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Trine Tsouderos and Patricia Callahan honored by the Association of Health Care Journalists for autism series

23 Mar

The Chicago Tribune has run a series of articles lately on alternative medicine and autism. The stories include OSR#1: Industrial chemical or autism treatment? (about a chelation chemical invented for mining operations, now labeled as a supplement and sold for “oxidative stress relief”), the self explanatory titled Autism treatment: Science hijacked to support alternative therapies, Autism’s risky experiments Some doctors claim they can successfully treat children, but the alternative therapies lack scientific proof and Autism treatment: Success stories more persuasive to some than hard data One dad, a doctor, says he was “fooled”

This is part of a series that won the Chicago Tribune one of two awards. Writers Patricia Callahan and Trine Tsuderos were honored.

“This powerful series combines first rate medical writing and rigorous investigative reporting to expose doctors who perform what the authors rightly call “uncontrolled experiments on vulnerable children” with autism,” commented the judges. “Writing with the authority that comes from total command of the material, Tsouderos and Callahan bring new clarity to a notoriously murky subject-autism treatments. They document a horrifying brand of bad science perpetrated by bad doctors on desperate families, but they do it without a hint of hyperbole or sensationalism. Their straightforward, professional tone lets the facts tell the story. The result is an important-and devastating-piece.”

With a tip of the hat to Autism News Beat for his story, Tribune investigation takes first place

addendum:

here is the text of the announcement about the Tribune team:

Chicago Tribune reporters examine Lupron – a testosterone inhibitor used to treat precocious puberty and to chemically castrate sex offenders – and its reputed ability to be a “miracle medicine” for a disease with few mainstream medical answers: autism. In looking into Lupron, the Tribune found a world of alternative treatments for autism with fervent supporters who made big claims they said were backed by science. But when reporters evaluated the treatments, painstakingly analyzing each claim, each paper, each therapy through a lengthy dialogue with scores of medical experts, parents and doctors, they found the therapies were risky and unproven and the science backing them was junk. The Tribune provided readers and parents with hard evidence and some difficult truths, concluding that thousands of children with autism are being subjected to mass uncontrolled experimentation every day.

Judges comments: This powerful series combines first rate medical writing and rigorous investigative reporting to expose doctors who perform what the authors rightly call “uncontrolled experiments on vulnerable children” with autism. Writing with the authority that comes from total command of the material, Tsouderos and Callahan bring new clarity to a notoriously murky subject-autism treatments. They document a horrifying brand of bad science perpetrated by bad doctors on desperate families, but they do it without a hint of hyperbole or sensationalism. Their straightforward, professional tone lets the facts tell the story. The result is an important-and devastating-piece.

For their piece Dubious Medicine

Does The NIH Want To Study Jenny McCarthy’s Son?

22 Mar

Why would the National Institutes Of Health want to study Jenny McCarthy’s son?

Similarly, there are a large number of anecdotal reports of children with autism who, following intensive biomedical intervention (e.g., gluten/casein free diets, vitamin supplements, chelation), are indistinguishable from their typically developing peers.

Jenny McCarthy seems to have pretty much claimed she cured her son’s autism.

Yeah, I know, she’s apparently claimed a lot of stupid things though:

You know, I could in two months turn Evan completely autistic again. I could do it completely through diet. And maybe getting some vaccine boosters.

I really can’t keep up with Jenny McCarthy’s anti-vaccination and autism nonsense.

If you’re one of those types who’s attracted to McCarthy’s silliness like many are to a car accident, but are smart enough to just keep driving and later try to catch a thumbnail report of what much of the nonsense seems to be about, I recommend reading Kev’s recent piece in response to an article of hers in the Huffington Post.

An Open Letter To Jenny McCarthy

In that Huffington Post article, she wrote the following:

Parents of recovered children, and I’ve met hundreds, all share the same experience of doubters and deniers telling us our child must have never even had autism or that the recovery was simply nature’s course. We all know better, and frankly we’re too busy helping other parents to really care.

Uh huh.

And remember when Jenny McCarthy wrote this a couple of years ago at a CNN blog?

