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GFCF of no benefit

19 May

This post is from Eureka Alert

A popular belief that specific dietary changes can improve the symptoms of children with autism was not supported by a tightly controlled University of Rochester study, which found that eliminating gluten and casein from the diets of children with autism had no impact on their behavior, sleep or bowel patterns.

The study is the most controlled diet research in autism to date. The researchers took on the difficult yet crucial task of ensuring participants received needed nutrients, as children on gluten-free, casein-free diets may eat inadequate amounts of vitamin D, calcium, iron and high quality protein. Unlike previous studies, they also controlled for other interventions, such as what type of behavioral treatments children received, to ensure all observed changes were due to dietary alterations. Past studies did not control for such factors. And although no improvements were demonstrated, the researchers acknowledged that some subgroups of children, particularly those with significant gastrointestinal (GI) symptoms, might receive some benefit from dietary changes.

“It would have been wonderful for children with autism and their families if we found that the GFCF diet could really help, but this small study didn’t show significant benefits,” said Susan Hyman, M.D., associate professor of Pediatrics at Golisano Children’s Hospital at the University of Rochester Medical Center (URMC) and principal investigator of the study which will be presented Saturday (May 22) at the International Meeting for Autism Research in Philadelphia. “However, the study didn’t include children with significant gastrointestinal disease. It’s possible those children and other specific groups might see a benefit.”

In response to widespread parent-reported benefits, URMC initiated the trial in 2003 to scientifically evaluate the effects of the gluten-free and casein-free diet, which eliminates wheat, rye, barley and milk proteins. Parent observation has played an important role in earlier treatment discoveries in children with autism, such as melatonin’s benefits for sleep.

Hyman’s study enrolled 22 children between 2 ½- and 5 ½-years-old. Fourteen children completed the intervention, which was planned for 18 weeks for each family. The families had to strictly adhere to a gluten-free and casein-free diet and participate in early intensive behavioral intervention throughout the study. Children were screened for iron and vitamin D deficiency, milk and wheat allergies and celiac disease. One child was excluded because of a positive test for celiac disease and one was excluded for iron deficiency. Other volunteers who were excluded were unable to adhere to the study requirements. The children’s diets were carefully monitored throughout the study to make sure they were getting enough vitamin D, iron, calcium, protein and other nutrients.

After at least four weeks on the strict diet, the children were challenged with either gluten, casein, both or placebo in randomized order. They were given a snack once weekly with either 20 grams of wheat flour, 23 grams of non fat dried milk, both, or neither until every child received each snack three times. The type of snack was given in randomized order and presented so that no one observing – including the family, child, research staff and therapy team – knew what it contained. The snacks were carefully engineered to look, taste and feel the same, which was an exercise in innovative cooking. In addition, the nutrition staff worked closely with the families to make a snack that met their child’s preferences. Casein was disguised in pudding, yogurt or smoothies and gluten in banana bread, brownies, or cookies depending on the child’s food preferences.

Parents, teachers and a research assistant filled out standardized surveys about the child’s behavior the day before they received the snack, at two and 24 hours after the snack. (If the child’s behavior wasn’t usual at the scheduled snack time, the snack would be postponed until the child was back to baseline.) In addition, the parents kept a standard diary of food intake, sleep and bowel habits. Social interaction and language were evaluated through videotaped scoring of a standardized play session with a research assistant.

Following the gluten and casein snacks, study participants had no change in attention, activity, sleep or frequency or quality of bowel habits. Children demonstrated a small increase in social language and interest in interaction after the challenges with gluten or casein on the Ritvo Freeman Real Life Rating Scale; however, it did not reach statistical significance. That means because of the small difference and the small number of participants in the study, the finding may be due to chance alone.

The investigators note that this study was not designed to look at more restrictive diets or the effect of nutritional supplements on behavior. This study was designed to look at the effects of the removal of gluten and casein from the diet of children with autism (without celiac disease) and subsequent effect of challenges with these substances in a group of children getting early intensive behavioral intervention.

Hyman said, “This is really just the tip of the iceberg. There are many possible effects of diet including over- and under-nutrition, on behavior in children with ASD that need to be scientifically investigated so families can make informed decisions about the therapies they choose for their children.”

