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Ari Ne’eman on autism

16 May

Ari has had a quite wonderful piece on him in Newsweek. It takes on the hard questions for Ari and he answers them with the aplomb that has come from years of hard work of learning to be an excellent networker:

Ne’eman battles a strange kind of image problem: his critics accuse him of not really being autistic. His mother, Rina, is particularly sensitive about this. “People who see Ari today have no idea where he’s been,” she says. As a young child, Ne’eman was verbally precocious but socially challenged. “I didn’t understand the people around me, and they didn’t understand me,” he says. He was bullied and ostracized—back then he didn’t look at people; he flapped his hands and paced incessantly (he still does both today); he brought newspapers to elementary school as leisure reading. “I think the word ‘freak’ may have come up,” he says. He was, at one point, segregated from his peers in a special-ed school. That led to struggles with depression and anxiety so severe he would pick at his face until it bled. I asked Ne’eman how he manages all the professional mingling he does today. Small talk makes him uncomfortable, but he’s learned to play along. Still, none of it is easy. “You come out of a meeting and you’ve put on a mask, which involves looking people in the eye, using certain mannerisms, certain phrases,” he says. “Even if you learn to do it in a very seamless sort of way, you’re still putting on an act. It’s a very ex-hausting act.”

This is a common attack tactic from people like Jake Crosy at AoA or Harold Doherty. They demean the efforts that autistic people such as Ari have needed and still need to put into their lives to advocate for their own beliefs in favour of the promotion of their own limited and limiting set of autism related beliefs. But as history has shown, its people like Ari – those who are willing to be openly challenged about what they think who will win the respect of people.

Well done Ari, I’m proud to think that you are representing all manner of people on the spectrum, from the very high functioning Jake Crosby to the very low functioning such as my daughter. Thank you.

Autistic man dies

12 May

In November 2005, 26 year old Mr Jesse Moores died after choking to death on ‘a golf ball sized piece of food’.

Moores was autistic with a low IQ (therefore classed as ‘severe’. He was described as having the mental age of 8). He lived in the Chine Care Home in Enfield, North London, a residential group home owned and operated by Robina Care Group Ltd. He had a history of choking incidents.

The day Mr Moores died, the home was being managed by Deputy Manager Patience Etchu-Abangma. Also on duty with her that day were two agency care workers.

It transpired during court proceedings that Etchu-Abangma had a secret second job and that she had left the home on that day to work at that secret second job. Before that fact came out however, she lied and said she was out shopping at Boots.

When one of the two agency staff called Etchu-Abangma to tell her that Mr Moores was choking to death, Etchu-Abangma told her not to phone an ambulance for 15 minutes. This gave her time to leave her second job and return to the care home. Only then was an ambulance called.

During the police investigation following Mr Moores death, Glen von Malachowski, who was chief executive of company Robinia, said ‘shit happens in our business’.

Some people are pure scum.

http://www.telegraph.co.uk/news/uknews/4801880/Care-home-left-illegal-immigrant-in-charge-as-resident-choked.html
http://www.disabilitynow.org.uk/latest-news2/care-group-fined-a31-4m-in-jesse-moores-case
http://www.google.com/hostednews/ukpress/article/ALeqM5gFQx9OWLwIuu90RSisqLabRiVZ7w
http://www.thisislondon.co.uk/standard/article-23678359-details/S**t+happens+,+says+boss+after+care+home+death/article.do

Jack Coleman talks back to Jim Carrey, Jenny McCarthy

12 May

Foxnews.com carries a story about Hero’s star Jack Coleman discussing autism and vaccines.

…in his belief the “autism/vaccine” link was unwarranted.

“My sister is a pediatrician and she is not beholden to pharmaceutical companies, which, I know, that’s the big conspiracy theory out there. They did huge research in Europe and they have not found any ties to it at all, there is no longer live mercury in any of these calculations,” Coleman told Tarts. “I just think that from what I’ve read and heard I don’t think it’s connected. I do know that there is a MMR that it makes your child extremely cranky and sick but I personally don’t it contributes to autism, but I am not a doctor.”