Evan is now 5 years old and what might surprise a lot of you is that we’ve never been contacted by a single member of the CDC, the American Academy of Pediatrics, or any other health authority to evaluate and understand how Evan recovered from autism. When Evan meets doctors and neurologists, to this day they tell us he was misdiagnosed — that he never had autism to begin with. It’s as if they are wired to believe that children can’t recover from autism.

So where’s the cavalry? Where are all the doctors beating down our door to take a closer look at Evan? We think we know why they haven’t arrived. Most of the parents we’ve met who have recovered their child from autism as we did (and we have met many) blame vaccines for their child’s autism.

Source (and emphasis mine)

Autism research was being funded and conducted by U.S. “health authorities” long before Jenny McCarthy entered and re-entered the public eye (rebranded from IndigoMoms.com to Generation Rescue back sometime between 2006 and 2008), of course. But I suppose it’s quite possible they weren’t interested in stories like Jenny’s. That’s apparently a thing of the past (and so should be McCarthy’s claim that they aren’t interested).

While it might not meet McCarthy’s apparent expectation of a personal contact, indeed the NIH is interested in the subject.

Identification of Characteristics Associated With Symptom Remission in Autism

Additional detail here.

This study has apparently been listed since June, and it’s still recruiting!

LBRB blogger, Sullivan, noted this not too long ago:

NIH to study recovered autistics

He had an interesting observation too:

This is a study that should be done, in my opinion. I will note that this study has supposedly been one of the key pieces being sought by multiple parent groups. I will further note that I have not seen any of them mention this study. Quite the opposite, in fact. I see comments occasionally on blogs about how their frustration that such a study is not being performed. Perhaps I missed it, but I am curious why their leadership doesn’t make a big deal out of this.

To repeat, a component of this study (which is also looking at other possible reasons for remission) is looking for Jenny McCarthy:

Similarly, there are a large number of anecdotal reports of children with autism who, following intensive biomedical intervention (e.g., gluten/casein free diets, vitamin supplements, chelation), are indistinguishable from their typically developing peers.

The Sponsor and Researcher for this study? The NIH.
(Note to Jenny: that’s a “Health Authority: United States: Federal Government”)

They’re looking for Jenny. They want to hear her/Evan’s story (they’ll want substantiating detail too, but that won’t be a problem).

I wonder how many of the “Rescue Angels” or other AoA followers have signed up to participate? Did Jenny McCarthy get the word out to her people? I’m sure she did, right? Like Sullivan, did I miss it too? I could have.

If you don’t think she might have, and if you know Jenny McCarthy (cause lord knows, I don’t), please make sure she gets this info:

Patient Recruitment and Public Liaison Office
Building 61
10 Cloister Court
Bethesda, Maryland 20892-4754
Toll Free: 1-800-411-1222
TTY: 301-594-9774 (local),1-866-411-1010 (toll free)
Fax: 301-480-9793

Electronic Mail:prpl@mail.cc.nih.gov

Shocking news from Danish autism epidemiolgists!

18 Mar

Danish epidemiolgists have looked at criminal behavior in autistics, and the results are nothing short of startling:

In their paper, Pervasive developmental disorders and criminal behaviour: A case control study, authors S.E. Mouridsen, B. Rich, T. Isager, and N.J. Nedergaard, show:

The prevalence and pattern of criminal behaviour in a population of 313 former child psychiatric in-patients with pervasive developmental disorders were studied. The patients were divided into three subgroups and compared with 933 matched controls from the general population. Age at follow-up was between 25 years and 59 years. An account of convictions in the nationwide Danish Register of Criminality was used as a measure of criminal behaviour. Among 113 cases with childhood autism,.9% had been convicted. In atypical autism (n = 86) and Asperger’s syndrome (n = 114) the percentages were 8.1% and 18.4%, respectively. The corresponding rate of convictions in the comparison groups was 18.9%, 14.7%, and 19.6% respectively. Particular attention is given to arson in Asperger’s syndrome (p =.0009). © 2008 Sage Publications.