Autism does not cause divorce

19 May

A new study at IMFAR reports:

Brian Freedman, PhD, lead author of the study and clinical director of the Center for Autism and Related Disorders at Kennedy Krieger Institute, said the findings seem to debunk a lot of the general understanding about high divorce rates among parents of children with autism. Dr. Freedman and his research team found that 64 percent of children with an autism spectrum disorder (ASD) belong to a family with two married biological or adoptive parents, compared with 65 percent of children who do not have an ASD.

This is the first scientific study (I believe) that has actually addressed this question. We can of course all recall the utterly unfounded scare stories of 80% put about by know-nothings such as Jenny McCarthy who said on an episode of Oprah:

Soon after Evan’s diagnosis, Jenny says the stress of raising a child with autism began to take a toll on her marriage. An autism advocacy organization reports that the divorce rate within the autism community is staggering. According to its research, 80 percent of all marriages end.

“I believe it, because I lived it,” she says. “I felt very alone in my marriage.”

and which autism organisation was that? You might not be amazed to discover its the equally know-nothing bunch at the National Autism Association.

NAA is presently conducting a national divorce survey of autism families. Several organizations and news outlets have used the often-quoted autism divorce rate of 80%–NAA hopes to confirm or update that percentage before referencing it in its program materials.

Get a clue NAA – maybe you should’ve done the research before letting rent-a-gob loose on the Oprah show.

Storm in a teacup

15 May

A piece from the Philadelphia Inquirer demonstrates how various vaccine scares begin.

Using powerful new DNA technology, Delwart’s San Francisco team detected fragments of a pig virus in GlaxoSmithKline’s Rotarix, which protects babies from a diarrhea-causing infection. The pig virus is common in pork products and is not known to cause disease in animals or humans.

…

We expected to reassure; we ended up not reassuring,” Delwart, a virologist with the Blood Systems Research Institute, said this week. “We ended up creating quite a bit of a storm.

Yet of course the usual suspects used this total non-entity of a story to further their own anti-vaccine agenda:

This “is an important wake-up call for industry and government,” said Barbara Loe Fisher, president of the National Vaccine Information Center.

How exactly isn’t explained. This is after all a story where a vaccine carries a component that *is not known to cause disease* . Neither the FDA or the European Health Agency said the vaccines containing the component shouldn’t be used. As Paul Offit said:

“You could apply this new technology to things gummed by a 6-month-old – a Cheeto, a piece of apple – and find much worse” microbes than the pig virus, Offit said. “How does it help to find things that are not known to be harmful? It’s like taking thimerosal out of vaccines. Has that made vaccines safer? No.”

Or more dangerous.

We *have* to start getting over our collective heebie-jeebies every time something perfectly safe is found in a vaccine and start realising that the people who are advocating that we _do_ have an attack of the heebie-jeebies are those who have a single item agenda – promoting anti-vaccineism.

Byrd and Melanie Billings

13 May

Byrd and Melanie Billings were adoptive parents. They took care of disabled children, including autistic children. New stories vary on how many kids the Billings’ had, but one states that they had 16 kids, 12 of whom were adopted. Many of their children were disabled, including autism and Down syndrome.

I’m am in awe of these people.

Unfortunately the way I’ve heard about this family is through tragedy. Apparently a small group (seven men and a woman) entered their home and murdered them. Their children were present. This happened last year, but some of the people involved in this murder have decided to cooperate in return for lower sentences.

Byrd and Melanie Billings Murder: Teen Pleads in Fla. Slaying of Wealthy, Adoptive Parents

More here: Billings suspect enters plea of no contest

Here is video from last year, talking about the case. But it talks about the family as well.

http://abcnews.go.com/assets/player/walt2.6/flash/SFP_Walt.swf

An older sibling plans to care for the 13 children.

Nature Fubar

13 May

Nature, the usually reputable Science magazine have launched a Scitable Autism section and with it screwed up their usual impeccable attention to detail.

Who for example thought it necessary to put:

Determining the cause of — and the cure for — autism is crucial for our society

I wonder. And who thought it necessary to link to no less than three anti-vaccine links on the home page of this….blog? Wiki? Two links to Autism Speaks whose controllers recently attended a DAN! conference and one link to ARI itself.