And despite McCarthy and her longtime lover Jim Carrey’s relentless lobbying to put pressure on the federal government to remove toxins from vaccines and fight for fewer childhood vaccinations prior to the age of 2, Coleman still supports immunization all the way.

“I have given my child every vaccination there is, but when you are related to a pediatrician, you tend to look much more kindly at vaccinations. As she says, ‘I’ve never seen a child die from an immunization but I have seen one die because of a whopping cough.’ What our grandparents would give to have those immunizations,” he added. “If five years from now, science says that it is the cause, then I will eat my words, but I don’t see that happening.”

A rep for McCarthy did not respond for comment.

Seems like there are maybe more smart celebs in Hollywood than I thought, Jennifer Garner, Amanda Peet, Jennifer Lopez and now Jack Coleman.

Generation Rescue: a dishonest autism charity?

6 May

Generation Rescue has a long history of promoting bad science. They even have tried their hand at it themselves before, with a phone survey that was so bad it would have earned a college freshman in epidemiology a failing grade.

So when they came out with their own “study” of vaccination rates around the world, you can imagine I didn’t expect it to be good. In fact, I just avoided it altogether until they sent me an email telling me how good it was.

So I looked.

It was worse than I expected. Far worse.

The “study” is here. Generation Rescue (GR) looks at the vaccine schedules for multiple countries and compares this with the infant mortality rate and autism rates in those countries.

I read it and, Oh…my…god… I expected bad science and poorly/biased interpretations. Instead, what I found was pretty clear evidence that Generation Rescue is knowingly distributing misleading information.

Before you get worried that this post is way long and question whether you really want to read the details, here’s the short version:

1) They compare infant mortality rates between the US and other countries–even though it is clear (according to their own expert no less!) that the US uses different criteria for infant mortality and it isn’t accurate to compare the US infant mortality to that in other countries.

2) They compare autism rates amongst countries to show the US has the highest rate, suggesting that the higher the number of vaccines the higher the autism rate. They just “forget” to tell you that the prevalences for the other countries are from old studies. We can debate why the reported autism prevalence is going up with time, but no one debates that the older studies report lower prevalences than we see now. So, why does Generation Rescue compare prevalence in the US using 2002 data for kids born in 1994 with, say, a Finnish study using 1997 data on kids born as early as 1979? I consider them very biased, but not incompetent enough to miss those fatal mistakes in their study.

3) They claim that the US has the highest vaccination rates and the highest autism rates. They conveniently ignore prevalence from Canada and the UK, which have comparable prevalences to the US and much much lower numbers of vaccines. Yes, you read that right, they left out the well known studies that would show that their conclusions are nonsense.

The worst part is that it is almost certain that Generation Rescue didn’t make an honest mistake. These are so obvious that whoever wrote that “study” had to know he/she was producing what amounts to the lowest form of junk pseudoscience.

For those who want the gory details, here they are:

Infant Mortality Rates

Generation Rescue points out that the reported infant mortality rate is highest in the United States, which also has the most childhood vaccines. All well and good, but can we really compare the infant mortality rates from country to country?

When I type infant mortality rate into a google search, the first hit is a Wikipedia page which, as it turns out, addresses exactly this question.The answer is a resounding “NO”, we can’t compare the US infant mortality rate with that of other countries.

While the United States reports every case of infant mortality, it has been suggested that some other developed countries do not. A 2006 article in U.S. News & World Report claims that “First, it’s shaky ground to compare U.S. infant mortality with reports from other countries. The United States counts all births as live if they show any sign of life, regardless of prematurity or size. This includes what many other countries report as stillbirths. In Austria and Germany, fetal weight must be at least 500 grams (1 pound) to count as a live birth; in other parts of Europe, such as Switzerland, the fetus must be at least 30 centimeters (12 inches) long. In Belgium and France, births at less than 26 weeks of pregnancy are registered as lifeless.

So, who wrote that 2006 article in US News & World Report?

Bernadine Healy.

Yep, the same Bernadine Healy that is Generation Rescue’s favorite “mainstream” doctor.