Yes, autsitics are as much as 20 times less likely to be convicted of crimes as their “typical” counterparts (0.9% compared to 18.9%).

I ran across this abstract and, given the current hype over Danish epidemiologists I couldn’t resist presenting it in this sensational mode. Besides, the title may draw some readers from the contingent bent on portraying child autistics as a looming threat to the well being of society.

Two clinical trials for autism

18 Mar

I am, and will continue to be, highly critical of therapies used to treat autistics (typically children) which are potentially dangerous and which are hyped beyond any actual proof. Since many often misinterpret this to say that I am against any treatment of autistics, I thought I would discuss two clinical trials caught my eye this week, one completed and one starting. These are studies which I am happy to see made.

What separates these from other studies and, worse, the
1) They can give answers to the anecdotal reports that these work
2) The drugs are known, so the safety concerns (including adverse reactions) can be weighed by parents before hand. The side effects are reversible and, for the most part, the side effects are minor.
3) They are being studied under controlled conditions, so results have the potential to give useful information.

Digestive Enzyme Supplementation for Autism Spectrum
Disorders: A Double-Blind Randomized Controlled Trial
by
Sujeeva A. Munasinghe, Carolyn Oliff, Judith Finn, John A. Wray

Just came out in the Journal of Autism and Developmental Disabilities.

The abstract from this paper states:

Abstract To examine the effects of a digestive enzyme supplement in improving expressive language, behaviour and other symptoms in children with Autism Spectrum Disorder. Randomized, double-blind placebo-controlled trial using crossover design over 6 months for 43 children, aged 3–8 years. Outcome measurement tools included monthly Global Behaviour Rating Scales, Additional Rating Scales of other symptoms by parents and therapists, and monthly completion of the Rescorla Language Development Survey. Compared with placebo, treatment with enzyme was not associated with clinically significant improvement in behaviour, food variety, gastrointestinal symptoms, sleep quality, engagement with therapist, or the Language Development Survey Vocabulary or Sentence Complexity Scores. A small statistically significant improvement on enzyme therapy was seen for the food variety scores. No clinically significant effect improvement of autism symptoms with enzyme use was shown with this trial, however, possible effects on improvement in food variety warrants further detailed investigation.

The basis for using digestive enzymes is the so-called “leaky gut” theory, or “opiod excess” theory, whereby the digestive tract is permeable (leaky gut) and chemicals leak into the bloodstream which cause autistic behavior (opiod excess). It is not a theory which I give much weight, but it is commonly accepted and the use of digestive enzymes is not uncommon in the alternative medical autism community.

The authors found, not surprisingly in my opinion, that digestive enzymes were not effective. The sample size was relatively small (43), but the study was a “crossover” type, so that all the children spent some of the study time on the enzyme and some time on placebo.

The second study was announced this week in a press release:

Autism Research Study Announced By Children’s Health Council

Dr. Glen Elliott of Children’s Health Council leads clinical research for local patients

The press release is quoted below:

Autism is an exceptionally complex illness. Autism is a developmental disorder with impairments in social interaction and communication, in addition to restricted, repetitive behaviors. Once considered quite rare, 1 in every 150 children in the United States is now diagnosed with the illness, making it a common developmental disability.

Diagnosis of Autism typically occurs at about 3 years of age. The treatment of the condition is complex, as there is no single known cause or cure. Early childhood is the period during which the symptoms of Autism are clearly observable and children are experiencing rapid developmental changes. Researchers continue to look for more effective behavioral, educational and medical treatments to improve the lives of children with Autism. Therefore, a key to overcoming some of the challenges associated with the condition is early diagnosis and intervention.

A clinical research study is now underway in the Bay Area for children between the ages of 3 and 6 with Autistic Disorder. The goal of the study is to evaluate the safety and effectiveness of an investigational medication for children with this condition.

Dr. Glen Elliott of Children’s Health Council (CHC) is conducting this clinical research study. CHC believes all children deserve the opportunity to reach their full emotional, educational and developmental potential. CHC seeks participants for this clinical study, based on the following: the children must be at least 3 years old and less than 7 years old; candidates for the study must meet the criteria for Autistic Disorder; and, she or he must have an IQ or developmental quotient (DQ) of at least 50.

