Archive | February, 2010

The Document SafeMinds Doesn’t Want You to Read

17 Feb

When someone asks about the Dr. Wakefield, or the GMC hearing, do you talk about the ruling or point people to read it for themselves? Well, according to Mark Blaxill (blogger for SafeMinds), you shouldn’t. In an “opposing view” from USA Today, he stated:

Anyone convinced that Wakefield is the problem should ask a simple question: Can you name a single instance of fraud or misconduct by Wakefield, describe it simply without deferring to the authority of some faceless tribunal and defend the evidence to an informed skeptic?

Just for the record, I am not convinced that Wakefield is *the* problem. There are lots of problems.

That said, I find the fact that Dr. Wakefield didn’t divulge his funding from the Legal Aid Board when directly asked by a U.S. Legislator to be misconduct. (From the congressional record, April 6, 2000)

Mr. Burton. Who funded your study, Dr. Wakefield?
Dr. Wakefield. We did. We have a small charitable contribution, but—
Mr. Burton. A charitable organization did; I see.
Dr. Wakefield. We found it a little difficult to get funding—-

I consider Dr. Wakefield not divulging his patent, which includes a claim for an alternate measles vaccine, during his news conference following the publication of the article in The Lancet to be misconduct.

I did those without even having to lean on all the information at BrianDeer.com, or Mr. Deer’s news articles.

I could have quoted many instances of Dr. Wakefield’s research which were mentioned in the Autism Omnibus Proceedings. A prime example would be Dr. Wakefield publishing claims that measles virus were detected in the guts of autistic kids, even after being told that his detection of measles virus in tissue samples were incorrect by Nicholas Chadwick. But, that wasn’t part of the GMC inquiry.

Mr. Blaxill made these comments in an “Opposing View” statement at USA Today. His opposing view was to the op-ed piece:

Our view on fighting disease: Vaccine fear-mongering endangers child health
When ‘herd immunity’ declines, deadly illnesses make a comeback.

Here is an amazing quote by Mr. Blaxill:

Dedicated scientists who simply reported a series of cases combining bowel symptoms, autistic regression and exposure to the MMR vaccine (measles, mumps and rubella) stand accused of fraud and misconduct

Simply reporting? I guess if you throw out all the evidence, as Mr. Blaxill would have you do.

Simply reported? That downplays what happened. It makes it sound like they just found the data lying around and put it into a paper. Does performing lumbar punctures (spinal taps) to take cerebral spinal fluid from disabled children–without any clinical need–fall under the category of “simply reporting”? You can even take out the “without any clinical need” if you want to follow Mr. Blaxill’s call to ignore the GMC ruling.

“Simply reporting”…it sounds like they just looked at a bunch of kids’ records. If some major pharmaceutical house were taking samples from children using very invasive procedures, there would be no question of “simply reporting”.

As long as I am on the subject, Dr. Wakefield and his two colleagues are not “accused” of fraud and misconduct anymore. Most of the charges were “found proved”. Once again, a choice of words made to downplay the situation.

By the way, it is worth comparing Mr. Blaxill’s statement with that of Dr. Wakefield himself:

…I invite anyone to examine the contents of these proceedings and come to their own conclusion

I did. I have.

A Nasty Little Franchise

15 Feb

Wakefield may have the highest public profile but he is just one of many who seek to profit from autism and he is by no means the worst. Remember the Geiers? This father and son team from Silver Springs in Maryland have an unsavoury record that makes Wakefield seem almost reasonable.

Wakefield breached the terms of his hospital’s ethics committee. The Geiers, operating out of the family home, invented their own IRB and granted themselves ethical approval for experiments on children with a powerful drug called Lupron. Lupron is used to treat precocious puberty, a rare condition in young children. It is also used is also used to treat prostate cancer in men, to treat endometriosis in women, and to chemically castrate sex offenders. The Geiers use it on autistic children and young adults.

