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Nigerian Neurodiversity

17 Jun

Its refreshing to realise sometimes that there is a world ‘out there’ beyond the West and that they are living with autism too. And whats more, they aren’t considering it soulless, or sucking the marrow out of families, or organising pointless marches for people to exercise their right to blame others, or forming organisations that concentrate on blaming vaccines, or claiming that denying autism was anything except mercury poisoning in the past and now claiming its the vaccine schedule is just the evolution of a hypothesis, or making a tidy profit of the ignorance of parents.

No, what they’re doing is ‘serving humanity’:

Mr. Babatunde Willouhby,a masters degree holder, left his lucrative job to serve humanity by taking care of autistic and children with Down syndrome, amongst others. He is an administrator in an autistic school, named Hope House School, here in Abuja. While chatting with him recently in his office, I saw in him a man with passion for dealing and caring for a special group of children with slightly different behavioral pattern from those who the society will tag ‘normal children’.

and

Mr Ayiem……said the value he attach to the welfare of his son does not make him see the money spent as expensive, but an investment which is worth giving any individual with confidence that, though it will take time, his son will be independent some day.

and most of all

….socially people see it as a stigma, but I don’t. I have had occasions where I go out with her to supermarket, church and social gathering and you notice people looking at you in a particular way, but I don’t care because she is my daughter. I give her all my love and I display it publicly. I want her to know that she is one of the must loved children in the world.

………..

autistic children and children with Down syndrome can contribute significantly to the society ,if only they are accepted. When we are at home for instance, we help her with her school work by showing her what to do and what behaviour is proper. Of course, like any other child she may go off the track but we help her to do the right things.

……….

If you play any song on radio or on CD and ask who sang it, whether American or Nigerian, she will tell you the name of the artiste. How she knows the name of the artiste and their songs, I don’t know. So if she wants to take that line, I will encourage her all the way. Wendy to me, is one in a million and for me she is a normal child.” From this discussion with Mr Ojugbuna I saw the picture of a father who believes in his child and that was reflected in the behavior of Wendy.

Nigeria is classed as a developing nation (what used to be called ‘third world’). I’d say that in my opinion it has developed a whole hell of a lot further and faster than some people I can think of over in this supposedly enlightened culture.

Quag-Geier

14 Jun

I propose that any researcher or scientist who unwittingly gets into a quagmire with the Geier’s should be referred to as being ‘quag-geier-ed’. Its a handy way of referring to people who’ve (possibly accidently) stumbled into a great big pile of shit.

I therefore nominate Professor Heather Young as the inaugural QuagGeier. She has published a paper with the Geier’s which alleged to find:

associations between neurodevelopmental disorders (NDs) and exposure to mercury (Hg) from Thimerosal-containing vaccines (TCVs) by examining the automated Vaccine Safety Datalink (VSD)

One would imagine that any serious researcher who valued her career would be reluctant to associate with the Geier’s who have odd ideas about what is valid research but maybe Professor Young simply didn’t know.

Anyway, I forwarded the paper itself onto Epi Wonk, a blogger 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. I am now retired.

So very, very bad was the quality of this paper that Epi Wonk took three (and possibly a couple more in the future) posts to tackle the numerous issues with it. I plan to recap them here but here is Epi’s take on the paper itself.

So in part I, Epi found the following:

dubious “imputing” or imputation lies at the bottom of the author’s little trick…..

Imputastion is simply – using known data to ‘guess’ at unknown data. Epi gives an example:

…let’s say a researcher has a file of data on children and 8% are missing data values on parent’s household income, 4% are missing data values on gestational age at birth, and 1% are missing data values on birth weight. She decides to use an imputation procedure to impute values for parental income, gestational age, and birthweight where they were missing. Perfectly fine, legitimate, and scientifically valid under most circumstances.

However, when we are dealing with something like autism….

She examines the data and sees that in certain cohorts in her study population the distribution of autism isn’t quite what she would like. So she “imputes” autism cases into the data set. Except that she’s not imputing a value on a variable for an existing study participant. She’s adding imaginary autism cases into the analysis. This isn’t imputation — it’s cooking the data.

Epi was very disturbed about this to the point that xe said:

This is just not done. It’s not valid. It’s not ethical. Adding imaginary cases into a data set borders on scientiific fraud.