Its a ridiculous and desperately sad state of affairs when even Nature, that bastion of good science resorts to scaremongering about autism and promoting an anti-vaccine viewpoint.

The Autism Hub

7 May

As many will know, the Autism Hub has been put on hiatus. Many will also know why but if you don’t the reason extends to cyberbullying between a minority of members and their misogynistic attitudes to others on the Hub. The Admin team of the Hub had no choice but to put the Hub on hiatus as I see it.

BUT. I hope this is a temporary hiatus. The world needs a place like the Autism Hub, a place which has transformed itself from its first incarnation when I built it of a blog aggregator of blogs that followed a neurodiversity creed into something much more than that. It became an ideal, a banner which stood in lots of peoples minds – both autistic, NT and other forms of ND – as a force for good if I might be so simplistic. In a web that was covered with material about how awful autism was, it was refreshing to read material that challenged that simplistic view. And whether the blog was written from a standpoint of pure autism advocacy or a standpoint of tackling the antivax arm of autism (and all the flavours in between), refreshing it was and for me refreshing it remained.

One highlight was seeing autistic people and their NT allies presenting material under the banner of the Hub at San Diego University. Thats when I realised how much the Hub had changed beyond my own simplistic view of what it was.

By that time of course I had given up ownership and control of the Hub so the credit for that achievement did not lie with me but with the two current admins. It was they who oversaw the transition of the Hub into a flagship of ideas and I was thrilled to see it happen.

However, more than the admins, the formation of the Hub is made up of its members and they more than anyone dictate what the Hub should be. Sadly this meant for the Hub that some members took advantage of this liberty and thought that meant that in an effort to carve out their own identity it gave them free reign to abuse other Hub members.

And so we’re in the situation we are now where the actions of a few have impacted on something that gave great benefit to many. That abuse has led to a situation where the Hub cannot be administrated effectively without the current Admins effectively becoming full time unpaid administrators. Something that it neither fair nor feasible.

I don’t have any firm and fast idea about what to change or how but I do know that for Hub members, this is – as it ever has been – YOUR hub, powered by you for no ones financial gain and for all of our intellectual and moral gain. To lose it because of the actions of a few people goes beyond a shame and verges on tragedy. Do you really want to leave something – or see this something die – because we cannot deal with rogue members? Now is the time for all of us who are members to have full, frank and open talks about the FUTURE of the Hub, not to lament its golden past. So please – fellow members – lets talk.

Frontline’s Vaccine War episode ignites…well, a war of words

3 May

I first heard about the Frontline episode on “The Vaccine War“, it was from supporters of Jenny McCarthy. They were online telling us all about this upcoming episode and even providing links to where we could order the DVD.

Times have changed.

The show aired and it was not about how Jenny McCarthy and the rest are right and that vaccines cause autism. Jim Carrey had made a statement a while back, “We aren’t the problem. The problem is the problem.” Aside from the fact that it is a very strange way to phrase what he wanted to say, Frontline showed that, yes, indeed, you are the problem.

The night that The Vaccine War aired, Dr. Jay Gordon (Jenny McCarthy’s pediatrician) blogged about how his interview was left out. Jenny McCarthy followed shortly afterwards. Both were on the Huffington Post. Dr. Rashid Buttar was also interviewed and not shown. He took to a free press release to express his opinion.

Since then, many people have been claiming that Frontline should have given more time and weight to the vaccine-causation side. I guess representatives from a “Parent Founded, Parent Led” organization are not enough weight. They need the opinions of some doctors. As Kim at the Countering Age of Autism blog points out, the Age of Autism blog put their piece complaining about Frontline twice. AoA just changed the title and a bit of the introduction.

The editors of the Frontline episode have responded to the criticisms that some interviews were not aired:

Many thanks for your feedback on the program. FRONTLINE went to considerable lengths to include a wide range of viewpoints, even in the face of very strong scientific evidence against the hypothesized autism link to MMR and thimerosal. Despite the consistent negative epidemiology and the definitive verdict of the federal vaccine court, we included views from people who wanted more and different studies. The program also gave a great deal of time to the arguments of vaccine hesitant parents who think the CDC schedule is bloated. The companion FRONTLINE website contains full interviews with different stakeholders, including Dr Robert Sears, who promotes an alternative spread out vaccine schedule. The website also hosts a robust public conversation where a full range of viewpoints are being aired and engaged.

