Archive | June, 2008

Competition Time

11 Jun

Icon Books sent me a review copy of the UK release of Unstrange Minds which is how I was able to review it so promptly.

However, this means I now have (count ’em) _three_ copies of Unstrange Minds – the galley Professor Grinker sent me, the US edition (never read it) and the UK edition.

Now I don’t need three copies so I’m going to give away the US edition (which is also personally signed by Professor Grinker – as evidenced by my pointing digit) to one lucky person (willing to post anywhere in the world).

grinker

So how to choose who to give it to?

Here’s a photo of the Green our Vaccines brightest lights. What I want you to do is caption it. The rules:

1) Nothing defamatory!
2) No swear words that begin with c or f
3) No reference to Evan McCarthy
4) Do as many as you like
5) Funny = good
6) No photoshopping the image
7) Post your entry either in the comment section of this post or in a separate post on your own blog and post the link to that here.

Go!

(click for bigger version).

The Art of Green Our Vaccines

9 Jun

Before the “Green our Vaccines” rally (already much discussed–such as here, here, here, here, here), I spent a lot of time thinking about what sort of questions I would ask Jenny McCarthy and Jim Carrey if I had the chance.

I don’t know how much time Arthur Allen put into thinking about the problem, but I do know he nailed it with two succinct questions.

As part of his story on the rally, he recounts his brief opportunity to pose questions to the couple. Ms. McCarthy and Mr. Carrey passed near him at the same time that they were allowing an opportunity for “sound bites”. Art saw an opportunity and got a few quick questions in, as he recounts:

At which point I saw my opportunity and after checking for rally monitors, asked, “How many vaccines, exactly, is too many?”

“Too Many, Too Soon” is the slogan. It’s on the back of about 500 T-Shirts (with one each on Jenny and Jim). Given that, you’d think they’d have a damned good answer. At the very least, a reasonable, on-topic “sound bite”. Instead they answered (again as recounted by Art):

“In 1983,” McCarthy said, “our kids only got 10 vaccines. Now it’s 36” (actually, it’s 28, max, by age 2). I asked, “So should they only be getting 10? Which ones shouldn’t they get?” I saw McCarthy turning and asking someone, “Who is this guy?” Carrey responded, gamely. “Kids aren’t a bottomless pit you can pour toxins into, there has to be a limit,” he said.

Was that a sound bite or were they just caught flat-footed? Thankfully, Art had a great followup question which shows us the answer:

“So what’s a vaccine they shouldn’t get?” I asked. “A lot of parents of autistic children would have opted not to get the tetanus shot,” he said.

Huh?!? Tetanus? Wow, did I miss the Andy Wakefield study on Tetanus in the guts of autistic kids? Or, was it the Mady Hornig rats with Tetanus study? No, wait, isn’t the Generation Rescue motto, “It’s the tetanus, stupid”?

The answers are “no” to all of the above.

Generation Rescue (who have Jenny as their board-member/spokesperson) doesn’t mention “tetanus” at all on their vaccine page. As in, no “tetanus vaccines cause autism” statements. However, in the link to their “favorite” vaccine schedule (which is a recipe for disaster in this person’s eye), they include tetanus. Yep, they “recommend” kids get tetanus shots. In their number II recommended schedule, they include tetanus 5 times, starting at 2 months (is that “too soon”? as in “too many too soon”?). Their number III (and final) schedule has tetanus 3 times.

Is it possble the Generation Rescue spokespeople don’t know about their own recommended vaccine schedules? Is it possible that in months of planning, Jim and Jenny never prepared for what is one of the most obvious questions?

Jenny. McCarthy has awarded herself an honorary doctorate from Google U in vaccines and autism. From the above exchange with Arthur Allen, it looks like she and Mr. Carrey just failed their “Google SAT” in the “alt-med” view of autism and vaccines. (Let’s not even go down the path of how badly they would fail the entrance exam to Google kindergarden on the actual science of autism and vaccines.)

Don’t look for them to get caught like this by a journalist again. First, don’t expect real journalists to get access often. If they do, all future questions will likely be met with “Generation Rescue has some alternate schedules on their website”. (without noting that “alternate schedule” means “measles outbreaks are Jim-Dandy”).

