Archive by Author

In honor of the “Green our Vaccines” rally: facts from the Omnibus Autism hearing

4 Jun

The lawyers for the parents in the Omnibus Autism hearing (thimerosal portion) have been claiming that one cause of “clearly regressive” autism is thimerosal at vaccine doses, even the dose of thimerosal in one vaccine. One of their supports for this odd claim is that whatever DAN! docs do to help their patients deal with “mercury toxicity” makes the kids less autistic or healthier or something. It’s all pretty vague. Dr. Mumper spoke confidently of what chelation had done for autistic kids and the boys under discussion in this portion of the trial were chelated multiple times in spite of never having shown any elevated mercury levels in their urine tests (even their chelated urine mercury levels were what would be expected for a typical person being chelated).

So what about this claim? If you do any old treatment and you think it makes the patient better in some perhaps very vague, undefined way, is this evidence of anything? Eric Fombonne, expert in autism epidemiology and clinician who works with autistic children and adults says, “Mais non.” Well, actually he said the following

Ms. Ricciardella (?): Are there standards that are used by the medical and scientific community before a treatment is recommended?

Dr. Fombonne: Yes, there are different kinds of standards to evaluate the efficacy of interventions the rule is to rely on the evidence that is the most robust that stems from a randomized clinical trial which are usually double blind placebo controlled for this method there is no study which has been relying on this method for the practices and treatment that have been discussed this morning [by Dr. Mumper]

Ms. Ricciardella: Do you have experience with randomized clinical trials?

Dr. Fombonne: Yes actually, I do. I started my research career and did my thesis my first two publications, I think, have to with randomized clinical trials.
And I am currently, we have tested the efficacy in a randomized clinical trial of a treatment which is not which is not biomedical which is a language based intervention to improve communication skills in young children with autism.
And we did a randomized clinical trial. It’s a 12 weeks treatment and we allocated at random parents and their children to a group where they were immediately treated with this intervention and there was a waiting list for the control group and 36 families in each group so it’s quite powerful in terms of it’s statistical power.
I just wanted to share with you my, my, our findings that it’s an intervention that everybody likes, eh and when we did the trial we had all the impression that it was actually achieving some positive results. The parents were happy and were convinced that the methods were showing some efficacy, and we did too.
But as we did the study well we didn’t analyze the data before the data were finally collected and when we broke the blind and looked at the results and there is no difference between the two groups–which is breaking my heart, in some ways–but this also shows that our experience as clinicians and as parents can be misleading.
And I think the field of autism has been replete over the last 30, 40 years of treatments and interventions that practitioners engage in when the parents apply to their children. And the story has been that when you take these practices and put them to rigorous empirical test, that of a randomized clinical trial, usually the story is much more disappointing. And a case in point is the secretin trial.

I don’t know if it was Ms. Ricciardella asking the questions, but that’s my guess. After this portion he explained about how many parents and clinicians from all over the world had been so excited about secretin when it became popular, and how for about 5 years clinicians used it and had some great stories to support it’s use. But when the double blind, placebo controlled studies were completed it turned out to be no more effective than placebo. And if someone tells you that there were “responders” you can tell them that there were “responders” to the sterile-saline injections, too, so why not just go with those, since they are cheaper than secretin? Besides which there’s no reason to expect that secretin (much like sterile saline) ever would do anything for the symptoms of autism. Further, the Mead boy got one or two injections of it but the family didn’t continue with them, apparently they weren’t so great for that child. Perhaps they decided to go with worm eggs, maternal fecal implantation enemas or even Eskimo oil (possibly purchased from Dr. Green’s office) instead.

http://static.boomp3.com/player.swf?song=bjsb2fd<a style=”font-size: 9px; color: #ccc; letter-spacing: -1px; text-decoration: none” target=”_blank” href=”http://boomp3.com/listen/bjsb2fd/fombonne-randomized-control-trial”>boomp3.com</a&gt;

Tags:

Green Our Vaccines Eve – Dr Jeffrey Brent

3 Jun

On the eve of the ‘green our vaccines‘ rally, I thought it might be interesting to share a ten minute or so segment from the Autism Omnibus.

Giving evidence is Dr Jeffrey Brent:

Jeffrey Brent, M.D., Ph.D. is a sub-specialty board certified medical toxicologist. He is an active member of the medical school teaching faculty and is an attending physician on the clinical pharmacology/toxicology consultation service at the University Hospital. Currently he holds the rank of Clinical Professor of Medicine at the University of Colorado Denver. Dr. Brent has a long list of publications, virtually all related to clinical toxicology. He is senior editor of Critical Care Toxicology: The Diagnosis and Management of the Critically Poisoned Patient and serves as Editor-in-Chief of Toxicological Reviews, a major international state-of-the-art review journal devoted to human toxicology.