When making long form documentaries like FRONTLINE, it often happens that some interviews don’t make it into the finished program. Several interviews failed to make the final cut of “The Vaccine War”–not just yours but also interviews with contributors who support the CDC vaccine schedule.

One interview which did not air was that of Arthur Allen. He has commented on a few blogs. Not complaining about his interview being cut, but about people like Dr. Jay who don’t understand that in journalism these things happen. Interviews get cut.

That all said, let’s consider the argument that Frontline should have aired more of the vaccine-skeptic viewpoint. That people like Rashid Buttar should have been given more air time. Dr. Buttar, who was recently reprimanded by his state’s regulatory agency. Dr. Buttar who has used urine injections on autistic children.

For those who would like to have seen more of the opinions of such doctors, consider if Frontline does another episode entirely. This time, instead of “the Vaccine War”, they consider a show on “Curing Autism”, showing alternative medical practitioners.

I bet at this point many in the biomed community are saying, “yes!”

I put it to them that they didn’t learn their lesson. There is no good evidence behind the alternative medicine used in autism. Just like they thought that “The Vaccine War” was going to finally tell their story, another Frontline episode would not go their way. Yeah, it would tell their story, just as The Vaccine War did.

Let me put it another way. Think of two short words….Trine Tsuderos. I could have just as easily said Pat Callahan, as she worked with Ms. Tsuderos on the articles at the Chicago Tribune, but somehow it is Trine who gets the attention. It is her name that calls up the memories.

For those asking “Trine who?”, Ms. Tsuderos and Ms. Callahan wrote a series of articles for the Chicago Tribune. One article should give you an idea of how that series went: Autism treatments: Risky alternative therapies have little basis in science.

You see, the team of Callahan and Tsuderos took a look at alternative therapies and gave some balance–they asked the experts in areas such as neuroinflammation in autistics whether the alt-med practitioners were correctly applying the science. They weren’t.

So imagine if you will, Fronline putting Dr. Jay, Dr. Bob, Dr. Buttar’s interviews on the air. Together with Dr. Geier and his “lupron protocol”. Together with Prof. Boyd Haley and his industrial chelator turned nutritional supplement. Together with people “treating” neuroinflammation before they know whether it is harmful or beneficial.

Consider that team. Then consider the responses from experts in medical toxicology. Experts in neuroinflammation. Experts in hormones and autism.

Consider how that would play out before the American public.

It would not go well for the alternative medical community. Not because of any bias, but because their “science” is woefully poor.

Review of Frontline’s The Vaccine War

29 Apr

The Vaccine War has aired. Judging by the responses, one might consider it a success. Pro vaccine groups like Every Child By Two were telling people to watch it. The Autism Science Foundation “highly recommends” watching it. On the other side, the organizations represented by the Age of Autism blog (Generation Rescue, the National Autism Association, SafeMinds, the Autism Research Institute and TACA) are very upset. Jenny McCarthy has gone to the Huffington Post with her side of the story, as has Dr. Jay Gordon, whose entire interview was cut from the program.


An unofficial (and incomplete) transcript is here.

That all said, I both appreciated the program and had my fears realized. In this case, my fears were that people would be given a platform to spread misinformation. And it happened. Jenny McCarthy and others made statements that were, in my view, misinformation. But, I appreciated the fact that Frontline took the time to counter much of the misinformation with actual experts discussing real science.

Frontline describes the show as:

In The Vaccine War, FRONTLINE lays bare the science of vaccine safety and examines the increasingly bitter debate between the public health establishment and a formidable populist coalition of parents, celebrities, politicians and activists who are armed with the latest social media tools — including Facebook, YouTube and Twitter — and are determined to resist pressure from the medical and public health establishments to vaccinate, despite established scientific consensus about vaccine safety.

I think the show accomplished this. There was some cost in terms of allowing Generation Rescue’s misinformation message in TV once again. But, this time, this time they are the problem.