Kathleen Seidel has catalogued their bad science, plagiarism, inflated academic resumes, the fraudulent IRB, cruel and unnecessary blood draws, attempted deals with TAP pharmaceuticals and the Lupron Protocol itself on her Neurodiversity website. Trine Tsouderos at the Chicago Tribune covers all the basics in her recent profile of the Geiers,  ‘Miracle drug’ called junk science.

The most disturbing part of Tsouderos’ story was the news that the Geiers were rolling out a franchise for others to cash in on their unproven and dangerous protocol. According to their website they offer the following

  • Genetic Markers (DNA Fragile X Syndrome, Blood Chromosome, Chromosome Microarrays, DNA Rett Syndrome, Angelman/Prader Willi Syndrome)
  • Mitochondrial Dysfunction (Carnitine, Lactic Acid, Ammonia, Hand Muscle Testing)
  • Hormone Imbalances (Total Testosterone, Free Testosterone, DHEA, DHEA-S, Androstenedione, Dihydrotestosterone, Total Estrogens, Estrone, Estradiol, ACTH, Aldosterone, Prolactin, FSH, LH)
  • Oxidative Stress/Inflammation (Neopterin, Lipid Peroxides)
  • Detoxification Pathways (Glutathione, Cystathionine, Homocysteine, Methionine)
  • Immune System Function (Immune Deficiency Profile, HLA-Testing, Immune Complexes, Food Allergies, Celiac’s Disease)
  • Heavy Metals (Porphyrins, Blood Metals, Urinary Metals)
  • Neurological Dysfunction (Brain MRI scans, Brain SPECT scans)
  • General Health Status (Comphrensive Metabolic Panel)

And this is the team that will deliver these services.

  • Maryland: Mark Geier MD, geneticist and David Young MD, Obstetrician and gynaecologist.
  • Springfield, llinois: Mary Young MD, psychiatrist and neurologist.
  • Ft. Lauderdale, Florida: David Claymore, neuroradiologist.
  • Parsippany, New Jersey: Paul King, industrial chemist.
  • Indianapolis, Indiana: Melissa Troutman, radiologic technologist.
  • Dallas, Texas: Janet Kern, RN, neuroscientist.
  • Louisville, Kentucky: Janet Pope, RN

And that is it. The only member of the American Academy of Pediatrics is Mary Young who has worked as a child psychiatrist. There are no board certified endocrinologists or anybody with the board certification to diagnose and treat precocious puberty in children.

And what of David Geier BA? He remains vice-president of the non-profit 501(c)3 Institute of Chronic Illnesses, Inc. and the non-profit 501(c)3 CoMeD, Inc. Much of the profit from the franchise will be directed to “these corporations dedicated to
autism research and advocacy efforts.” sure. So families or their insurers will be paying for treatments for their children that have been condemned by real autism experts as junk science. And the profits from this enterprise will be used to fund more junk science. Do they have a GMC in America? Do they want to borrow ours?

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Dismay at Aspie ‘hate’

15 Feb

I read Bev’s latest blog entry bemused and increasingly dismayed. I thought (hoped) maybe she was wrong and had grasped the wrong end of the stick but not only is that unlikely coming from Bev it was wrong. She was spot on. There really were, I realised to my dawning amazement, people with an Aspergers diagnosis who were upset at the possibility of the DSM (V) placing them inside an overall category of ‘autism’. And not for any particularly legitimate reason but mostly because they didn’t want to be associated with the people who I’ve heard them describe as ‘low functioning’.

The comments I read under the story featuring Michael John Carely of GRASP for example pointed towards an internal selfishness bordering on disgust for those who _already_ share their place on the spectrum.

A stunningly nasty comment on this blog illustrates the issue even more handily:

Medical science used to have morons, idiots and imbeciles to describe people with defective brains, but those words became pejoratives, and mentally retarded was substituted. Then mentally retarded became a pejorative, and that got switched to developmentally disabled. Many parents with children born with defective brains glommed onto “autistic” because it had more cachét than retarded or fetal alcohol syndrome or brain damaged, perverting the word autistic and turning it into a new synonym for retarded.

So I don’t want to be called “autistic”. I prefer the distinction Asperger’s brings me; that I am endowed with a different brain, not suffering from a defective brain.

