Archive by Author

Neurodiversity on Good Morning America

11 Jun

Ari Ne’eman and Kristina Chew were interviewed for a segment of Good Morning America that aired today. Ari Ne’eman is the president of the Autism Self Advocacy Network and Kristina Chew writes the AutismVox blog.
NIH director Tom Insel was also interviewed.

Ari Ne’eman noted:

“Anti-cure” doesn’t mean “anti-progress”.

Unfortunately, the idea of “anti-cure” gets a lot of attention and I can understand why a news show would latch onto it. I personally see this statement as more important:

I can’t think of a civil rights movement thoughout history that hasn’t been faced with resistance and misunderstanding on the part of it’s detractors.

That’s what this is–a civil rights movement. A movement to say, “people are people”. It isn’t about autism: there are six billion different places on the spectrum of humanity, each spot filled by an individual who has rights and deserves respect. Some of the places on the spectrum need more support. Some, much more support.

It is not the “burden” of society to care for those with greater needs, as the situation is often represented. No, it is the responsibility of those with greater gifts to offer support to those other full members of society who are in need.

Kristina notes that “she is not suffering”. But, she goes on to note that parents need better supports and services and education for their kids. Who can argue with that?

Tom Insel, director of NIH notes that there are people with very great challenges on the autism spectrum. For those he states:

“…for whom we would love to have a cure, to at least get them to a point where they would be able to function as well as the people in this movement.”

Dr. Insel, thank you. Let’s help people make progress. This sounds very much like a neurodiversity parent who has stated:

What we wish to do is help them to grow to a point where xe can make such a choice. And make no mistake, if a cure was ever developed and if xe wanted it, I would ensure xe got it.

But, again, I think people will latch onto the “cure” question. The point as I see it is to help people make progress. The point is that especially for those who don’t make much progress, let’s make sure that they are given the supports be they physical, social, whatever it takes to live their lives with dignity. We are in the early stages of a civil rights movement.

The Omnibus Autism hearing: Dr. Deth and the duck brain mystery

11 Jun

In my blog entry about Dr. Johnson’s testimony in the Omnibus Autism hearing I mused that:

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

.

I thought it might be worth blogging the issue of this irregularity in Dr. Deth’s expert testimony. I found where Dr. Deth’s powerpoint slides were made available on a website favorable to his hypothesis. It was very kind of them to do that. Here is that slide of Dr. Deth’s that Dr. Johnson had commented on. It gives comparative levels of cystathionine as found in various animal brains and human brain.

The above lovely graph was apparently created by Dr. Deth for the expert report to the Special Masters of the vaccine court. Dr. Johnson noted that there is no reference on the slide indicating which paper it came from. One would expect to see a citation like, “Stott, 2001,” or “Wakers et al., 1999,” the absence of which made Dr. Johnson wonder if the graph represented some research done by Deth himself. But Dr. Johnson was surprised by the seemingly odd “duck” in the list of animals. So after Deth had given his testimony, Dr. Johnson did a Google search for the words “duck” and “cystathionine” and in no time he had downloaded a pdf of the very paper the duck data had come from. I did the same Google search and likewise in no time had downloaded the same paper. If you click here you can (automatically) download that very paper for free. The title is L-CYSTATHIONINE IN HUMAN BRAIN. The authors are Harris H. Tallan, Stanford Moore and, William H. Stein. It was published in 1958.
And if you do access that paper and read it you will find the following table on page 7 of the pdf.

It looks as if Deth warmed-over this half-a-century-old data and averaged the amount of cystathionine in the 5 human-brain samples and came up with about 45 mg/per 100 g wet weight for his graph and it looks like he decided not to include the data from horseshoe crab brains. The original table reports the cystathionine in “mg. per cent”. Deth faithfully included the cat, cow, rat, guinea pig, chicken, monkey and duck levels, as well as the human liver, kidney and muscle levels.

As I remember, Dr. Johnson pointed out that that data on cystathionine in brain tissue of humans and rats, cats, cows and ducks didn’t make the point that Dr. Deth want to make with it anyway, but one has to wonder why he took the data that was in a 50 year old paper in table form and turned it into a histogram looking all modern and freshly churned-out by Excel and all. And if Deth thought it was necessary to make the point he needed to make, shouldn’t he at least have cited the paper properly?

When I was writing science papers for assignments at the college level a couple of years ago, it was drummed into all the students in strong terms that we should not ever plagiarize anything, or even to take the chance that something might look plagiarized. Professors warned their classes that the Internet was a powerful tool for digging up the true sources of plagiarized quotes (or entire plagiarized papers) and for finding the proper attributions for un-attributed graphics or statements, or creations of any kind. Plagiarism was, and still is, grounds for being tossed out of most colleges and universities, as I understand it, and students don’t get to claim that they didn’t know any better. One would think that professors would be held to an even higher standard.

white duck head photo by law_kevin on flickr.com

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