If you watch the introductory 2 minutes of this video, you will get some idea of how the show is presented

Parents, both pro vaccine and not, activists, public health workers and researchers like Dr. Offit telling various sides of the story, with the narrator tying it together.

Narrator: Tonight on Frontline: They’re hailed as medicine’s greatest triumph: conquering smallpox, diphtheria, polio and more. But today, some Americans question if all those vaccines are worth the risk.

The show is in four segments. The titles for these segments should, again, give you an idea of the tone of the show.

1. A visit to Ashland, Oregon. In some American communities like this one, parents are hesitating to vaccinate their children, despite their doctor’s advice.

2. Eroding faith in vaccines. Skeptics target Paul Offit, inventor of the rotavirus vaccine. And many parents are wary of vaccines because they no longer see the diseases.

3. Fearing vaccine risks, especially autism.. Vaccine skeptics like celebrity Jenny McCarthy have organized a community of parents concerned about a vaccine-autism link.

4. The science that launched the movement. A British doctors ’98 study theorized that the measles vaccine causes autism. Soon vaccine critics began questioning other additives in vaccines.

5. What epidemiological studies reveal. No link is found between autism and the MMR shot or thimerosal. And the British doctor’s ’98 study is discredited, but critics demand more studies.

6. Vaccines, what’s at stake. The debate goes beyond the medical risks-benefits: it involves parents’ rights to make choices v. the needs of the community.

In the first segment, they interview a pro-vaccine mother in Ashland. She notes that if there is an outbreak, the response may get contentious. It may get ugly.

Beyond the direct human cost, one of my worries: how much blowback will there be to the autism communities? How much blame will be applied and what will it cost?

As part of the introduction, The Vaccine War discusses the story of Desiree Jennings. She was a Washington Redskins cheerleader who claimed dystonia as an adverse reaction to her vaccine. Her story broke out not through the TV news show that covered her story, but through YouTube. Jenny McCarthy is quoted about how Generation Rescue took Ms. Jennings to see Dr. Rashid Buttar and how chelation and HBOT cured her.

What makes the Desiree Jennings story even more interesting is the possibility that the vaccine-injury/dystonia story may not be real. As noted on LeftBrainRightBrain, Ms. Jennings was later followed by cameras from a TV program and shown to be driving and walking normally.

The possibility that Generation Rescue is using the story even though it may not be true was probed by Frontline. Here is a part of an interview from Frontline with one of Generation Rescue’s founders:

[Frontline]Talk about the viral spread of an image over the Internet, like [Redskins cheerleader] Desiree Jennings’ flu shot story, for example.

It’s remarkably powerful what an image or an idea can do in today’s day and age, and for a group of parents who feel completely outmatched — because think for a moment about who our enemy is; our enemies are the largest pharmaceutical companies on the planet, making billions of dollars in net profit a year — you’d think that we could never compete with that. But an idea can transmit itself powerfully and very cheaply for millions to see.

So in the case of Desiree, here you have an image of this beautiful woman who’s been severely disabled that literally tens of millions of people view overnight, and imagine the chilling effect that has on a flu vaccine that she attributes as the cause of her condition. It’s remarkably powerful.

[Frontline] Does it matter whether it’s true or not?

Truth always bears out in the end, so I’m a firm believer in that. Are there moments in time where truth is exaggerated or expanded? Absolutely. But truth bears out in the end. …

Perhaps I missed it, but it appears to this reader that Frontline’s question was completely dodged. Does it matter whether the Desiree Jennings story is true or not? I think so. But what seems important to Generation Rescue is not the truth of the story, but the fact that it is a gripping narrative that sells their message.

The Vaccine War has a rather large cast, if I may call them that. Parents both pro and anti vaccine, a writer from Ashland who is anti-vaccine, Paul Offit, bioethicist (and polio survivor) Arthur Caplan, Jenny McCarthy, Anthony S. Fauci (immunologist from NIAID), Cynthia Cristofani (pediatric intensivist), Alvaro and Myrian Fontan (a family who almost lost their daughter to whooping cough) and J.B. Handley, Barbara Loe Fisher–plus more.

In some ways, “The Vaccine War” takes the same approach that Dr. Offit uses in books like “Autism’s False Prophets”. Let the skeptics make their points, ask their questions, then respond. Sometimes this is quite jarring.It is tough to sit back and listen to someone spread information and wait for the response.