Dr. Brent is the former President of the American Academy of clinical Toxicology, the largest organization in the world devoted to this discipline. Currently he serves as a member of the Board of Directors of the American College of Medical Toxicology.

We pick up testimony around five and half hours into day 15. I’ve transcribed directly from the audio, so please forgive minor errors. Emphasis is Brent’s, inserts are marked [].

Q: Dr Mumper discussed today some key aspects of chelation therapy….as a medical toxicologist do you see any reason for the chelation to remove mercury from either Jordan King or William Mead in these cases?

Absolutely not….there is no test in medicine that is more valid for for assessing mercury toxicity than an unprovoked urine mercury concentration.

[For Jordan King and William Mead]…their unprovoked urine concentration is exactly in the normal range.

On the other hand, they have been chelated. And the justification for that chelation with regard to mercury comes from what you see in the right hand column where in both cases, 4 out of 5 provoked examples have been…uh…increase urine mercury. Well, you’re supposed to have increased urine mercury with provoked examples! Therefore there is absolutely no indication based here or anywhere else I saw in the medical records that suggest that there is any mercury effect in these children and therefore that was absolutely no reason to chelate them for any mercury related reason.

Q: Dr Mumper also testified today to seeing an increase in lead levels in children and that chelation may help with the adverse effects from lead. Is there any scientific or medical basis for that statement?

It is true that chelation therapy is the appropriate therapy for lead toxicity. However, the records do not reflect any lead toxicity in the case of either of the two children at issue here, Mead or King. Neither of them have had an elevated blood lead level and a blood lead level is the ‘gold standard’ test for lead toxicity. Because, contrary to testimony that was given earlier today [Dr Mumpers – KL], blood lead remains elevated and it will be elevated for years in children that have lead toxicity. It equilibrates with tissues and if there’s high tissue burden there will be high blood burden.

Q: So you disagree with Dr Mumper that the blood levels would only test for acute toxicity?

Thats absolutely wrong. So there was no indication therefore for treating these two children with a chelator for any lead effects.

Q: Is there any other accepted tests for lead toxicity, other than blood?

Blood is the ‘gold standard’ and there are no other accepted tests in medicine now that we can routinely get blood/lead levels.

Q: Was there anything about the levels you observed in the medical records [of either King or Mead – KL] post chelation that would cause you to think that these were extraordinarily high levels of excretion upon chelation?

No. You always expect to see levels in the urine bump post-chelation. It would happen to any one of us. There are no validated reference ranges post chelation, thats why they’re not used in medical practice – there is no valid way of using them and in fact if you look at these two children they had mild increases in urine/lead excretion as I recall but they were nothing different than what you would normally expect to see if you gave a chelator to them.

Q: And you’ve given chelators to a lot of children?

I’ve chelated a number of children.

A: There’s nothing here that would be out of the ordinary – from your experience – absent, even in the absence of a standard reference range.

Well, in truth we don’t (?) urine/leads because the ‘gold test’ is blood/lead so I haven’t looked at many urine/leads in children that I have chelated. So I can’t speak to that in my experience. But I have seen a number of patients now come to me because of these ‘doctor’s data‘ type of laboratories which are based on urines – chelated urines – and they always have high leads in their chelated urines and I tell them ‘well, lets just do the gold standard test, lets get a blood/lead level and so far, 100% of the time they’ve been normal.

Q: Are the post chelation mercury levels in either of these two boys in excess of what you would see…or in excess – I take it there’s no standard reference range…?

No standard reference range. You do tend to see small increases, they’ve had minor increases in their mercury excretion over the reference ranges over the non-provoked. It was certainly not very dramatic and certainly well within the range of what you would expect to see. For example if you look at the studies that I cited where they were studying chelators and they were looking at the effect of the chelator on urine/mercury excretion.

Now thats a valid time to do a post chelation mercury – if you want to study the effect of the chelator. And if you look at the normal controls in those studies, when they give them a chelator you do see some increase in the urine/mercury excretion and its a moderate increase and its really not very different than what we saw in these children [King and Mead – KL]

Q: Have you chelated children for lead or mercury toxicity?

Actually, both.