Parents must give informed consent for their child to participate in this clinical research study, and must also be willing and able to comply with all study requirements. All clinical study-related care will be provided at no cost, including physical exams, psychological testing, and study medication. Compensation may be available to eligible parents or guardians. Health insurance is not required to participate.

If your child or a child you know has Autism, additional information about this clinical research study and how to participate is available at (800) 314-2597 and at www.chcautism.com.

If one follows the links, one finds that the study is for Sapropterin. The trial is on clinicaltrials.gov.

The Children’s Health Council is an established, well respected, private clinic and school based near Stanford University in California. The lead researcher is Dr. Glen Elliott, formerly of the University of California San Francisco. Sapropterin (Kuvan) is a drug used for the treatment of some forms of Phenylketonuria (PKU), a rare but severe developmental disorder. Most children in developed countries are tested for PKU at birth. A discussion of the use of Sapropterin for PKU is here.

As an aside, PKU results from a genetic disorder. I often hear autism parents say things like, “Doctors tell us that autism is genetic and, thus, untreatable”. Genetic doesn’t mean untreatable, and here is a classic example.

Back to the clinical trial. I don’t understand the proposed mechanism by which Sapropterin is supposed to work. What I do know is that there are at least two studies on the use of Sapropterin in treating autistic children (I will try to link to them soon). The studies were small and not conclusive, but the thought is that Sapropterin helps communication. There are at least a couple of doctors already using Sapropterin in the U.S., and I expect we would hear more about this if it weren’t for the fact that the drug is incredibly expensive. As in, about $50,000 per year. If I understand it correctly, Sapropterin was invented as much as 20 years ago, but has only recently been applied to PKU and that under an “orphan drug” patent. Since clinical trials have already been held on Sapropterin for PKU, one can find the side effects. Additional side effects include seizures in seizure prone patients.

Any drug, any therapy carries with it the potential for an adverse reaction. This is especially true in a clinical trial where the effects of the drug on the population studied are untested. The need for caution is compounded when the study subjects are children, and doubly compounded when the subjects are disabled children.

I do not take the idea of clinical trials on autistic children lightly. However, I will again list the reasons why these particular studies were interesting to me:

1) The drugs are relatively safe
2) the risks, especially for Sapropterin, are documented
3) the studies are controlled, so the contributions of the children involved are not wasted as with some of the flimsy studies we see periodically
4) the studies can answer questions about drugs already in use.

Blogger Shannon Rosa on the radio talking about “My Baby Rides the Short Bus”

18 Mar

I just linked to Shannon Rosa’s blog yesterday and here I go again. Her blog, Squidalicious, the adventures of Leelo and his potty mouthed mom, is a good read. She contributed to a new book, “My Baby Rides the Short Bus”.

I haven’t read the book yet. I heard about it a while back but I wasn’t really aware that it came out already. So, I was glad to get the podcast and listen about it. She is joined by Jennifer Byde Myers (who also contributed to the book) and Sarah Talbot (co-editor of the book).

http://www.kqed.org/assets/flash/kqedplayer.swf

The book, My Baby Rides the Short Bus, is available.

Shannon Rosa talks about the facts and myths of the “perfect mom” that many outside the disability community have as an expectation. She talks about the adjustment as her child grows from a young child to an adolescent and how the

To me, Ms. Rosa, Ms. Myers and Ms. Talbot present a good balance in talking about how there are extra difficulties parenting a disabled child.

Holly Robinson Peete on Huffington Post

18 Mar

Here’s something refreshing: an autism post on the Huffington Post that I would recommend people to read. Shifting Focus: 8 Facts About Autism the Media Is Not Covering is by Holly Robinson Peete.

I don’t agree with everything there. But, hey, I don’t agree with everything anyone writes (even some of what I’ve written!). Ms. Peete is known partly for her association with another celebrity autism mom, one whose methods and stances I find little to support. But, so what? Ms. Peete is a supporter of biomed. But, so what? Read her post. That is far from her main focus. Ms. Peete’s post is largely from a parent’s perspective and focuses on child autistics. Again, so what? She has some good things to say.