This time, however, there was a real journalist and he caught them unprepared. Now we know that Jenny McCarthy and Jim Carrey have basically no depth to their understanding of even the alt-med version of vaccines and autism. Anyone surprised?

But, hey, the day wasn’t a complete waste for Jenny. Access Hollywood named Jim and her the “Green Couple of the Week”. Can someone find this Grand Award on the Access Hollywood website? I admit I didn’t try hard (I’m not trying for a Google Ph.D. in “Access Hollywood”), but is this a…dare we say it….fake award? Sorta like Dr. Corbier and the “Rock Award”? (OK, that one is kinda obscure–tossed in for those who followed the Omnibus too closely.)

Which leads me to the last thought–Jenny has a Google Ph.D. and a fake award…heck, if she could just use the library and go to a couple parties at UCSF, she could be an expert witness for the Autism Omnibus. (Think Vera Byers).

Art, should you read this, I (without consultation with anyone) award you the “LeftBrainRightBrain” Award for Excellence in Journalism. For those who will accuse me of making it up right now–ha!, I made it up a few weeks ago and secretly gave it to AutismNewsBeat.

Autism Recovery

8 Jun

I don’t get autism recovery. I don’t get what its supposed to be. I’ve been told (as has the world) that chelation can offer a 100% recovery, leaving the child indistinguishable from their peers.

I’ve been told that recovery means that a child no longer carries a diagnosis of autism.

I’ve been told that recovery simply means a previously non-vocal child now speaks.

I’ve been told that recovery is not the same as cure, but nobody gave me a cogent reason as to why not.

I’ve been told that recovery means a child can attend a mainstream scholastic setting.

There are so many ‘recovery’ merchants on the web (and also in Washington DC last Wednesday) who all want to tell the world that ‘recovery is possible’ and that their child is ‘recovered’.

On a popular biomed site for example there is a section where parents have sent in stories of their kids recovery. Oddly however, only 7% of those stories recount a child no longer having a diagnosis of autism.

Over on Kristina’s blog, a discussion regarding Jenny McCarthys latest interview turned up this nugget:

Jenny was jumping all over the board last night in the interview with Greta. She used “recovered” and “recovering”, then seemed to say that he was still autistic, but didn’t have any symptoms at all any more.

She stated that Evan had been diagnosed as autistic in the past, but that his current neurologist says that he never had autism. She reconciles this discrepancy as proof that Evan has been cured by her interventions.

McCarthy (who maybe concidentally was apparently still smoking in 2003/04 – two years after her sons birth) related an incident from May 2007 at the recent Autism One event:

Evan still suffers from seizures, the last one, he just had last May that no one kind of knows about yet, was horrible. He seized on and off for seven hours and then we had to put him in a coma for four days to make him brain dead to stop the seizing because he’d previously gone into cardiac arrest, and there’s so many kids out there with seizures had passed because of that reason. We had to induce a coma, it took him another month to walk again or talk again.

First off that is terrible. My heart went out to McCarthy when I was sent this. I cannot imagine how terrifying that must have been for her – and of course for young Evan too.

But does this sound like a recovered child to you? A child indistinguishable from his peers?

Thank goodness those (no doubt AAP members) mainstream doctors were there to help this poor little boy.

So what is recovery? To me, in all the YouTube videos I’ve seen posted by people convinced their child has recovered it seems most commonly to mean a clearly autistic child who has improved in certain key areas over time and has learnt a variety of coping mechanisms. Beyond that I have no idea.

Omnibus Autism Proceeding closing statements: thimerosal

7 Jun

While the vaccine hearing is not entirely concluded, apparently the portion where the public can listen in by phone, or download the audio, is over. There will be a little more testimony in July from some experts for the government who couldn’t make it in May, and the petitioners will probably have some of their experts back to try to rebut what those experts have to say.