Q: And under what circumstance did you chelate for mercury toxicity?

I’ve had a number, but probably the most common and the most dramatic relates to the fact that I live in Colorado and in the Rocky Mountain area there people who are still panning for Gold…..[they extract the gold from ore using liquid mercury]…and to get rid of the mercury [afterwards] they will heat it. In their house. In their kitchen. When you volatilise mercury like that [it gets into the air]….and I’ve had a number of families have become profoundly mercury poisoned.

Q: So when Dr. Mumper said that she saw ‘mobilisation’ of heavy metals by chelation and then assumed that the chelation was beneficial – do you agree with that statement?

No, I think what you see is – you give a chelator, you look in the urine and there’s more than in the non-chelated reference range is for the metals in the urine and its what you would normally expect. It tells you nothing about mobilising stores of heavy metals.

Q: Dr Mumper also talked about supplements. And those supplement were referred to increase Glutathione to treat mercury toxicity. Do you agree that that therapy is warranted in cases?

Glutathione? No. Supplemental glutathione to treat mercury toxicity has no validity at all.

A quiet concession

3 Jun

While much has been made of a certain “concession” lately, it is worthwhile noting that the past month has seen a significant shift in the mindset of people pushing the autism “epidemic”.  In vaccine court it was the petitioners (plaintiffs) who opened with the admission that if there is any group of people with autism as a result of vaccine injury, the number would be so small as to be invisible to epidemiological studies.  (This didn’t stop them from closing with the latest Geier paper claiming that they can see the effect of thimerosal on the autism rates.)

But, this hasn’t been such a sudden shift.  As far back as last November, David Kirby noted:

“Finally, to all those who are going to post comments about the autism rates in California not coming down, following the removal of thimerosal from most vaccines: You are right. The most likely explanation is that thimerosal was not responsible for the autism epidemic.”

Baby steps….baby steps…

That’s my way of saying to those who would bravely rise up in their seats and proclaim, “stop the hate speech!” that the above is progress.  Sure, we still have to continue to endure the “epidemic” language for now.  Why he can’t just admit it in full, I am not sure.  Oddly, Mr Kirby doesn’t put forth a valid suggestion of what caused this “epidemic” of non-thimerosal-induced autism.  He does try a last-ditch effort to prop up the possibility of a thimerosal-induced-autism-epidemic with claims of immigration and pushing the goalposts back to 2011.  

But, I felt I had to acknowledge the fact that even Mr. Kirby is stating that the most likely answer is that it is not thimerosal before I go on.  Because, if one looks at the data just a little farther, one can find a likely answer for why there is a larger number of young people identified with autism than older people.  It isn’t news to us, and it isn’t news to Mr. Kirby and the rest: one likely reason is substitution.  I don’t know which they would try to avoid more, admitting that substitution is a big effect or an MMR jab, but let’s look a the data.  Just a peak. 

Consider  Autism as a function of age in the CDDS (California Department of Developmental Services) data.  Keep in mind, this is service data–i.e. this is a count of who is receiving services from the CDDS, not a count of who has autism in California.  This is not epidemiological grade data.   But, since it has been used so much, let’s move forward, keeping the caveats in mind. (click on the graph if you want to see it larger and more clear)

 

So, Autism count vs. age (data in black), what do we see?  Of course, we see a big peak in the younger ages.  This is the “Tidle Wave” or “Tsunami” or “Insert Other Hate Speech Term Here” that people like to use to make this scary.  But, as you have noticed, I have included the data for “Mild Mental Retardation” as well, in red.   What do we see there?  A dramatic dip in individuals identified with mild mental retardation in the younger ages.  Does anyone believe that something happened in California to reduce the number of people with intellectual disabilities?  If so, they aren’t very vocal about it.

If I were reading this for the first time, I would be suspicious of someone using only one mental retardation category.  Believe me, all mental retardation categories show much lower numbers in the younger age brackets.

This is a clear indication of “administrative substitution”.  [edit–see comments below] Joseph has done a lot of work on the CDDS data in the past and notes (below) that it is very difficult to draw conclusions about substitution from the publicly available data.  However, this is similar to what people have reported in the literature especially using special education data: people with autism have very likely been mislabeled, their autism label was “substituted” for a different label.  They weren’t “missed” as the favorite straw-man arguement would have it, but mis-labeled.

One person in the AutismOne media discussion (as reported by AutismNewsBeat) kept saying, “you ain’t seen nothin’ yet”, implying that the future is going to be very different from the past.  I have to agree, in the future, more adults with autism will be correctly identified.  They won’t be in hospitals with schizophrenia diagnoses, for example.  This will be a good thing.

