all though? The name Epi Wonk. It reminds me of Wonko The Sane from ‘So Long and Thanks For All The Fish”. Anyone that sounds that much like a man who believes he’s living in a perpetual lunatic asylum can’t be all bad 😉

So – visit Epi Wonk, see what you think.

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