For this blog entry I have transcribed the of the end of Mr. Powers’ closing argument for the parents’ lawyers (the Petitioners Steering Committee, aka PSC) and all of Mr. Matanoski’s closing argument made on May 30th, Day 15 (the relevant audio clip is found here.) My take on Mr. Powers closing remarks summing up the case the PSC had made for the mercury parents’ side was that he spent perhaps most of it whining about how mean the Dept. of Justice lawyers were (!) and explaining how rules of discovery are applied in civil court (which is apart from how discovery is handled in vaccine court.) I don’t remember him making any big points on how his experts were right, but maybe I missed them.

Where my transcription begins, Mr. Powers had just been explaining that they expected more science to come in that would be supporting their side and that they’d be sending it to the Special Masters and to the DoJ lawyers hot off the press, apparently. Considering the kind of stuff that the PSC has presented at the last minute previously(several times) I wouldn’t think that what they see as being in the pipeline would have any weight to it. What’s bizarre, in my opinion, is that the PSC has been saying that the science that supports their position was being finished up and would be “in” any minute now, for about the past 4 or 5 years.

Mr. Powers: … The petitioners will do everything that we can to bring that information to the Special Masters, to share it with the respondent, but ultimately with the idea that litigation strategy in this program is really not what should be driving the consideration of the science but ultimately,again the unique position of the respondent here reflecting the responsible of the mission to keep up to date consider the science, protect public health, consider the science and and apply it in a way that’s gunna provide the best information to the three of you in deciding the general issues and the specific issues in all of these cases. Thank you.

Special Master Campbell-Smith (?): Mr. Matanoski.

Mr. Matanoski: Thank you ma’am. In putting together my closing remarks, though the time that we have is brief, I would feel it would be tremendously an error on my part not to acknowledge the families that were involved here, Mead and King family. probably the most poignant moments in this trial was hearing the … testimony of Mylinda King and George Mead discussing William and Jordan. We thank them for their participation. Certainly our hearts go out to them and to all the families that have autistic children. We may be litigating one side of this issue but we certainly have tremendous respect and admiration for all of them.

You have a threshold matter before you that’s a scientific matter, however, that you must address.
And obviously a scientific question necessarily turns on scientific evidence and there are certain legal standards that must be applied in this courtroom and every courtroom to how you handle scientific evidence, indeed what can even be considered reliable scientific evidence. The supreme court has spoken: it’s evidence that must be tested, subject to publication and peer review. It’s evidence that has general acceptance in the scientific community.

On the PSC side of the ledger of the evidence you have not heard that yet, you’ve heard speculation– pure and simple.

What you’ve heard in terms of comments from Mr. Powers this morning suggests that that evidence as far as the petitioners are concerned, the PSC is concerned, is still not available. He talks about the dynamics of science, and ongoing studies, which in some ways may imply a lack of evidence, scientific evidence that is available to the PSC, at this point, to prevail.

Now the PSC’s case started with a curious approach they put on evidence, or put on testimony, that was designed to undermine evidence against their claim. That was the testimony of Dr. Greenland, but Dr. Greenland’s testimony and his whole postulate depended on a supposition. The supposition was that the petitioners would prove to you a case that their mechanism applied to clearly regressive cases only.

Now you’ve heard from Dr. Deth and his hypothesis, who said that it did not apply only to clearly regressive cases.

You heard this morning from Kinsbourne who said that he hasn’t even looked to see if his hypothesis would have any application to non-regressive cases. So he can’t even address whether his hypothesis is only limited to clearly regressive cases.

All of the abundant epidemiological evidence that has addressed the precise matter that is whether thimerosal containing vaccines can cause autism or are associated with autism is back on the table. It never was off. Dr. Greenland’s supposition is in error.

If you follow the mechanisms proposed by the PSC here to their logical conclusions they fail to show that thimerosal containing vaccines are the cause, They propose that inorganic mercury is the causative agent. Inorganic mercury is not specific to childhood vaccines, it’s in what we eat, it’s in the air we breathe. It may be, if we have poor dental health, it may be in the fillings in our mouth.
They fail to specify how much inorganic mercury is necessary to cause autism
their experts consistently refused to say, in fact when they did say they essentially said, any amount.
They’ve pushed the threshold down so that any exposure to inorganic mercury could be a potential cause for autism.
They’ve described causal mechanisms that are so general that they apply to virtually every disease and to every case of autism.