Frankly, I’d like to see that change come sooner.  I’d like to see adults properly identified and appropriately served now.  We have to move away from baby steps and take bigger steps away from the “epidemic” and acknowledge that unidentified/misidentifed adults with autism are almost certainly out there.

Instead, we have people asking to “Green Our Vaccines“.  The “Green Our Vaccines” idea is a very cute way to mask the typical “epidemic” speech.  But it is the same old story: autism is vaccine injury and new.  Note that almost all of the groups sponsoring the “Green our Vaccines” rally are autism-related.   Sorry to divert to that topic somewhat, but I can’t help thinking that all that effort is being put into that rally by people who actively supress the existance of adults with autism.  I can’t help thinking that the present and the future would be better if they were acting to help everyone with autism, now.

(noted, this has been edited to more correctly reflect Joseph’s opinions on substitution.  Also, I missed another Green Our Vaccines link.)

How many autistic amish?

3 Jun

Yesterday, Joseph wrote a great post that looked at the prevalence of low functioning autism amongst the Amish and found it correlated strongly with non Amish sources.

Today, I want to look at the Amish through the lens of the ‘new’ prevalence that The Autism Omnibus Petitioners expert witness (for the families) Professor Sander Greenland testified to.

Now, as we all know, when Dan Olmsted first started writing about the Amish he claimed that both Amish children are never vaccinated and that the Amish either don’t have autism, or it is very rare.

It has been established since than that Omsted’s ‘reporting’ (which constituted asking a water cooler salesman) somehow missed the fact that the Amish actually do vaccinate in pretty high numbers.

Since that time, as the autism/vaccine hypothesis has become weaker and weaker we have seen a ‘silent switch’ amongst its proponents. Gone is the talk about ‘epidemic’ and hundred of thousands of children ‘poisoned’ to be replaced with talk such as:

My message is this: “We need more research to determine if a small subset of kids is genetically susceptible to lifelong neurological injury from something, or things, in our current vaccine program.

This has been echoed by Dan Olmsted. When Autism News Beat stepped into woo-land and visited Autism One, Dan Olmsted was quoted on camera as saying (this is a hurried transcription, apologies for slight errors):

…you try to listen for anything that’s useful in terms of information. Sometimes they tell you things that they don’t mean to in terms of how..uh..you know we learned things about the Amish from a blogger who tried to destroy my reporting about that because he basically talked to somebody who confirmed that there were very few cases of classic, regressive autism. So…it’s, you know…that’s the way it is…

So, we can see that the ‘silent shift’ is underway. Nobody acknowledges it but the media people amongst the autism/vaccine believers have switched their stance. Now we’re only looking for a small subset of regressive cases.

This was born out by the families expert witness Professor Greenland. He was asked to tackle the epidemiology for autism and stated that the number of kids made autistic by vaccines (assuming it had happened at all) was so small it could not be detected by epidemiology. He contended that it was in fact a subset of a subset he called ‘clearly regressive autism’.

Using his data, we could see that ‘clearly regressive autism’ accounts for 0.015% of a given population. According to Elizabethtown College the Amish population of the US is about 220,000.

So, in real terms we are looking for (0.015% of 220,000) 33 ‘clearly regressive autistic’ people.

According to Mark Blaxill, Olmsted has already found:

….less than 20 cases

Which is good news. It means he must already be over halfway in finding all the ‘clearly regressive autistic’ people he needs to in order to establish the Amish have the same rate of ‘clearly regressive autism’ as the rest of us.

The Amish Anomaly is an anomaly in one respect only – it is anomalous to keep silently shifting the numbers you want to find. Now that David Kirby, Dan Olmsted and the Autism Omnibus families are all on record as only looking for a ‘small subset’ isn’t it time that the Amish Anomaly was seen for what it is – anomalous.

Is the Prevalence of Low Functioning Autism Among the Amish Actually Lower Than Expected?

2 Jun

Note: For purposes of this post, the term ‘low functioning autism’ will refer to autism that co-occurs with mental retardation, or an IQ evaluated at less than 70. The validity of this accepted nomenclature is not the topic of this post.

–

Summary

The prevalence of low functioning autism among 2-9 year-old Amish children in Lancaster County, Pennsylvania, has a lower bound of 14.2 in 10,000. This is in line with the prevalence of reported autism with mental retardation in the California DDS system (at most 13.1 in 10,000) for the same age cohort. Additionally, it is not too far away from the prevalence of low functioning autism as ascertained by more methodologically rigorous epidemiological studies.