One has to believe that GR saw that article in Wikipedia and the US News article. They are, after all, Google Ph.D.’s. Given the author was Bernadine Healy, they have to have considered it accurate, don’t you think? And, yet, GR conveniently forgets to mention the differences in how the US and other countries count infant mortality in their vaccines cause autism “study”.

Autism Rates 1: Autism Prevalence by country

Start with the conclusion of the Generation Rescue “study”:

This study appears to lend credibility to the theory that the U.S. vaccine schedule is linked to the U.S. epidemic of autism, particularly when compared to the published autism rates of other countries.

Given this bold claim, it is critical that they use good data for the autism rates. By “good” I mean that they need data that they can accurately compare to the CDC reported prevalence of 1 in 150. That data was taken in 2002 on 8 year old children. I.e. kids born in 1994. Since reported prevalence numbers are going up with time, it would be very misleading if they were to use, say, prevalence numbers from the early 1990’s, wouldn’t it?

Any prevalence that they use would have to use prevalence numbers from about the same time, on kids of about the same age.

Here’s their table comparing the autism rates.

gr_table3

Let’s take a look at the studies they cited for their numbers, shall we?

Iceland: Prevalence of Autism in Iceland. This 2001 study uses kids from birth years 1984-1993. I.e. most (if not all) of the kids are from the time before the big upsurge in autism diagnoses. Hardly a good comparison to the 2002 CDC study, eh?

For Sweden, they use a paper called, “Is autism more common now than 10 years ago?” from The British Journal of Psychiatry. Published in… 1991. That’s pre DSM-IV. Amongst other problems, they won’t be including the other PDD’s in the autism spectrum, like the CDC study does. Besises, the kids from the CDC study weren’t even born yet, it was so old! Is there any wonder that the Swedish study shows a lower prevalence?

For Japan, they use a paper titled Cumulative incidence and prevalence of childhood autism in children in Japan. The study uses data from 1994 on kids who were born in 1988.

Are you starting to see the pattern here? Time after time, GR is comparing US 2002 prevalence data to much older data from other countries. Let’s go on:

For Norway, they use the paper Autism and related disorders: epidemiological findings in a Norwegian study using ICD-10 diagnostic criteria. The paper was published in 1998 on children 3-14 years of age. Simple math suggests they had kids with birth years going back to at least 1984 in that study. Hardly a good comparison to kids born in 1994.

For Finland, they use Autism in Northern Finland. Here is an updated version from 2005. The study uses data from 1996-97, on kids up to 18 years old. I.e. they are using kids that were born as early as 1979. Also, they are using data on patients from hospital records who used “communal health services”. Sounds a lot like “inpatient”–one of the critiques that GR uses against studies from Denmark. Also, the Finland study didn’t include Aspeger syndrome, as that was a new diagnosis at the time. Hardly a good comparison to the CDC study.

For France, they use Autism and associated medical disorders in a French epidemiological survey. This uses “French children born between 1976 and 1985”.

For Israel, they use Autism in the Haifa area–an epidemiological perspective. This paper looks only at autistic disorder (no PDD-NOS, no Aspergers, no Rett’s no Childhood Degerative Disorder). Right off the bat that reduces the prevalence and makes it impossible to compare the the CDC 2002 study. The Israell study also is, you guessed it, based on kids older than the CDC study: children born between 1989 and 1993.

Last, Denmark. If you’ve been following the thimerosal debate, you know this is going to be ironic. They use Madsen’s paper, Thimerosal and the Occurrence of Autism: Negative Ecological Evidence From Danish Population-Based Data. Generation Rescue refers to this study (incorrectly, I might add) as “This one goes beyond useless”. I guess “useless” is only when it is used to refute the thimerosal hypothesis? Come on, GR, this level of hypocrisy is just painful.

Missing Studies

There are some very well known studies that Generation Rescue somehow forgot to include in their “study”. Could this be due to the fact that they are very good counterexamples to the vaccine-hypothesis ? Let’s look at some and see, shall we?

United Kingdom: Pervasive Developmental Disorders in Preschool Children: Confirmation of High Prevalence ( study performed in 2002 with a prevalence of 1 in 170), and Pervasive developmental disorders in preschool children (study performed in 1998/9 with a prevalence of 1 in 160).