The only positive thing you can say about this commenter is at least they are being totally honest. I’ve read an uncomfortable amount of comments from aspies over the last few days that skirt around the exact same feeling but just don’t come out and say it quite so blatantly.

I know for a fact that not all aspies feel like this but I think those that don’t need to follow Bev’s example and come out and say so. Loudly and clearly. I don’t believe that aspies who want to disassociate themselves from their autistic comrades deserve any part in a movement like neurodiversity. I hope, I believe, that the aspies I count amongst my friends and colleagues feel that way too.

Update
Ari pointed me towards some comforting support from ASAN on the issue:

http://www.newscientist.com/article/dn18508-psychiatrys-draft-new-bible-goes-online.html?full=true
http://blogs.edweek.org/edweek/speced/

Update No.2
More blog reactions. If anyone knows of more please leave the address in the comments and I’ll add them to what I hope will be an ever growing list.

Clay – http://cometscorner-clay.blogspot.com/2010/02/true-neurodiversity-welcomes-dsm-v.html

Samantha – http://unclesamscabin.blogspot.com/2010/02/resisting-taint-of-autism.html

Andrew Wakefield – I have no need of continued registration

14 Feb

In a remarkable and somewhat odd statement put out by Andrew Wakefield, he states:

I have no need of continued registration with the GMC…

Which is somewhat contrary to his statement of 2004 that;

It has been proposed that my role in this matter should be investigated by the GMC. I not only welcome this, I insist on it…

Why would someone insist upon being heard by an organisation he holds so little respect for he longer wants to be a member?

During the rest of the statement, he provides thanks to the support of his economic fan base – the parents, imcluding no doubt the parents of the children whom counr amongst the 11 counts of sticking tubes and needles into developmentally-challenged children without ethical approval, and nine counts of doing so contrary to the children’s wellbeing.

In a private email Brian Deer stated his opinion – which I share – that:

There can’t by any doubt that with four charges of dishonesty, including research and financial misconduct, that he knows he will be erased from the medical register.

Just _one_ of these substantiated charges would be enough to get a GP struck off. With the amount Andrew Wakefield has against his name it would be a small miracle if this didn’t happen and he is pre-emptively striking back at the GMC, declaring he doesn’t care if they do strip him of his right to be referred to as ‘doctor’.

I’ll leave the last words to Brian Deer, the man who single handedly brought down Andrew Wakefield:

His latest statement illustrates a more sinister aspect of Andrew Wakefield’s conduct: the mismatch between what has occurred outside the hearing and what has gone on inside. Outside – appealing to his economic base – he claims he is a victim of sinister forces – the drug industry and government and so forth – when he’s not the slightest evidence of this, (and neither have I). He was taken down by an old fashioned journalistic investigation, executed in the public interest.

And yet, inside the hearing, his behaviour was quite different. He called no witnesses whatsoever. While the prosecution called a parent who provided devastating evidence, he didn’t risk putting any of the ringleaders outside the building into the witness chair, where they could be cross-examined over how vulnerable children came to be brought to a hospital with no department or reputation for evaluating developmental disorders, and where doctors seemed all-but-entirely uninterested in the children’s futures. Nor did he put any questions whatsoever to the government’s vaccine chief, despite Wakefield supporters turning up for a much-hyped showdown. Nothing was asked, because Wakefield has nothing.

What the Wakefield project was all about was getting into the small intestines and spines of children without anybody finding out the reason. *And this is where, rightly, that project has brought him.*

Ginger Taylor goes off the deep end

13 Feb

Like Wade Rankin, Ginger Taylor used to be someone that you could have a decent conversation with regarding vaccines and autism. Not any more. Increasingly, since she was caught out smearing the wrong man her blogging has become erratic and, well, odd.

Today reaches a new low point in Ginger’s blogging career. She has drawn a map listing the ‘forces’ ranged up against poor old Andy ‘Dr Dreamy’ Wakefield. ‘Look at the energy flow in this thing…’ she intones heavily as she describes how Rupert Murdoch and the US Arms industry are exerting pressure on Andy.