Later on in the comment thread that developed, commenter Andrea asked:

Does this mean that Young, Geier and Geier added 45 and 80 cases that were not in the original data sets, that they MADE UP those 125 cases just to add imaginary data points to make the stats results look more like what they wanted?!

Thats exactly what happened.

In Part II of xes detailed look at this paper, Epi concluded that when it come to controls and particularly controlling for any confounding variables:

….there’s no attempt to control for, or adjust for, the confounding effect of birth cohort. Just one look at Figure 1 (or a basic knowledge about trends in autism) tells you the regression coefficients (slopes) are being driven by increases in autism risk over time. Given the increase in frequency of autism (and other neurodevelopmental disabilities) during time time period, you could do an ecological regression analysis of almost any factor that varied over time and you would find an an association with autism. I would bet that you could enter number of sushi bars per capita into an ecological regression and you’d find an association with autism rates.

This is not a good or valid paper. It seems, based on the expert analysis of a professor of epidemiology that this paper is fundementally flawed.

Green Our Vaccines – the reality

4 Jun

Green our vaccines at 09:15

Contrary to the press reports and the frenzied claims of Jenny McCarthy of rally participants numbering between 8 to 10,000 it seems according to police who accompanied the rally that there were between 500 – 1,000 participants. I cannot source that quote, for which I am sorry. I hope to be able to source it very soon but where I got it from is not available just yet.

The above photo was taken at 09:15. The below photo was taken at the end of the rally.

Green our vaccines crowd

It certainly doesn’t seem to be a very imposing crowd.

People who watched the start of the rally via webcams (my ISP decided to go down today of all days) say that a very loose straggly crowd walking very slowly took about 20 mins to pass a fixed point.

Someone else attending the rally said (again, in confidence):

There were about 500 people at the rally today, about half of whom were children. The press conference lasted for about an hour and a half. The speakers were, in order: Dr. Jay Gordon, Boyd Haley, Dr. Jerry Kartzinel, RFK Jr., Jim Carrey and Jenny McCarthy. RFK Jr. spoke at length about the science disproving a link between vaccines and autism. He said that all that science is paid for by the pharmaceutical industry and that top vaccine advocates such as Renee Jenkins and Paul Offit are in the pockets of these companies.

Other notables in the crowd included JB Handley, Scott and Laura Bono, the Hazlehursts and Jim Moody.

Update: seems the media are cottoning on to the low turnout. As noted by Catherina in the comments, News Channel 10 say:

Hundreds rally against child vaccinations

Seems like the saw through the pretence this wasn’t an anti-vaccine rally too. Well done them.

Apparently, the stupidest quote of the day comes from Jim Carrey:

If fire engines were running over people on the way to a fire, we wouldn’t say there shouldn’t be fire engines. We would ask the fire engines to slow down. That’s our message to the CDC – that we need to slow down the vaccination schedule.

There you have it, fire engines should slow down on their way to a fire. Jim Carrey’s other invaluable contribution was apparently taunting ‘big pharma’ for not finding a cure for autism whilst at the same time:

finding cures for “that great scourge restless legs syndrome, also known as lazy ass disease.”

Thats the same ‘lazy ass syndrome‘ that is associated with pregnancy, varicose vein or venous reflux, folate deficiency, sleep apnea, uremia, diabetes, thyroid disease, peripheral neuropathy, Parkinson’s disease and certain auto-immune disorders such as Sjögren’s syndrome, celiac disease, and rheumatoid arthritis.

Oh and ADHD of course. The same ADHD that is included on the front page blurb of Groups Jenny McCarthy is on the board of.

Update II: If anyone would like to pass on Carrey’s kind words to the RLS community, you can do that at their website.

Later on Carrey apparently asked the rhetorical question ‘how stupid do you think we are‘. Heh.

Here is Jim Carrey’s quotes in the full context of his speech, courtesy of Autism News Beat – once again, venturing into the heart of woo-land.

Green Our Vaccines Coverage Elsewhere

Me
Kristina
PalMD
Kristina (again)
Ginny Hughes
Mike Stanton
Orac
Liz Ditz
Orac (again)
and again!
and again!!!
Kristina (once more)
Stifled Mind
Sharon
Seeing Beauty
S.L.
S.L. (again)
Mike Stanton (again)
Steve
Clotted Cognition

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;

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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.)

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.

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.

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.

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