Canada: Pervasive Developmental Disorders in Montreal, Quebec, Canada: Prevalence and Links With Immunizations (birth years 1987 to 1998. Prevalence 1 in 154).

Wow, the United Kingdom and Canada have prevalence numbers comparable to those in the US!

So, let’s complete the comparison, shall we? What is the vaccine schedule like for the UK and Canada? Using the Generation Rescue “study” we get 20 vaccines for Canada and 21 for the UK.

Wow, that’s way less than the US (with 36), and they have the same autism prevalence as the US? How could that be? Is it, perhaps, that the autism is NOT related to the number of vaccines in a given country’s schedule?

Anyone doubt why GR left the UK and Canada off their table of Autism Prevalences Around the Globe? No, I am not giving them a pass that this could be an honest mistake.

To quote Generation Rescue’s top funny guy (Jim Carrey), “How stupid do you think we are?”

Jenny Mcarthy on HBOT

6 May

Given the recent death of a woman and serious injury of a child in a hyperbaric chamber. It is perhaps worth highlighting Jenny McCarthy’s recent “tweet”.

Im inside a hyperbaric chamber. This thing makes me feel amazing.

If a vaccine “exploded” killing one person and critically injuring another with such clear causality, one can imagine McCarthy would be the first to stand up and denounce it. Instead, as one commentator says it’s “All risk, no benefit” when it comes to the quackery surrounding autism, and that’s before you risk dreadful gluten-free and casein-free cup cakes. Meanwhile, despite having no evidence, McCarthy suggests vaccines are dangerous toxic products and may be responsible for the start of an explosion of preventable childhood diseases.

Are the Minnesota Somalis political pawns?

5 May

Let me start out by saying I hope a good answer is found for the high number of Somali children getting special education services in MN under the autism label. The only way to do that properly will take time, money and cooperation from the Somali community.

That said, I will admit that I have avoided this subject up until now. It was very obvious to me that without accurate numbers, this is likely going to just be a game of politics. And, let’s face it, educational numbers are not an accurate way to measure autism. The fact that David Kirby chimed in very early didn’t help either. If I’ve learned anything reading blogs, it is that Mr. Kirby is quite willing to misuse data.

As background, there are more young Somali kids in the Minneapolis schools getting services in autism preschools. Groups such as Generation Rescue have been using this to support the idea that vaccines cause autism. Others have been claiming that vitamin D deficiency is to blame.

It is worth noting that the fraction of Somalis in the autism preschools is about 1%. While this is high compared to the non-Somali’s in preschool, it is about the same fraction for older children in the Minneapolis schools.

As I said, I was planning on leaving this subject alone. That is until I read the Simons Foundation blog on the topic, reporting on this report. The SFARI blog (as it is known) uses precise language to describe the situation (something that would be good for us all to learn).

Public health clusters are usually suspect, but in a report released last week, the Minnesota Health Department and the Centers for Disease Control and Prevention confirmed that, among 3- and 4-year-old children, those of Somali origin are two to seven times more likely to be placed in preschool programs for autism.

That’s right. They didn’t find that more Somali kids have autism, they found that they were placed in autism programs. You don’t need a medical diagnosis to be placed in an autism school program.

But that wasn’t what got me to write this post. What prompted me to blog was the next sentence:

The report also found other ethnic trends in these classes: just two Asians and one Native American between 2005 and 2007.

Wow. There were even years with zero Asians in those classes. If one is to take the data from the Minneapolis schools as indicating that Somalis have more autism, one has to then explain why Asians and Native Americans have almost no autism!

Why does this bug me? Because it exposed the exact sort of hypocrisy that typifies the efforts of Generation Rescue, Dan Olmsted, Mark Blaxill, and David Kirby (to name a few): “Look until you find something that supports your preconceived notion, then stop!!!!” They have to stop before they find something that would be difficult to explain–like the low prevalence amongst Asians and Native Americans.

Generation Rescue’s motto is “Autism is preventable and reversible”. If so, why aren’t they looking into the low administrative prevalence amongst Asians and Native Americans in Minneapolis.