Ginger Taylor has become Richard Nixon – believing that everyone in the modern world is oout to get her, or in this case, her paranoia proxy Andrew Wakefield.

California’s Invisible Autism Epidemic Continues

13 Feb

Over a year ago, I wrote a post at Autism Street titled,
“California’s Invisible Autism Epidemic“.

At the time, IDEA child count and population data was available through 2007. Admittedly, what follows is a bit of a repeat, but there is updated information included too.

That January 2009 post asked the following question:

It would seem that many an “autism advocate” has warned us of an impending “crisis” that looms for California’s healthcare systems and schools. If autism caseload is increasing, and it represents a real increase in autism itself, then a next logical conclusion is that, ceteris paribus, similar increases will also be seen in the total numbers of children in special education in California’s schools, right?

And suggested an answer:

Wrong – well, maybe wrong.

Another year has passed, and IDEA data for 2008 is beginning to become available. Here’s what the preliminary IDEA data for California kids in elementary, middle, and high schools shows for autism now:

Autism

To borrow a phrase from Bev over at Asperger Square 8, “Don’t Panic!”.

Also, please remember, that like the CDDS client data, the IDEA is not descriptive epidemiology.

The USDE data are not reliable for tracking the prevalence of autism, and they in fact never were meant to fill this need.

Source

What we can actually learn from this, is that the increase in the number of kids receiving special education services who wear an “autism” category label continues to increase.

Of course the, “not so fast” is next.

The Invisible Epidemic

The next graph shows a bigger picture in California. It’s the number of students (age 6-17) receiving special education services, as a percentage of the population (age 6-17) for all disability categories.

All Disabilities

The percentage has been flat, at a little under 9.2%, for 11 straight years. How is this possible? If there have been “epidemic” increases in the autism category, all things being equal, we should have seen this number rise, shouldn’t we? And therein lies one potential answer – all things are probably not equal. It’s true that within the IDEA data for California, the increase in the use of the “Autism” category label is not offset by decreases in the use of the category label “Mental Retardation”. The increase is also not offset by a corresponding decrease in use of the label “Speech or Language Impairment”.

Speech or Language Impairment

A communication disorder such as stuttering, impaired articulation, a language impairment, or a voice impairment that adversely affects a child’s educational performance.

Source

So what else is there? Something big in California?

Autism and SLD's

Specific Learning Disability

A disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, that may manifest itself in an imperfect ability to listen, think, speak, read, write, spell, or to do mathematical calculations, including conditions such as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia. The term does not include learning problems that are primarily the result of visual, hearing, or motor disabilities, of mental retardation, of emotional disturbance, or of environmental, cultural, or economic disadvantage.

Source

I can still see how, in days of lower awareness and recognition of autism among parents and educators, an autistic child could easily be placed in this category (as a kind of catch-all), based on the first portion alone – “A disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written…”. It could even be the case, that alongside less awareness and recognition, there was also some degree of unwillingness to use a category label like “Autism” on the part of both parents and educators.

Interestingly, the apparent in increase of .09% of the resident population categorized under “autism” appears to be offset by a .09% of the resident population decrease for “specific learning disabilities” in 2008.

Source data can be found at http://www.ideadata.org

Wakefield Monkey Study Withdrawn by Editor

12 Feb

In case you missed it, Dr. Wakefield is a co-author on a series of studies vaccinating macaques. They have been touted as “blockbuster” studies, and also critiqued sharply.

With a hat-tip to KWombles for the information: The paper has been withdrawn

If you check the Neurotoxicology website, the paper now has “Withdrawn” added to the tile:

“WITHDRAWN: Delayed acquisition of neonatal reflexes in newborn primates receiving a thimerosal-containing Hepatitis B vaccine: Influence of gestational age and birth weight”

with the statement at the bottom:

This article has been withdrawn at the request of the editor. The Publisher apologizes for any inconvenience this may cause.

The full Elsevier Policy on Article Withdrawal can be found at http://www.elsevier.com/locate/withdrawalpolicy.