While no assertion can be made about the prevalence of high functioning autism among the Amish, the existence of an “Amish anomaly” is unsupported and appears increasingly unlikely.

Background

Dan Olmsted had written a well-known series of articles where he claimed (1) that Amish children are never vaccinated [source] or that only a small percentage are [source], and (2) that the Amish either don’t have autism or that autism is exceedingly rare among the Amish.

These claims were subsequently scrutinized by Prometheus, Autism News Beat and Lisa Jo Rudy. They investigated the matter and found that both claims are most likely mistaken. Autistic children do exist among the Amish, and the Amish do indeed vaccinate. The Amish of Illinois appear to vaccinate at a rate of 90%. Lisa Jo Rudy’s source provided a figure of 70% for the Amish in Lancaster County.

Apologetic responses by Dan Olmsted and Mark Blaxill (PartI and Part II) followed. The gist of the responses is that Dan Olmsted was not actually negligent in his reporting. Olmsted claims he did attempt to contact The Clinic For Special Children without much success. Additionally, Olmsted and Blaxill claim that while the Amish do vaccinate, they do so at a lower rate than that of surrounding communities, and therefore, they argue, the finding of an “Amish anomaly” is still relevant to the hypothesis that vaccination is an autism risk factor. (The responses also appear to indicate that those who scrutinize Olmsted’s reporting are “wackos” and say “some stupid things” — I’m guessing this was done to discourage further criticism).

Notwithstanding these responses, it is clear that the credibility of Olmsted’s reporting suffered a substantial blow. Take, for example, one of his most popular findings: That the few autistic children he came across happened to be ones who were vaccinated. This finding is rendered completely inconsequential by the mere fact that most Amish children are vaccinated at least once.

What I really want to address in this post, nevertheless, is the persistent claim that autism is exceedingly rare among the Amish, with a focus on low functioning autism.

Why low functioning?

Dan Olmsted was not likely looking for high functioning children, and even if he was, it is improbable he had the means to properly ascertain the prevalence of high functioning autism. The expertise required for such an endeavor is non-trivial. A methodology that consists of “asking around” is not likely to produce an accurate result.

Furthermore, Dr. Strauss of The Clinic For Special Children had told Autism News Beat that they do not screen for ASDs, nor do they see high functioning autistic children at their clinic.

Strauss says he doesn’t see “idiopathic autism” at the clinic – children with average or above average IQs who display autistic behavior. “My personal experience is we don’t see a lot of Amish children with idiopathic autism. It doesn’t mean they don’t exist, only that we aren’t seeing them at the clinic.”

Strauss says a child in the general population is more likely to have autism detected early and to receive a diagnosis than an Amish child. “An Amish child may not be referred to an MD or psychologist because the child is managed in the community, where they have special teachers,” he says. “We know autism when we see it, but we don’t go actively into the Amish community and screen for ASD.”

[source]

With all due respect to Dr. Strauss, I think a clarification is in order before we proceed. I believe he mixed up terminology in his statement to ANB. Idiopathic autism simply means that no cause has been determined for a particular child’s autism. There may or may not be mental retardation in idiopathic autism. The same is true of non-idiopathic autism.

It seems plausible that The Clinic For Special Children generally only sees autistic children who are low functioning. The important thing is that this is the case of the children in a study we will discuss shortly.

Another important clarification is that when I talk about low functioning autism I am not referring to Autistic Disorder vs. “full syndrome autism” vs. PDD-NOS vs. Asperger’s Syndrome. This appears to be a common point of confusion. There may or may not be mental retardation in Autistic Disorder. It is not a requirement in the diagnosis.

Minimum Prevalence Calculation

I am not going to count autistic children Dan Olmsted claims to have found. This is because it is unclear how many exactly he found where, given his reporting methodology, nor is it clear what the characteristics of the children are. Furthermore, I personally don’t consider his reporting reliable.

Thankfully, there is a peer-reviewed study we can use: Strauss et al. (2006). This is a study of Old Order Amish children from Lancaster County. In Table 1 of the paper we see they look at 9 patients, ages 2 to 9, 100% of whom have mental retardation, and 67% of whom have pervasive developmental delay or autism. In other words, this study identifies 6 low functioning autistic children. Let’s consider this the minimum number of autistic children, ages 2 to 9, among the Amish of Lancaster County. At this point we just don’t know if The Clinic For Special Children has come across other low functioning autistic children.