Jenny McCarthy has often complained that no one wants to study her son to see why he was cured of autism (which begs the question: why hasn’t the alternative medical community studied him?). Why isn’t Jenny McCarthy and her partner Jim Carrey in Minneapolis calling for a study of the Asians and Native Americans in Minneapolis?

I could keep going on and on, but you get the point. Generation Rescue cherry picks the data that supports their notion of vaccines causing autism. They ignore the inconvenient information. One group, the Somalis, are used as political pawns because they help GR with the idea that vaccines cause autism. As to the idea that autism is “preventable and reversible”? I guess if GR really cared they would be looking at the Asians and Native Americans in Minneapolis.

Fire, Fatal Injury, and Claims of Certification in an Independent HBOT Clinic

4 May

By now, most readers of LB/RB have learned about the critical injury of an Italian 4 year-old (Francesco Martinizi), and the death of his grandmother, which occurred as the result of an apparent flash fire/explosion at a hyperbaric oxygen therapy center in Florida.

Media Story

Apparently, the boy was likely being treated for Cerebral Palsy.

Media Story

Cerebral Palsy is not an Undersea and Hyperbaric Medical Society (UHMS)-approved indication for the use of hyperbaric oxygen therapy, and this was recently commented on by Dr. Charles S. Graffeo in an article in the New York Times online by Jane E. Brody.

He cautioned patients to steer clear of independent hyperbaric centers owned by a single doctor or small medical group that is not affiliated with a major hospital or medical school. Commenting on claims commonly made by such clinics, he said: “No legitimate organization would condone treating cerebral palsy with hyperbaric oxygen therapy. I haven’t seen anything that is even potentially promising to support such a use. If I had a C.P. child, I wouldn’t even consider it.”

Given these recent comments in the New York Times article, I wanted to learn a little more about this Florida hyperbaric oxygen therapy clinic – Ocean Hyperbaric Neurologic Center (OHNC). It’s a clinic that apparently may also use HBOT to treat autism. The clinic appears to be exactly what Dr. Graffeo cautioned about. It seems to be an independent, privately-owned hyperbaric center, and according to the clinic’s website, appears to have a single MD on the board and staff.

The medical director listed at the OHNC’s website is George F. Daviglus.

Dr. Daviglus is a licensed medical doctor in the state of Florida, and apparently, as allowed for by Florida law, may not carry medical malpractice insurance.

Additional information from the OHNC’s website tells us the following about Dr. Daviglius:

Dr Daviglus performed duties as co-director of Ocean Hyperbaric Neurologic Center since 1998 and is now proud director of the clinic. He is certified in Hyperbaric Medicine by the Undersea and Hyperbaric Medical Society and is Diplomate of the American Board of Surgery, Thoracic & Cardiovascular. Additionally, Dr Daviglus holds teaching and attending medical positions at numerous medical institutions including Thoracic & Cardiovascular Surgery at VA Hospital, Jackson Memorial Hospital and University of Miami School of Medicine.

While seemingly innocuous (and likely reassuring to potential patients), it’s probably somewhat misleading because it’s stated that Dr. Daviglus is “certified” in Hyperbaric Medicine “by the Undersea and Hyperbaric Medical Society”. The UHMS is apparently not an organization that “certifies” the medical expertise of physicians in hyperbaric oxygen therapy like a medical specialty board at all. From the UHMS website page that elaborates on physician certification:

Physician Certification

Physicians can obtain board certification in Undersea and Hyperbaric Medicine through the American Board of Emergency Medicine (ABEM) and the American Board of Preventive Medicine (ABPM), with a current certification from one of the 24 primary member boards of the American Board of Medical Specialties (ABMS). Physicians must submit an application to the board through which they are certified. Physicians certified by an ABMS member board other than ABEM and ABPM and who fulfill the eligibility criteria must apply to ABPM. Upon successful completion of the examination, certification is awarded by the board through which the physician submitted the application.