Here are her eight points:

1. Autism Is Unaffordable

Ms. Peete doesn’t put this in terms of being a burden. Instead she points out that therapies can be expensive. She doesn’t mention which ones specifically, but just speech and occupational therapy can be well beyond the means of most families. Figure 3-4 sessions a week at $100 or more a session.

Getting insurance to help out is far from easy.

2. Parental Guilt

So if you are blessed enough to afford it, in my experience it seems that some kids can improve tremendously with a mix of intensive behavioral, biomedical and other treatments. But the fact is so many likely will never be “recovered” and nothing, I mean nothing, makes a parent feel more guilty than thinking you could’ve “fixed” your kid but… well you didn’t or couldn’t afford to.

OK, I would have felt better with “helped” than “fixed”, but the idea is there. And, yeah, we could get into the whole “guilt is what drives the biomed movement” thing, but let’s not for now.

3. Puberty Plus Autism Can Be a Volatile Mix

Still in my future, but it is a future I have strong worries about.

4. Minority Children are Diagnosed with Autism Years Later Than Other Children

I think I’ve made it clear in the past few years that this is a major issue for me. Minority children are diagnosed later, and often never diagnosed. This is just plain wrong.

5. Autism Can Be Tough on A Marriage

This is a subject that I won’t go into. Ms. Peete points out that her husband has a book on the subject coming out.

6. Autism’s Effect on Siblings

Again, I won’t go into this much. I wish Ms. Peete didn’t put it in terms of what the siblings of autism “endure”, but life as the sibling of a disabled child is different from what we read about 99.99% of the time

7. Adults Living with Autism

Ms. Peete points out that the “face of autism is changing”. Well, let’s take it that the face the public sees is changing. Whether one believes in the “epidemic” or not, one thing everyone should be able to work together on is making life better for autistic adults.

8. Autism Advocates Who Actually Have Autism:

Hey, we just had a post about one. I wonder if Ms. Peete would join me in welcoming this

That said, my view is that it is time to shift the balance in advocacy. Autistic advocates should be the standard, not something worth commenting upon. Autism is spectrum, and there must be room for non-austistic advocates who stand for autistic family members or friends.

Squidalicious has a good post on this, Holly Robinson Peete: Autism Style, Towards Clarity and Grace.

Again, I think it is easy to fixate on what divides us. But, for me, if more of the biomed movement sounded like Ms. Peete, I think coalitions would be much easier to form.

Arthur Allen in Readers Digest and the false claims of false vaccine safety groups

17 Mar

For some reason I like Arthur Allen. Something about his approach appeals to me. This was solidified when he covered the Green our Vaccines rally in Washington DC. I thought Mr. Allen demonstrated pretty clearly that Jim Carrey didn’t really understand the subject, with one simple question. Mr. Allen was removed from the rally for no other reason than he disagrees. What has stuck in my mind is this phrase from his piece:

I walked over to the little retaining wall around the monument and greeted Dan Olmstead, a former UPI editor who runs Age of Autism, a Website that champions the vaccines-cause-autism line and belittles those who disagree. Despite our profound differences, Dan’s an old journalist like me, and he thought it was wrong they’d sic’d the cops on me.

I like the idea of both Arthur Allen and Dan Olmsted recognizing the fact that they are both “old journalists” and finding common ground. That’s stuck in my mind.

Arthur Allen has a new piece, H1N1: The Report Card, in Reader’s Digest. In it he interviews Secretary Kathleen Sebelius, Secretary of the Department of Health and Human Services in the U.S.. I wouldn’t know about the piece except for the fact that two bloggers (both from the Age of Autism) covered it claiming censorship. One piece, Sebelius Asks Media to Censor Autism Debate and another Did Kathleen Sebelius Pressure Media to Deny Vaccine Safety Voices?