Oxidative stress is seen in conjunction with almost every disease. You even see it after trotting or jogging you even get it after you bang your thumb … hammering in a nail.

Neuroinflammation is seen in a variety of neurological diseases including Alzheimer’s and Parkinson’s disease for example.

And in the Vargas study every single autistic patient in that study had neuroinflammation: regressive, non-regressive, young and old alike. These are nonspecific causal mechanisms that are proposed to you. In the end you could just as easily conclude that a tuna sandwich or a dental filling could cause autism, as a childhood vaccine. And to flip it around you could just as easily consider that an 80 year old man who received a flu vaccine would get Alzheimers from it.

Mr. Powers commented about uh what I describe I guess is, or his description, of a smear campaign or heavy handed treatment of the petitioners experts. You take the witnesses as they come. Now perhaps there was an explanation and you’ve heard it for the events that transpired with his departure from the University of Toronto. But again you take the experts as they come. When Dr Deth and said that he is willing to come before you say that his hypothesis you should rely on it to make a finding of this import, even though he’s not willing to say to the scientific community that it’s acceptable without further testing, I think that bears consideration.

Dr. Kinsbourne when he sat in the witness chair, he put his credibility on the line. He’s coming before you saying, “Rely on me. Believe me, Trust me as an impartial scientist.” Because that’s how he’s coming to testify to you. You deserve to know whether he gets that kind of trust.
You know, he’s known to you, you’ve seen him here many times. If you go back and look at the cases that are currently active in front of the Special Masters’ office you’ll find that he’s retained or offered an expert opinion saying vaccines cause harm in over 30 cases. In the past year he’s authored one article in a medical journal. I think that tells you whether he’s coming to you as a witness who spends his time in the courtroom or as a, an impartial scientific expert witness who is adding some value to what your deliberations are from the point of view of reliable science.

And good science and reliable science comes from testing, publication, critical review, validation, verification of results. It’s performed by those who work in the fields, apply scientific method to their research.

The supreme court tells us that it can’t be untested hypotheses, as Dr. Deth has essentially described his causal mechanism.

And good science won’t be first revealed in the courtroom as Dr. Kinsbourne’s hypothesis is. But it’s going to see the light of day through critical discussions of the research among the scientists themselves.

It’s not reliable science, indeed it’s not any kind of science, to sit at your computer to take your last litigation driven report, run “find and replace”; find “measles vaccine” and replace it with “thimerosal containing vaccine.” A litigation driven contrivance such as that has no place in the courtroom. The supreme court has mandated that.

Now when the trial began, Mr. Powers described thimerosal containing vaccines as a relic of history.
Perhaps that was a reference to allowing some leeway, in what your evidentiary standards are, would be to (provide) some grading on the curve as to the science you would accept. In fact they’ve done to make this anything but a relic of history. The day that they said that they held a press conference to discuss the case. Their experts are here are telling you that trace amounts of mercury that are in vaccines, that the flu vaccine could be enough to cause autism.

Whether we like it or not, this issue before you is of great importance the issue before you, great attention has been drawn to it.
Just last week TIME magazine had vaccines and the safety of vaccines as a cover issue.
Many eyes are going to be turned to this court to see how you handle the scientific evidence before you and it’s not just the parents in front of you who have brought claims,
it’s for parents who haven’t brought claims who have autistic children and who are wondering if by getting them vaccinated they are somehow responsible for that condition,
it’s for scientists who work in relevant fields,
it’s from those who treat autism,
and it’s going to be viewed by parents who are wondering whether they should get their children vaccinated or not.

I’m going to be blunt at this very late hour and having brief remarks. Are you going to decide that question on the say-so of Dr. Deth and Dr. Kinsbourne, or you going to decide that question on the evidence given to you by witnesses like Dr. Catherine Lord, Dr. Eric Fombonne and professor Sir Michael Rutter.

Are you going to look at and consider the fact that every reputable … independent medical organization that has considered this issue the Institute of Medicine, the American Academy of Pediatrics, the European Medicine Association, the World Health Organization, have all concluded that thimerosal containing vaccines do not cause autism.

Are you also going to consider that every court that has had to consider this claim before it, before you have considered it, in fact, has found that the claim is so lacking in merit that it should not even be presented to a jury.