So it appears that “certification” in Undersea and Hyperbaric Medicine is actually the responsibility of ABEM and ABPM, not the UHMS. Both the ABEM and the ABPM are member boards of the American Board of Medical Specialties. If a physician is certified by either the ABEM or the ABPM (or any other ABMS member boards), a search at the ABMS website should reveal this. A search for physicians with the last name “Daviglus” turns up the following:

George F. Daviglus

American Board of Surgery
Surgery – General (General indicates Primary Certificate)

American Board of Thoracic Surgery
Thoracic Surgery – General (General indicates Primary Certificate)

There was nothing returned for ABEM or ABPM, nothing about Undersea and Hyperbaric Medicine, and Dr. Daviglus does not appear on UHMS-maintained lists of physicians certified by ABEM and ABPM.

The UHMS does provide accredidation for hyperbaric facilities themselves – The Ocean Hyperbaric Neurologic Center is not listed by the UHMS as a UHMS-accredited facility.

Additionally, the UHMS appears to have some potential affiliation with the National Board of Diving and Hyperbaric Medical Technology (NBDHMT), the board that certifies hyperbaric technicians, diving medical technicians, and hyperbaric registered nurses.

While the two technicians listed on the Ocean Hyperbaric Neurologic Center’s staff page do appear certified as stated, a search for “Daviglus” turns up zero results at the NBDHMT website for CHT, DMT, or CHRN.

It should also be noted that the UHMS does certify “Diving Medical Examiners”. Physicians receiving this education and certification provide medical assessments of “fitness for diving”. Dr. Daviglus does not appear on the list of UHMS-certified Diving Medical Examiners.

It seems possible at this point, that the Ocean Hyperbaric Neurological Center webpage about the staff may not reflect what some would expect with such a claim of certification.

Although unconfirmed, it may be that the director of the clinic possesses a certificate (or certificates) of completion from UHMS-approved Hyperbaric Medicine CME coursework for physcians. Such courses do have the objective of providing education on the subject and often include the word “certification” in the course title. While not exactly “certification in Hyperbaric Medicine by the Undersea and Hyperbaric Medical Society”, according to one of the providers of this type of education, an introduction to hyperbaric medicine course “provides the credentials recommended for Physician Hyperbaric Supervision”.

If this is the extent of the “certification” held by Dr. Daviglus in hyperbaric medicine, the clinic’s website might better serve those seeking to clearly understand the staff’s relevant training and “certifications” by adding some clarification. Then again, if something along the lines of completion of one or two weeks worth of CME coursework in hyperbaric medicine represents the extent of the “certification” in hyperbaric medicine held by the director of this clinic, this may contribute to an explanation of why this facility appears to treat conditions like cerebral palsy and autism in the first place – conditions for which there appears to be very little legitimate scientific support behind the use of hyperbaric oxygen therapy (some have even called the use of hyperbaric oxygen therapy for such conditions, “quackery”).

Yes, this accident (fire/explosion) is tragic, very tragic. If Francesco indeed survives the injuries he’s apparently sustained, the next couple of months are likely to be very very rough. The situation certainly isn’t helped by the fact that there probably isn’t much in the way of good scientific evidence to support the notion that little 4 year-old Francesco should have ever been in such a facility in the first place.

Author Note: “Do’C” is a nickname, short for Dad Of Cameron. Do’C is not a physician or licensed healthcare provider of any kind. Along with occassional guests, Do’C writes the Autism Street blog.

Mark and David Geier promise its true

4 May

The South Jersey Courier Post carries a story today concerning the father and son team of Mark and David Geier.

They have presented at the branch meeting of the U.S. Autism & Asperger Association concerning their own branch of autism related woo – treatment with Lupron. A process that has led them to stretch the truth beyond breaking point numerous times, claiming false affiliations and using friends and family as members of review bodies in order to pass ethical regulations. In a wider world of autism related woo, this is a particularly sordid story.

The Geiers say excess testosterone increases the toxicity of mercury, which they claim is the primary cause of autism, and that the suppression of testosterone production improves the ability to remove the poisonous mercury — a method often referred to as chelation therapy.

The drug Lupron, or leuprolide acetate, lowers testosterone in autistic children, which then frees up the toxic mercury, the Geiers say. The Geiers, who operate eight offices nationwide under the name “Genetic Consultants,” found that testosterone blocks the body’s ability to make glutathione and that mercury binds to glutathione.