Also of note is that the children “had no distinguishing physical features, and growth trajectories were normal, although all patients had relatively large heads and diminished or absent deep-tendon reflexes.” This tells me that there was nothing noticeably odd about these autistic children that would lead someone to believe they are different to non-Amish autistic children. The fact that a genetic etiology was determined in these cases by top geneticists is of no consequence to a prevalence calculation in my view.

The Amish population of Lancaster County is about 25,200 (Raber’s 2004 Almanac via this web page). Their life expectancy is similar to that of the US general population. However, they have high population growth, with their population doubling every 20 years. This is similar to population doubling in India, which I will use as a reference to calculate the number of 2 to 9 year olds among the Pennsylvania Amish. According to the CIA World Factbook, 31.5% of the Indian population is 0 to 14 years of age. Extrapolating from this, I will estimate that 16.8% of the Lancaster County Amish are 2 to 9. In other words, there are 4,234 such children.

Since we know there are at least 6 low functioning autistic children in this community, the absolute minimum prevalence of low functioning autism for the cohort is 14.17 in 10,000.

California Comparison

No methodologically sound exhaustive autism screening has been carried out in the Amish population. We only know about cases that have been reported. This is why I thought a comparison with California reporting would be fair. It may not be precise, since the ascertainment methodologies are not the same, but I don’t believe it can be called an unfair comparison. Further, I do not believe the well known limitations of California DDS data make the comparison unfair either.

As of December 2007, there are a total of 17,029 children 2 to 9 in California classified as autistic and who have sought DDS services [source]. Most of them do not have mental retardation. We don’t know exactly how many have mental retardation, but we can determine a ceiling on that. For this, I counted how many autistics total have mental retardation, plus – to be fair – how many have “unknown” mental retardation status. This came to 32.67% of all autistics in the system. Since this proportion is known to have dropped considerably as more young children have been diagnosed in recent times, it follows that 32.67% is an upper bound percentage when it comes to children. In other words, there should be at most 5,564 known low functioning autistic 2-9 year olds in the California system.

Since the 2-9 population of California is 4,248,774 (2006), the prevalence of reported low functioning autism for the cohort is at most 13.1 in 10,000.
Comparison to Epidemiology

I often discuss how the prevalence of already recognized autism, and the prevalence of screened autism (or true prevalence) are two very different things. In particular, when autism is thoroughly screened in populations with intellectual disabilities, a lot of autism which wasn’t previously thought to be there is suddenly found (e.g. Shah et al. 1982; La Malfa et al. 2004; Matson et al. 2007).

Epidemiological studies are not necessarily perfect in this regard, but their methodology goes considerably beyond any work currently available as far as the Amish population is concerned. Let’s take Yeargin-Allsopp et al. (2003), for example.

Cases were identified through screening and abstracting records at multiple medical and educational sources, with case status determined by expert review.

The prevalence of low functioning autism from this Atlanta study was 23.12 in 10,000.

There are two UK studies by Chakrabarti & Fombonne (2001; 2005) ascertaining the 4-6 prevalence of PDD. The derived prevalences of PDD with mental retardation from these studies are 16.15 and 17.5 in 10,000, respectively.

Finally, we have a Chinese study, Zhang & Ji (2001), with a finding of 11 in 10,000 autistic children, all of whom were “intellectually disabled.”

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 →

Tags: , , , , , , , ,

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.

Dean Jones PhD- oxidative stress and the Omnibus Autism hearing

28 May

Dr. Dean Jones testified on the topic of oxidative stress in the morning of Day 9 of the Thimerosal-only portion of the Omnibus Autism Proceedings hearing. Dr. Jones is a professor at Emory University. He received a Nobel fellowship to do research in molecular toxicology in Stockholm. He is currently a peer reviewer for the journals Toxicology, Nutrition, Science, and Nature Methods. He also has been the chair of a “study section” at the NIH, as such it was his job to oversee peer review process of grant applications.

He is the recipient of grants to do research. One of his major grants for looking at oxidative stress in cell nuclei. He is one of the asst. program directors for a $22 million award from the NIH for translational research. Dr. Jones oversees two labs at Emory, one is his own research lab focusing on redox chemistry. He lectures on nutritional biochemistry, pharmacology and metabolism and has written many articles on sulfur metabolism, and he estimates that he has written over 100 original research articles on oxidative stress.