Reliable scientific evidence at this point is all on one side of the ledger. Vaccines don’t cause autism. Thank you.

The audio clip:
http://static.boomp3.com/player.swf?song=bcjjum1boomp3.com

Mitochondria and autism:time to recalibrate

6 Jun

We all have heard a lot about mitochondria and autism in the past few months.    This message has been dominated for the most part by David Kirby.  Someone got some of the confidential court documents to him, and he leaked one to the public, and discussed another in a news story. 

So, it seems like we are stuck with the idea that “there are a lot more Hannah Polings out there” and “20% of autistics might have mitochondrial disorders” and “1 in 50” (or some such number) “are at risk.” Since the Polings aren’t releasing their information, the government isn’t releasing it’s information, the reasearchers can’t talk and haven’t submitted their paper yet,  we are sort of stuck.  There just isn’t any other specific information out there on people with mitochondria issues and autism.

Is this really the case?

As it turns out, no, this is not the case.  There are a number of descriptions of people with mitochondrial disorders and autism.   And, guess what, they present a different story than we have been fed so far.

We all know about the case study on Hannah Poling.    But, in terms of how many kids (and, presumably, adults) have mitochondrial disorders come from Dr. Oliveira’s group in Portugal.  People tend to use the estimate for autism+mitochondrial disorders from his work (about 4%), but they don’t look closely enough to see that he actually describes a few details on 11 individuals.  In addition,  Dr. DiMauro’s group discussed five individuals in their paper. Gargus of UCI discussed three brothers as well.  Most recently,  Tsao and Mendell discussed two individuals in this paper.

Total it up, and we have information on 22 individuals to consider when we ask the question, “what does autism look like in mitochondrial energy challenged individuals”?

Another way to put it, does mitochondria+autism=Hannah Poling?  Did they all undergo regression ?  Of those that regress, did they all appear normal before regression?   I want to know, because this is what we are being told: autism with mitochondrial disorders/dysfunction result in kids who look normal and then regress.

We get this from David Kirby, who makes statements like:

“That would mean some 190,000 Americans with mito issues who, after normal births and development, suddenly stopped talking and regressed into autism following some kind of childhood fever.”

He seems to be getting this from statements in Hannah Poling’s Rule 4c reports and discussions with the researcher who made them.  Statements (from the Rule 4c report) that describe Hannah Poling as having:

“an etiologically unexplained metabolic disorder that appear[ed] to be a common cause of developmental regression.” He continued to note that children with biochemical profiles similar to [Hannah Poling] develop normally until sometime between the first and second year of life when their metabolic pattern becomes apparent, at which time they developmentally regress.”

David Kirby also uses comments from the researcher stating that he is working on a study of 30 kids similar to Hannah Poling who all underwent regression.  In that as yet submitted study, only Hannah Poling is considered a definite case of vaccine injury.  There is another child whose regression did occur within 7 days of a vaccination.  Somehow, this “possible” case of vaccine injury morphs into a “definite” in the later sections of David Kirby’s blog piece.   I also find it odd that David Kirby claims that people are already preparing to challenge the idea that only 2 of the 30 are possibles.  This, even before the paper is submitted!

Given all the qeustions that are raised, I’d like to know more about what kids with mitochondrial disorders and autism look like.  Don’t you?

The Kids

Let’s first take a look at the DiMauro group paper.  DiMauro’s group discusses 5 kids.  Of those patient 5 had a fever at 14months and showed regression. “At 14 months of age, she had a viral illness with high fever, encephalopathy, regression of previous acquired skills, and significant acidosis. She gradually recovered and continued developing slowly.” Sound like Hannah Poling?  Consider however that she showed developmental delay by 6 months (along with a number of other problems). She did not appear “normal” as Hannah Poling is described before her regression.  Another big difference: Patient 5 had clear mitochondrial disorder.  She has 70% mtDNA depletion in a biopsy sample.  While she is described as “gradually recovered”, she never spoke and is significantly challenged in many areas.