So, the Geier’s are still clinging grimly to the mercury = autism belief. A belief for which there is no sound science whatsoever and so much against it would take too long to discuss in one blog entry.

And they are also claiming that they have ‘found that testosterone blocks the body’s ability to make glutathione’. Searching PubMed for ‘lupron glutathione’ returns no hits at all. So where have they found this? Under the stairs? Why aren’t they publishing this science if they’re so sure?

Lupron lowers testosterone and…

To prove there is a hormonal connection to autistic children, the Geiers displayed several studies that showed a major side effect of high testosterone in children is precocious (or premature) puberty. The Geiers said they found signs of premature puberty, such as facial hair, body odor and early sexual development, in 80 percent of the autistic children in their clinic.

Weird stats. When I searched PubMed for ‘precocious puberty autism’ I got one result back:

This is a presentation and discussion of clinical and laboratory data obtained on 13 girls with Rett syndrome…..Precocious puberty and respiratory alkalosis were not found in our patients

Huh. Fancy that. Not found. And here the Geier’s are claiming an 80% correlation rate between autism and precocious puberty. Maybe that results from the test they’re using.

The Geiers said they found signs of premature puberty, such as facial hair, body odor and early sexual development…

And yet they somehow failed to perform the very simple and definitive test for precocious puberty – an xray of the wrist. If bone age is one year older than their chronological age then they have precocious puberty. Simple. And not done by the Geier’s. You have to wonder why.

And here we have more hidden science.

Mark Geier said laboratory tests at his clinic show that after just three months on Lupron, autistic children improved in dozens of cognitive and behavioral ways.

Next time someone tells you that ‘big pharma’ are using unindependant research, tell them this: science published in a mainstream journal has its methods and results clearly published so that other scientists can attempt to replicate them. That’s about as independent as you can get. Here we have the Geier’s simply saying these kids improved. No methods, no results, no science is shown. We’re just expected to take their word for it. That’s about as unindependent as you can get. Anyone would think the Geier’s have a vested interest in Lupron doing well.

HBOT quackery maims 4 year old

2 May

So it turns out that four year old Francesco Pio Martinisi had Cerebral Palsy.

HBOT is not a valid treatment for CP and there is no quality science to support the idea that it may be one day.

There is growing interest in the use of hyperbaric oxygen therapy (HBO2) for children with cerebral palsy. Although there is no rigorous evidence to support this management, private hyperbaric centers have been established throughout the United States and Canada….

They are Italian and in an echo of Tariq Nadama, came to the US for a treatment not offered in their home country. CBS4 states they have spent ‘hundreds of thousands’ of dollars on HBOT ‘treatment’.

Nobody knows why the fire started but one thing is sure. There was no medically indicated reason for Francesco to be in that chamber. This was another totally unnecessary accident.

Generation Rescue: an autism research organization?

1 May

Generation Rescue has been trying to rebrand itself as a “research” based organization over the past year. This is a tough sell given their track record of promiting junk as science. Even if they didn’t keep touting their phone survey it would be difficult to forget it. Rather than write the effort off as bad, they cherry picked the “results” which support their political and public relations agenda.

I was reminded of this while I was writing a review of the Science Advisory Board for the newly minted Autism Science Foundation. Why not do the same for Generation Rescue?

it is worth noting that it would have been impossible to review GR’s science advisory board a year ago. It didn’t exist from what I recall. I recall checking fairly recently, and the advisory board consisted of one person.

But, that was the past. GR is ramping up their Advisory Board. Below is the current Advisory Board for GR. I use the ISI Web of Knowledge database to check for papers with the Science Adviser as “author” and the topic as “autism”, just as I did for the Autism Science Foundation. I also did a few other checks, as you will see.

S. Jill James

I get 11 autism papers for Dr. James papers in the search. One of which was cited 84 times (which is very respectable), but most of which have been cited 1 or 0 times.

I found something interesting on her website. Under “Research Support” she lists, “CDC: Mechanisms of Oxidative Stress in Children.”

I find it amusing that the top science adviser to Generation Rescue is accepting funding from the CDC. Were she on the “other side” of the fence on the vaccine question, GR would certainly have claimed that accepting money from the CDC is a clear indication of bias and would call for “independent” research.