What caused this concern on their parts? Well, this quote from Secretary Sebelius:

There are groups out there that insist that vaccines are responsible for a variety of problems despite all scientific evidence to the contrary. We have reached out to media outlets to try to get them to not give the views of these people equal weight in their reporting to what science has shown and continues to show about the safety of vaccines.

I agree with what Secretary Sebelius says–don’t give equal weight. As Orac at Respectful Insolence says: “Censorship.” You keep using that word. I do not think it means what you think it means. Asking the media to not give equal weight to groups whose science is poor at best (consider the decisions from the Omnibus hearings–“these are not close cases”) is not censorship. A well-researched article on the “vaccine debate” would be, precisely because it is well researched, clear that this is not a debate of groups with an equal standing. The science used to promote, say, the vaccines-cause-autism idea is of very poor quality (again, read the Omnibus decisions).

I have to say, I even take issue with the idea that this is some suppression of the voices of the “Vaccine Safety Voices”. Really? Vaccine safety?

The section of the Reader’s Digest article that stuck in my mind is this:

[Reader’s Digest]: You recently took part in the ribbon-cutting for a new Holly Springs, N.C., factory that will produce cell culture-based flu vaccines as early as 2012. Do you think cell culture vaccines will help?

[Kathleen Sebelius]: That plant is a big deal for two reasons, not the least of which is that it brings manufacturing capacity back to the United States. That’s a significant step forward—we’re not so reliant on production elsewhere. During the current epidemic, two companies had to fill orders in their own countries before they could make the vaccines available to us. Secondly, cell-based culture doesn’t necessarily speed the growth time, but it is more reliable. Once the growth is there, you have yield that is much more stable than with egg-based technology. It isn’t a silver bullet, but egg-based technology is 50 years old and we need to get to a variety of approaches that could be used in the future. So the investments need to continue: What are the alternative growth strategies? What else should we be looking at?

Why would a cell-based flu vaccine plant catch my eye? Because it would likely reduce adverse events from flu vaccines. Egg based technology leaves the risk for allergic reactions to egg proteins that might remain in the vaccine. By moving away from this technology, the U.S. could have a safer vaccine in place.

Did the “Vaccine Safety Voices” mention this at all in their pieces? Not at all.

Have the loudest voices in the so-called “Vaccine-Safety” movement in the U.S. ever stressed simple improvements such as this?

Quite simply: no.

This is one reason why I don’t consider groups like those represented by the Age of Autism or the “National Vaccine Information Center” to be true vaccine safety advocates.

Senate Committee approves nominations for National Council on Disability

17 Mar

I received this from Meg Evans of the Autistic Self Advocacy Network (ASAN) on the 12th. Sorry for the delay in posting it. Ari Ne’eman (of ASAN) has been nominated by President Obama to serve on the National Council on Disability. This nomination was approved by a Senate committee and will now go on to the full senate for a final vote.

Nominees for Disability Council, Other Federal Boards Approved by Committee

The following seven nominations for members of the National Council on Disability were approved by committee and will go on to the full senate for vote:

o) Gary Blumenthal, the executive director for the Associated of Developmental Disabilities Providers. Blumenthal previously served as director of the President’s Committee on Mental Retardation under President Clinton.

o) Chester Alonzo Finn, a special assistant with the New York State Office of Mental Retardation and Developmental Disabilities. Finn is blind and developmentally disabled and is president of the national board of Self-Advocates Becoming Empowered, according to the White House.

o) Sara A. Gesler, a state representative in the Oregon State House of Representatives and the youngest woman in the Oregon State Legislature. She founded the non-profit FG Syndrome Family Alliance, which serves families dealing with the rare developmental disability FG Syndrome.

o) Ari Ne’eman, the founding president of the Autistic Self-Advocacy Network. He also serves as vice chairman of the New Jersey Adults with Autism Task Force.

o) Dongwoo Joseph Pak, vice president and loan officer of the Farmers & Merchants Bank and board member of Acacia Adult Day Health Care Services. He has also serviced on the Special Needs Advisory Board for the Orange County Transit Authority and on the California State Rehabilitation Council.

o) Carol Jean Reynolds, the executive director of the Disability Center for Independent Living. She is also a member of the governing board of the National Council on Independent Living. She has faced several mental health and substance abuse issues and has been in recovery for 26 years, according to the White House.

o) Fernando Torres-Gill, the associate dean for academic affairs at the UCLA School of Public Affairs. He was the first assistant secretary for aging in the Department of Health and Human Services, and is a polio survivor, according to the White House.