Dr. Jones testified that sulfur is the 5th most common element in biological systems and sulfur is ubiquitous in living systems. All this sulfur beneficially affects how our bodies deal with heavy metals.
The following is more of my rough transcription of what Dr. Jones said as he was examined by Ms. Renzi. Words in parentheses are my summary of what was said, the rest is more of an attempt to get what was said word-for-word. Keep in mind, there is a lot more than this. I haven’t tried to transcribe all the testimony by Dr. Jones wherein he explains a lot about what Glutathione is and details the reasons for his conclusions about Dr. Deth’s hypothesis and the idea that thimerosal in the doses contained in the vaccines given to even the tiniest babies ever could do anything vaguely like harm:

Ms. Renzi: …. Glutathione does more than just detoxify heavy metals, is that correct?

Dr. Jones: Glutathione has a very important role in metabolism. It is the major thiol. (It’s a major) sulfur containing chemical…. maybe 1/3 of the total sulfur (in the body is found in glutathione) the most abundant thiol.

Ms. Renzi: What is the role of glutathione in the body?

Dr. Jones: … The one that has probably received the most attention in the past 50 years is the function of glutathione as an anti-carcinogen. Glutathione is used to counter reactive chemicals that would otherwise cause mutations in the DNA and cause cancer. A little over 50 years ago it was recognized that many chemicals we are exposed to are activated in the body to reactive chemicals, the most central way that the body gets rid of these is by reacting these with glutathione. Glutathione is the most anticarcinogenic chemical we have in our body.

It is also an antioxidant….Hydrogen peroxide is produced in the body all the time, about a pound a day of oxygen consume, about 1% of that is converted to hydrogen peroxide– a large portion of that is eliminated by glutathione.

…there is a coenzymatic function of glutathione. One of the main ways we get rid of formaldehyde is through a catalytic action, involves using glutathione as a catalyst. The glutathione is not used up (in doing that).

Ms. Renzi: Deth’s hypothesis is thimerosal containing vaccines disrupt sulfur metabolism and causes autism. …

And Based upon your knowledge and research in the area of sulfur metabolism and glutathione do you have an opinion as to whether thimerosal at the doses administered in thimerosal containing vaccines can significantly affect sulfur metabolism.

[This is about the 22 minute mark.]

Jones: What the data show is that the dose of thimerosal (under discussion) will not affect in a significant way, sulfur metabolism.

Renzi: Why is that?

Dr. Jones: (He gives the amount of sulfur in a human body. He gives estimated total body glutathione.) 1 millimolar (is) 1000 micromolar. (He gives the amount of sulfur in sulfur containing foods a typical baby would eat: 500 micromoles per kg of body weight.) … We have a huge total thiol content in the body.

Ms. Renzi: (In your scenario that compares sulfur exposure to mercury exposure from vaccines,) how did you calculate the thimerosal dose?

I took the cumulative dose (that) was 180 mcg. I rounded it up (apparently to 200 mcg). (I calculated it as if) that were given all at once to a 1kg child, so that would be a two pound child. This is a very conservative way to look at this, the exposure would probably be six-fold lower than this. If you calculated it this way that would be equivalent to one micromole per kg of body weight. The more realistic would be 0.1 micromole per kg. The cumulative dose of thimerosal is considerably less than that daily intake of sulfur amino acids would be… 2000 fold lower than the total body thiol.

Renzi: Do food items also contain reactive materials that our body use glutathione to deactivate.

Johnson: … if we look at the amount of reactive materials in a 8 oz glass of 2% cows milk that number is 21,700 nanomoles. If you assume that a child would consume 4 oz in a serving would be the equivalent of 10 micromoles. One 4 oz serving would contain more than 10 times as much of the reactive materials (as is in the estimated 200 mcg of mercury from thimerosal.)

Renzi: The amount of reactive materials (in those common foods are) above that cumulative dose in a thimerosal normally administered over a 6 month period.
…
(1 hour 36 minutes)

Dr. Jones: (summing up) … at 4 critical sites in this scheme the pieces don’t fit together that that’s a plausible hypothesis and plausible mechanism that changes in sulfur amino acid is a cause of autism

Ms. Renzi: So, the data that Dr. Deth presented actually in formulating his hypothesis doesn’t support his hypothesis is that correct? …