I guess you can be independent and still accept money from the CDC.

Dr. Richard Deth

Dr. Deth was recently discussed by Kev, by the way. He has two autism papers in the ISI database. One of which was cited 31 times.

Woody R. McGinnis, M.D.

I only get 3 papers from the ISI Web of Knowledge database for McGinnis WR and topic=autism. Apparently they aren’t listing his papers in the Journal of Biochemistry and Biotechnology which came out last year.

Jerry Kartzinel, M.D.

I get no hits for an ISI search on papers for Kartzinel as author and subject=autism. He is, of course, the co-author with Jenny McCarthy on her recent book. Not exactly research, though.

This is not a group of heavy hitters in autism research. As noted, Dr. James has a few papers which have been cited a number of times. But, given the nature of this group (and of Generation Rescue) the question has to be asked–is this a real advisory board or is it for show? In general, this is a pretty lightweight group in the autism world. When Jill James is your “heavy hitter” you aren’t going to impress many people who actively watch autism research.

Besides, when has GR ever really acted like they want “scientific advice”? Seriously–they seem to be an organization which thinks scientists exist to confirm the observations of parents.

Compare this Science Advisory Board to that of the Autism Science Foundation, which we recently discussed. GR, an organization that has been around for years, is just putting together their Advisory Board and, well, the effort is slow to get moving. ASF had a reasonable Advisory Board at their launch.

But, Generation Rescue isn’t an organization to let their glass house stop them from throwing stones. You can imagine that when an organization like the Autism Science Foundation comes out with a stance against the vaccine/autism hypothesis it would see some “heat”. True to form, but I admit later than I expected, Kim Stagliano put forth a mild attack. As attacks go, it’s actually sort of amusing. Ms. Stagliano uses as her theme an idea that the ASF is stuck in the past in their approach to research. I find this attack by Ms. Stagliano amusing given Generation Rescue’s approach to research. GR’s concepts of research are like a neaderthal man found in a glacier: they represent ideas frozen in time, and ideas whose evolutionary path led to nowhere. You know the ideas: MMR and thimerosal caused an autism epidemic.

I am left wondering why Generation Rescue doesn’t have Dr. Andrew Wakefield as a science adviser. Certainly if anyone typifies the antiquated stance on science that Generation Rescue holds, it is Andrew Wakefield. GR certainly shows great admiration for the man who fueled the MMR/autism scare in 1998. But, it is one thing to admire the man, it is another thing to add someone to your advisory board whose research is considered an embarrassment by the vast majority of the research community. Who knows, Perhaps Dr. Wakefield turned GR down?

If I may take another minute on Ms. Stagliano’s blog post. She calls in the spectre of the Tobacco companies. It seems to be a favorite contrivance for her and the entire Generation Rescue/Age of Autism crowd. Favorite and patently ridiculous. Here’s what she had to say.

If the American Lung Association had spun off a new group headed up by those with a strong allegiance to Philip Morris and called themselves, INCS (“It’s Not Cigs Stupid!”) would anyone take them seriously outside of those with a financial interest in cigarettes?

The tobacco gambit is a bad comparison to autism from the outset. Epidemiology showed clearly that tobacco causes cancer. The epidemiology on MMR and thimerosal has shown they didn’t cause an “epidemic” of autism.

What takes the tobacco gambit from bad to ridiculous is when, only a few paragraphs later, Ms. Stagilano cites Bernadine Healy. Dr. Healy accepted tobacco company money as part of an organization which denied the dangers of second hand tobacco smoke. One sure sign that Ms. Stagliano’s post is basically propaganda–she refers to Bernadine Healy as “one of the most trusted doctors in America”. Er. Yeah. I would love to poll the “man on the street” and see how many have even heard of Bernadine Healy. Plus, I guess someone can be accept tobacco company money and still be “trusted”? Wll, at least as long as they support the “vaccines might cause autism” concept, eh Ms. Stagliano?

I actually wish Generation Rescue well with their effort to build a Science Advisory Board. I would hope that they would (a) find real scientists and (b) take their advice.

It would be a new direction for Generation Rescue.

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