Autism-study doctor facing grant probe

13 Mar

A story in the Philadelphia Inquirer today sheds some light on the situation involving Dr. Poul Thorsen.

Background for anyone who needs it: Dr. Thorsen is a Danish researcher who is co-author on a number of important studies. These include epidemiological studies on vaccines and autism. Dr. Thorsen did this work at the University of Aarhus, and has since left. There is an investigation ongoing apparently implicating Dr. Thorsen in a possible shortfall of about US$2M from the University.

Dr. Thorsen’s work was funded largely by the CDC. He started working for Emory University before leaving Aarhus (and this is a point of contention with Aarhus, as they state that Dr. Thorsen was not allowed a joint full-time appointment). He was also listed as adjunct faculty at Drexel University. Dr. Thorsen has also left Emory and his adjunct appointment at Drexel.

There has been a lot of speculation and discussion on this for the past week or so. The story has broken into the mainstream media, who have been good enough to get us some facts to work with. I have sent many emails over the past week, and almost all have been unanswered. I finally heard from one group in Denmark yesterday, and they to are unaware of the details of this case.

Today’s Philadelphia Inquirer has a story about Dr. Thorsen, Autism-study doctor facing grant probe by Jeff Goldstein:

A Danish scientist involved in two major studies that debunked any linkage of vaccines to autism is suspected of misappropriating $2 million in U.S. grants at his university in Denmark.

He also notes that Dr. Thorsen’s appointment at Drexler was unpaid, and he resigned it this week. (Drexel University is local to Philadelphia, where Mr. Goldstein works). Also of note, Dr. Thorsen was working with Emory University for about 6 years, much of that part time. The complaint by Aarhus involves him working “full time” in both Aarhus and Emory. This may go to the fact that it was pretty clear that Dr. Thorsen was at both Emory and Aarhus from his publication record. The complaint may not be about working in both places but, rather, having changed to full time status at Emory.

Mr. Goldstien notes that some groups have “seized” on these allegations to discredit the studies Dr. Thorsen worked on:

Anti-vaccine groups have seized on the allegations to contend that scientific studies disproving the vaccine link to autism are wrong. Those groups have long argued that thimerosal, a preservative in some vaccines, can cause autism, as can the MMR vaccine for measles, mumps, and rubella.

“I think it is quite significant,” said Dan Olmsted of the Age of Autism. “I think someone allegedly capable of ripping off his own university by forging documents from the CDC is capable of pulling off anything.”

And this is where the this situation becomes very important. If these allegations are true, does this negate the studies Dr. Thorsen worked on?

Mr. Goldstein addresses this with quotes from Mr. Olmsted (above) and people at the CDC and Denmark.

“Poul Thorsen had absolutely no influence on the conclusions regarding this paper,” wrote Mads Melbye, head of the division of epidemiology at the Statens Serum Institut in Copenhagen and senior author of the study, in response to e-mailed questions.

“Thorsen was not actively involved in the analysis and interpretation of the results of this paper,” Melbye said.

The second study, published in Pediatrics in 2003, examined 956 Danish children diagnosed with autism from 1971 to 2000. It concluded the incidence of autism increased in Denmark after thimerosal was removed from vaccines.

Kreesten Meldgaard Madsen, the lead author, said Thorsen played a minor role.

“Dr. Thorsen was not in a position to change or compromise the data,” Madsen wrote. “Dr. Thorsen was part of the review cycle, but never very active in giving input. Dr. Thorsen never had access to the raw data nor the analysis of the data.”

I doubt these statements will mollify Mr. Olmsted’s readers.

In a piece on WHYY (a public radio station in Philadelphia) has a story, Investigation of autism researcher’s conduct sparks controversy.