The Vaccine War is well researched. Even though people like Jenny McCarthy got some air time for their ideas, they are quite upset about the Frontline episode.

Perhaps I am the only one who will find this ironic. In response to this episode, one which discusses how groups like Generation Rescue use social networking on the internet to get their message out, they are taking to social networking. Twitter, blogging…

As noted above Jenny McCarthy and Dr. Jay Gordon have taken to the Huffington Post to respond to the show. the Age of Autism is being very critical. They are attempting to “poll mob” the Frontline website. (humorous aside–they haven’t figured out that the survey doesn’t record their answers. It only shows you how your responses compare to the actual survey.)

If you have friends, family who are wondering about the vaccine/autism “controversy”, this is a good show to refer them to. It gives both sides. It allows people like Jenny McCarthy to give her viewpoint–and it gives the response.

Watch Frontline’s Vaccine War online

28 Apr

I’ve only been able to watch the first few minutes so far, but I wanted to make this available.

(I’ve emailed asking if there is a captioned version)

If you want to read–written interviews:

Jenny McCarthy
She’s an actress, celebrity and activist. Her son was diagnosed with autism following a series of vaccinations, and she’s helped organize a movement of parents concerned about a vaccine-autism link.

Cynthia Cristofani, M.D.
A pediatric intensivist who takes care of children who need critical care, Cristofani decided to start documenting the rare cases of vaccine-preventable illness that turned up in her Portland, Oregon ICU.

Anthony S. Fauci, M.D.
He is an immunologist and the director of the National Institute of Allergy and Infectious Diseases [NIAID].

Alvaro and Myrian Fontan
They watched in anguish as their 40 day-old baby Vanessa — not yet old enough for the pertussis vaccination — fought for her life.

J.B. Handley
A businessman whose son was diagnosed with autism, Handley co-founded with his wife the autism advocacy site Generation Rescue.

Paul Offit, M.D.
Co-developer of a vaccine for rotavirus, the leading cause of severe diarrhea in children, Offit is chief of the infectious diseases division at The Children’s Hospital of Philadelphia.

Frontline Vaccine War episode on in the US tonight

27 Apr

I’ve written about the upcoming Frontline episode, The Vaccine War, a few times already.

Reviews are in the press already. It looks to be an interesting show. Jenny McCarthy, Generation Rescue, the (self-named) National Vaccine Information Center will get some air time. But, they are there to demonstrate the current problem. It is not a program about how they are fighting the good fight.

That said, don’t expect a full body slam. Don’t expect a Respectfully Insolent takedown of those who oppose vaccines.

Because of that, I expect some groups to claim some level of victory from tonight’s show. I expect to hear how they got their message out to a few more families. How they are that much closer to instilling fear and “bringing the vaccine program to its knees”.

The fact of the matter is this: So far, the U.S. hasn’t seen the large outbreaks of diseases like Measles. But if there are in the future, the “autism community” and, specifically, groups like Generation Rescue will carry some blame. Future editions of shows like “Frontline” will be harsh.

One review in on the Frontline episode is at Entertainment Weekly: Should kids be vaccinated? ‘Frontline’ and science say ‘yes’; Jenny McCarthy and a lot of selfish Gen X’ers say ‘no’.

Intro paragraph:

Tonight on Frontline, “The Vaccine War” presents both sides of the controversy over whether young children should be vaccinated for diseases such as measles and polio, and in a rare display of TV-news common sense and independence, one side is shown to be — sorry — wrong. Frontline‘s documentary will, I hope, leave any sensible viewer feeling that you’d have be deluded or selfish not to have your kids vaccinated.

conclusion:

What makes this Frontline — “The Vaccine War” is written, produced, and directed by Jon Palfreman — so compelling is seeing the smugness of the vaccine-deniers contrasted with the facts and figures of the historical record and current studies being down about the efficacy of things like the MMR triple shot.

Other reviews are not so harsh on the vaccine rejectionists.

But, this is a wake-up call for the army working to “bring the US vaccine program to its knees”. If successful, don’t expect to avoid blame.

It is a wake-up call. I expect they will hit the snooze alarm.

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