And that is the closest example we get to Hannah Poling in these studies

Patient 3 in the DiMauro study is described as having “…neurologic deterioration during intercurrent illnesses and recovered gradually over several weeks.”  However, he doesn’t fit the “Hannah Poling” mold as he had clear impariments since early infancy.  

The other three patients in the DiMauro study did not have any mention of regression.   There is an Aspie, a PDD kid and a kid with excellent visual/spacial skills but delayed speech and language.

OK, so the DiMauro study doesn’t have “Hannah Polings”.  What about Oliveira?  He describes 11 kids with possible, probable or definite mitochondrial resperatory chain (MRC) disorder.   Of these 11, only 1 is noted as having an “autistic regression”.  (No, it is not noted if this was coincident with vaccination).

One interesting fact in the Oliveira paper: they were studying older kids.  All the kids (with mitochondrial disorder or not) were in the 11-14 year old ages.  Why do I find this interesting?  Because I read a lot of people postulate on the web that Hannah Poling no longer shows “biomarkers” for mitochondrial dysfunction and, thus, thet disappear with age.   People are trying to say, essentially, “A lot of older kids were probably ‘Hannah Polings’ but their tests won’t show mito dysfunction because they are too old” as in, “they were vaccine injured even though we have no proof.”   Since these same people tend to rely on Oliveira’s data to estimate the prevalence of mitochondrial disorders in autism, it seems a bit of a stretch.

In our search for more “Hannah Polings”, we seem to be striking out.  But, there are still two more papers to consider.

Tsao and Mandell describe two patients.  Both were globally delayed from “the early months of life”.  Neither child developed expressive or receptive language, and one never sat up or walked.  Again, these were not “apparantly normal” kids who went through regressions.

Gargus and Imtiaz describe three children, all siblings, who have “a weak mitochondrial defect and a recognized 15q inverted duplication” (we’ll discuss some genetics in another post). The older had poor eye contact and echolalia from early infancy. He developed stimming behavior at age 3 and, sadly, died after a one-day illness at age 5.

OK, sidetrack here.  The authors describe this as  “At age 5, after a 1-day illness, he died suddenly with respiratory arrest and shock, characteristic lethal presentation of a carnitine-deficient fatty acid oxidation”.  In other words, illness can be fatal to the energy challenged.  This is precisely why doctors recommend vaccinating people with mitochondrial disorders, or at least, their close family members.

Back to the paper, the younger twin bothers (monozygotic, monochorionic) hit their developmental milestones in their first year. However, they showed language delay and limited eye contact. One had a near-SIDS event at 4 months, and was the more “severely affected” of the two.

So, the kids in the Gargus study aren’t “Hannah Polings” either as they didn’t regress and showed signs of being “not normal” from early in life.  Now, I suspect people will latch on to the “near SIDS event” at 4 months and suggest that is connected to 4 month vaccines.  No mention of vaccination is made in the paper.

Discussion

There is a huge variation in the presentations of the individuals in the above studies, leaving one to ask, “what can we take away from all of this?”.   One answer is that the huge variation is precisely one of the take-away points: if you think that autism is a spectrum disorder, you shouldn’t be surprised that the mitochondrial energy challenged present as broad or broader of a spectrum.

Second, everyone keeps looking to mitochondria+autism=”must be regressive”.  It just isn’t so.  The “30 child paper” will apparantly concentrate on regressive kids, but the other papers already published do not.

The majority of the individuals described in the DiMauro, Oliveira, Gargus, and Tsao papers show no regression. Of those who do regress, they were not “developing normally” before the regression.

The Bottom Line

The bottom line: Hannah Poling does not appear to be a good representative of the kids with mitochondria issues and autism.   The individuals discussed in papers other than the Hannah Poling case study are very different from her.  Even the other kids in the paper that will concentrate on regressive autism are mostly not like her in one major aspect: they didn’t suffer vaccine injury.

Does that mean that we can’t and shouldn’t learn from Hannah Poling?  Absolutely not.  But, we need to have experts look at and understand all the kids with mitochondrial disorders and autism.  We need this to be a scientific investigation to arrive at real answers, not a series of public relations events to shape the public view.