Dr. David Mandell of the Center for Autism Research agrees the studies Thorsen worked on should be reviewed. But he doesn’t believe the research has been compromised. He noted that Thorsen was not a lead researcher, the studies used government data, and they were peer-reviewed. This view is echoed in a statement from the Centers for Disease Control, which partly funded the vaccine research.

So, where does this leave us? With a lot more questions than answers still. One question in my mind at least is whether Dr. Thorsen is accused of transferring money to his own use or if he is accused of transferring money to fund his research at Emory when he left Aarhus. That aside, no matter what happens from here, this will be used to imply that vaccine-autism research (and not just that by Dr. Thorsen) is performed by corrupt individuals and should not be trusted.

Assume that the allegations are real. I can state that I am very angry at that possibility. I do not like dishonest people. I do not like dishonest researchers.

Mostly, I don’t like the fact that this will be (and already is being) used to put doubt in a lot of people’s minds about the role of thimerosal and MMR and autism. $2M is a small sum compared to the amount of suffering that will go on as this breaths a little life back into that movement.

My guess is that some readers are now ready to blame me of bias, of believing that Dr. Thorsen’s studies are accurate when I should be questioning everything he did. Let’s ignore the statements by his collaborators that Dr. Thorsen didn’t have access to the data to manipulate. Let’s just stick with the fact that the studies Dr. Thorsen worked on agree with the results of multiple other studies. The surprising outcome would be if on review the conclusions changed.

I am sure this story isn’t going away. And it should not. We need to know and we deserve to know what the details are here. Beyond that, I am sure that this will be forever in the lore of the vaccines-cause-autism community and will be used to convince ever more people to join.

For that, whoever is responsible for this mess, I am angry.

Vaccine Court Decision: thimerosal containing vaccines do not cause autism

12 Mar

The decisions are in for the second phase of the Omnibus Autism Proceedings–the “vaccine court” trials to determine if autism can be considered as a vaccine injury. The first set of decisions were handed down last year (those regarding the MMR as a causative agent). This set explored whether thimerosal, the mercury containing preservative formerly used in childhood vaccines, could cause autism.

The decisions are long, and I expect there to be much discussion. Below are the final paragraphs from the decisions. These are for the three “test cases”, the hearings held for three specific children who petitioned for compensation on the basis of autism as a vaccine injury. They are clear and decisive: the evidence does not support thimerosal containing vaccines as causing autism, in general or in these three children in specific.

Mead:

Petitioners’ theory of vaccine-related causation is scientifically unsupportable. In the absence of a sound medical theory causally connecting William’s received vaccines to his autistic condition, the undersigned cannot find the proposed sequence of cause and effect to be logical or temporally appropriate. Having failed to satisfy their burden of proof under the articulated legal standard, petitioners cannot prevail on their claim of vaccine-related causation. Petitioners’ claim is dismissed, and the Clerk of the Court SHALL ENTER JUDGMENT accordingly.

King:

Thus, I feel deep sympathy for the King family. Further, I find it unfortunate that my ruling in this case means that the Program will not be able to provide funds to assist this family, in caring for their child who suffers from a serious disorder. It is certainly my hope that our society will find ways to ensure that generous assistance is available to the families of all autistic children, regardless of the cause of their disorders. Such families must cope every day with tremendous challenges in caring for their autistic children, and all are deserving of sympathy and admiration. However, I must decide this case not on sentiment, but by analyzing the evidence. Congress designed the Program to compensate only the families of those individuals whose injuries or deaths can be linked causally, either by a Table Injury presumption or by a preponderance of “causation-in-fact” evidence, to a listed vaccine. In this case, the evidence advanced by the petitioners has fallen far short of demonstrating such a link. Accordingly,

Dwyer:

Petitioners have not demonstrated by a preponderance of the evidence that Colin’s condition was either caused or significantly aggravated by his vaccinations. Thus, they have failed to establish entitlement to compensation and the petition for compensation is therefore DENIED. In the absence of a motion for review filed pursuant to RCFC, Appendix B, the clerk is directed to enter judgment accordingly.

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