Note to users: Withdrawn Articles in Press are proofs of articles which have been peer reviewed and initially accepted, but have since been withdrawn before being published in this journal. Reasons for withdrawal may be due to a decision by the author and/or editor, accidental duplication of an article elsewhere, or because the content contravenes the Elsevier publishing policy in some way. Withdrawn Articles in Press are only visible to users when following an external link, e.g., an end user following a PubMed or DOI link. Such Withdrawn Articles in Press are not searchable or otherwise available in ScienceDirect.

If you follow the link for the Elsevier policy on withdrawing papers, you will find these statements:

Article Withdrawal: Only used for Articles in Press which represent early versions of articles and sometimes contain errors, or may have been accidentally submitted twice. Occasionally, but less frequently, the articles may represent infringements of professional ethical codes, such as multiple submission, bogus claims of authorship, plagiarism, fraudulent use of data or the like.

and

Article Withdrawal

Articles in Press (articles that have been accepted for publication but which have not been formally published and will not yet have the complete volume/issue/page information) that include errors, or are discovered to be accidental duplicates of other published article(s), or are determined to violate our journal publishing ethics guidelines in the view of the editors, may be “Withdrawn” from ScienceDirect. Withdrawn means that the article content (HTML and PDF) is removed and replaced with a HTML page and PDF simply stating that the article has been withdrawn according to the Elsevier Policy on Article in Press Withdrawal with a link to the current policy document.

Google Buzz – follow Left Brain Right Brain

12 Feb

If you’re a Google Buzz user you can now follow LBRB on our own dedicated Buzz account. Search for lbrainrbrain@googlemail.com and start following at your leisure 🙂

This accompanies our Twitter and Facebook accounts which you can use to follow us too.

Autism Science Foundation offering places at IMFAR 2010

11 Feb

Funds will enable parents and other stakeholders to attend the leading autism research conference and share what they’ve learned with the broader autism community.

The Autism Science Foundation today announced that is offering a limited number of grants to parents of children with autism and other stakeholders to support attendance at the International Meeting for Autism Research (IMFAR), to be held in Philadelphia, May 20-22, 2010. Awards of up to $1000 can be used to cover registration, travel, accommodations, meals and other directly related expenses, including childcare.

After the conference, grant recipients will be expected to share what they’ve learned with families in their local communities and/or online.

IMFAR is an annual scientific meeting, convened each spring, to promote, exchange and disseminate the latest scientific findings in autism research and to stimulate research progress in understanding the nature, causes, and treatments for autism spectrum disorders. IMFAR is the annual meeting of the International Society for Autism Research (INSAR).

“We are thrilled to be able to give back directly to the autism community in a research-focused way,” said Alison Singer, president of the Autism Science Foundation. “The award recipients will bring critical new research information to their communities, increasing the speed with which the latest data are shared with the broader autism community.”

“These scholarships are a wonderful opportunity to bring more stakeholders to the IMFAR and improve dissemination of the latest research findings presented at the conference,” said Dr. David Amaral, president of INSAR and director of research at the University of California at Davis M.I.N.D. Institute.

To apply, send a letter to grantsATautismsciencefoundationDOTorg describing why you want to attend IMFAR and, most importantly, explaining how you would share what you learn there with the broader autism community. Letters should be sent as Microsoft Word attachments of no more than 2 pages, 12-point type, “Arial” font, with standard margins. In the subject line please write: IMFAR Grant. Letters must be received by March 15, 2010. Recipients will be announced in April.

Anthony Cox published in PJ Online

11 Feb

Our very own Anthony Cox was published today in PJ Online (gateway to the world of pharmacy and medicines) concerning the MMR saga. I’ll copy and paste a key paragraph then urge you to go read the whole piece which is an excellent summation of events thus far.

In US court testimony in 2007, Chadwick stated that he had tested all the samples from Wakefield’s ASD children and found no MVV present. Wakefield was made aware of this before the publication of the 1998 paper, but saw fit not to draw attention to this negative finding that undermined his hypothesis.

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