Green our vaccines – the outreach effort

5 Jun

Whilst Team McCarrey were busy wowing the ‘hundreds‘ of people at the Green our vaccines rally yesterday, one face was notably absent from proceedings.

David Kirby was in good old Blighty, enjoying our lovely summer drizzle and grey skies.

Mr. Kirby will speak about recent legal, political and scientific developments in the United States in the ongoing vaccine-autism controversy. The briefing is open to Peers in the House of Lords, Members of Parliament, their Staff, members of the Media, and Invited Guests. It is sponsored by His Lordship Robin Hodgson, Baron Hodgson of Astley Abbotts, Shropshire.

Now, I’ll come clean. David and I had tried to arrange a meet up so we could rage amicably at each other over a huge quantity of alcohol. Unfortunately, as it so often does, life intervened and I had to cancel.

This meant I also couldn’t attend his talks.

However, I could do something. I could ask my MP to formally protest David’s presence in Parliament to brief Lords, Peers and MP’s. Truth be told I was pretty annoyed by this – why is it so easy for a journalist to swan in and command the attention of the government and opposition and yet untold hundreds of autistic people and their families never really get a look in.

My MP was agreeable and did a bit of reading up on the issues David would be talking about in his briefing so he could debate if needed as well as protesting on my behalf.

Turns out that this wasn’t strictly necessary. When my MP reported back to me this morning he told me that David was briefing an audience of one (1) MP (mine, who only attended as I asked him to) and four Lords (one of whom was David’s sponsor I would guess and his cronies). No press attended, aside from a few people/press my MP described as “….obscure journalists who have become consumed by this issue.” so I’m thinking probably oneclickgroup, JABS and various other marginal nobodies.

So, not the most auspicious of presentations. As it turns out though, something of a blessing in disguise – my MP seems quite keen on me getting the chance to present myself which would be interesting.

Unstrange Minds – UK release

5 Jun

I wrote about Unstrange Minds in 2006 when it was first published in the US only.

Cover of Unstrange Minds

It gives me huge pleasure to note that Icon Books have now released the UK version (also available on Amazon UK.

I loved Unstrange Minds unreservedly. Professor Grinker sent me a galley copy to read before it was published and I read it in a couple of weeks worth of train journeys to and from my workplace. So absorbed was I that I very nearly missed my stop more than once.

Its a book about two things. Firstly it is a Fathers paen to his autistic daughter. The love and respect he has for his daughter permeates every single page. It is clear that he finds his daughter fascinating and wonderful. Through the pages, we do too.

Secondly, it is a book about the ‘autism epidemic’ or rather the lack thereof.

The shift in how we view autism….is part of a broader set of shifts taking place in society.

Grinker goes on to take the reader through the often fascinating history of autism as a diagnostic label (Kanner is pronounced ‘connor’ – who knew??) to illustrate his theory of the apparent rise in autism prevalence being intrinsically linked to these cultural changes such as the growth in child psychology as an area of practice, the decline of psychoanalysis, the rise of advocacy organisations, greater public awareness to educational needs and change in pubic policies:

Doctors now have a more heightened awareness of autism and are diagnosing it with more frequency, and public schools….which first started using the category of autism during the 1991 – 1992 school year are reporting it more often….Epidemiologists are also counting it better.

One of the most fascinating parts of the book for me was Grinker’s exploration of autism in non-Westernised cultures such as South Africa and Korea. In some ways it was like reading about how autism was viewed here 20 years ago.

When [Milal School] was being built in the mid-1990s, some of the wealthy residents of this quiet neighborhood south of the Kangnam River in Seoul picketed the site, cut the school’s phone lines, physically assaulted school administrators, and filed a lawsuit to halt construction, because they believed that the presence in the neighborhood of children with disabilities would lower property values. The school opened in 1997, but only with a compromise. It was required to alter its architecture so that the children were completely hidden from public view. Some of the protestors were brutally honest. They said they didn’t want their children to see or meet a child with autism.

That seems (and is) outrageous to us but 20 years ago I can easily imagine this happening in the West. One only has to look at the recent experiences of Alex Barton to see how quickly the West can regress to barbarism.

I can’t recommend this book highly enough. Go buy it now.

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;

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.

← Older Entries
Newer Entries →