Yes. … Slide 28 is Dr. Deth’s slide 41… What I think that the data show, uh, you know, to me fairly clearly in, you know, that that there really is not appropriate evidence, this is just not, the data, saying that the dose of thimerosal is enough to alter the sulfur metabolism, this is not, not established by the data. And similarly if you had a perturbation in the sulfur even if a very minor effect happened it really wouldn’t be of a magnitude that one could consider that that is the cause of oxidative stress. I think you have to conclude that this is not established, either, the second point. And finally then if you look at the subsequent aspects of that the variations, the oxidative stress, there’s a normal variation in oxidative stress and that the magnitude of effects are really not appropriate, and in fact the mechanisms that he’s drawn can not account for changes in the methionine synthase activity and the in vitro data he’s provided without in vivo data supporting it, really you have to conclude that this step in the pathway is also not established. That is the oxidative stress to the methionine synthase.

…And so from that summary, from my standpoint there really is no plausibility to this hypothesis at all. It’s what I would consider a, a scaffold without a building. there’s a lot of components to it but it really doesn’t have the strength, solidity of being solid science, of being reasonable or plausible. …

So, this is my final slide, slide 29 … I think in terms of the overall, you know, my overall consideration of this:

I think the point one is the cumulative dose of thimerosal is too low to cause the magnitude of effects on glutathione metabolism that would be required to conclude that there’s any likelihood of effect there. It’s not plausible.

Point two, the natural variations are greater than one would expect from the low dose of thimerosal that are present in thimerosal containing vaccines.

The third point, … if you did have an effect, you’d have to conclude that the low non-toxic dose would probably be protective, because that would be activating protective mechanisms that ubiquitously occur.

Fourth, the in vitro studies show that thimerosal disruption of metabolism is probably occurring under non-specific conditions–ones that were you simply have the cellular conditions set up so that you are going to be disrupting lots of things–that you are not going to be giving any specificity. That’s simply because they are at irrelevant concentrations, irrelevant amounts.

I have to conclude that the data really don’t support this hypothesis that there is an effect on the glutathione system that’s causing oxidative stress and that that’s the cause of autism.

Ms. Renzi: Thank you.

Special Master Vowell (addressing PSC lawyer, Mike Williams): Are you prepared to begin cross examination or would this be a good time for a break?

Mr. Williams: I would very much enjoy a break, if that would be alright with you.

One can only imagine how much Mr. Williams needed that break.

I’m running out of adjectives to describe how thoroughly the dead parrot hypothesis has been demolished by the Department of Justice’s experts up to this point. I would not like to be Dr. Deth or even Dr. Wally. There work in cell cultures was described as basically not worthy of publication and it puzzles experts on how it got past peer review. Even the Petitioner’s Steering Committee’s own experts are doing serious damage to their own hypotheses from my observation, via sloppy testimony, bad evidence, citing what amount to speculative essays by absolute non-scientists “published” in non-peer reviewed magazines, experts with unusual ties to unusual funding sources, shaky sources for “data” in testimony that most would consider plagiarized because the real source was not cited, self plagiarism from previous reports, inflated–bordering on fabricated–credentials, extreme lack of expertise in the area where they are testifying, lack of preparation, and a lack of agreement and coherence between the petitioners own experts’ stories. Oh, and they keep bringing up new stuff, new ideas, new papers at the very last minute, which is just not done.

And … I have to ask, if the PSC lawyers were confident in what they were presenting, would they really need to be insulting to the experts for the DoJ? Seriously. Dr. Jones started to get impatient with the way Mr. Williams was badgering him on the cross examination and acting as if he, Jones, should already know what was in a paper that Mr. Williams just handed to him a minute previously, one of those last minute introductions of “evidence” that is totally out of bounds, normally. What I keep hearing on and off from the PSC lawyers, is a tone of voice that implies, “You’re just an idiot, aren’t you? You don’t know this???” Maybe that’s how lawyers are supposed to talk, but I didn’t hear it coming from the DoJ lawyers on cross examination of the PSC experts. The Special Masters have been very generous. I hope the Special Masters can see what a flimsy structure the arguments are that the PSC has constructed.It's just sleeping!

I hope parents who buy into the whole vaccine/heavy metal causation hypothesis and its accompanying “biomed” insanity are listening to these hearings because they will see how they’ve been led around by the nose by “experts” using big words and “healers” making big promises. I also hope that people don’t ever avoid vaccinating their children just out of fear of autism or vague fears of “toxicity.” The stuff to fear is not the vaccines. The stuff to fear is the sometimes deadly germs that vaccines can help protect their children from.

Tags: ,

← Older Entries
Newer Entries →