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Jenny McCarthy's Mother Warriors

24 Sep

Jenny McCarthy’s bullshit-fest starts up again today. Look forward to her and Jim Carrey on various US talk shows.

Her new book is called ‘Mother Warriors: A Nation of Parents Healing Autism Against All Odds’ which is equally amusing (mother warriors?) and, well, bollocks. A nation of parents healing autism? Really? Where? I’ve been having this conversation with the autism/antivax loons for over five years now: show me the kids who were once autistic who are now cured by biomed? And I don’t mean your sisters best friends cousins kid, I mean case studies. I keep hearing that there are _thousands_ of these kids – surely some doctor treating them somewhere thought – hey, a case study would be a good idea.

And this definitely includes Chief Mother Warrior McCarthy herself and her somewhat loose definition of what ‘healing autism’ is. I posted awhile ago about how Chief Mother Warrior McCarthy had described her son as recovered (as oppose to recover_ing_) in April this year and then go on to describe how she was planning to chelate Evan in June 2008. Why? If he’s recovered, why is the poor lad being subjected to chelation?

Meh, cup and ball trick much?

So, I thought – given that Chief Mother Warrior McCarthy is doing it – that we might take a closer look at chelation in the form of quotes from Mother Warrior’s on the CK2 (Chelating Kids 2) Yahoo group. I’ll say up front, it makes pretty grim reading but I think people need to know what exactly being a Mother Warrior entails. These are all from different people.

It just takes time. My twins (almost 8 now) have been doing IV CaEDTA roughly every 2 weeks for over 3 years (71 and 78 IVs). The first half-dozen or so were really traumatic, then the kids started realizing it really wasn’t so bad after all and got to the point where they didn’t need to be held anymore, then they didn’t cry anymore, etc.

My son is 6 and I have to hold him down for the IVs – we’ve done 10. Today he got poked 3 times and has purple hands from blowing veins. As I’m lying on him, both of us sweating with 2 nurses trying to do the IV, I’m thinking is is worth it?

I used to give my son a valium before the IV’s when we first started. We had to give him 15 mgs when he was about 90 pounds.

We give my son 300 mg of L-Theanine 90 minutes prior to the IV…

We are considering IV chelation with our almost 7yr old. We started with nutritional IV’s just to see how he would do. THe first one was rough the second was a piece of cake. My Mom instinct tell me they made him feel better…

We do IV chelation on experienced regression during the first 3 or 4 months. I would consider them “healing” regressions, though because he didn’t stay in a regressed state and always came out of the regression….

Now these are bad. Blown veins, chelation over periods of years, kids being medicated to calm them down from their obvious terror. But these next are worse.

Any thoughts or experiences with chelation on children under 16 months? The child in question was tested moderately mercury toxic….

My 15 month old son had a porphyns test by Phillipe Auguste labs that showed very high lead and mercury that spiked off the page, so our DAN is starting him on DMSA suppositories once his OAT test comes back demonstrating that he’s medically stable enough to chelate…

We actually began chelating our son at age 2

And the absolute crowning horror. There aren’t words for this last one so I’m just going to quote it. Remember – this is an example of McCarthy’s Mother Warriors in action describing a process she was going to try on her own son.

I started chelating my son at 13 months of age w/ IVs. Dr Bradstreet’s office chelates little kids. It was actually easier to give him the IVs before he turned 2. My DAN, Scott Smith, says that kids under 3 chelate much faster and it is a good idea to start early.

David, I am not embarrased but puzzled

23 Sep

I just read David Kirby’s short post dig on Age of Autism at the review Dr. Rahul K. Parikh made yesterday on Salon.com. I am quite puzzled by David’s post I have to say.

In his overly simplistic way, this pediatrician from Northern California, who has repeatedly ignored third-party invitations to debate me in an open forum, praises Dr. Paul Offit for his attacks on groups like DAN! and Generation Rescue, while holding up Autism Speaks as a bastion of rational scientific thinking, one that does not succumb to what this doctor calls the “slanted science” of thimerosal research:

While Offit focuses on those groups (like Defeat Autism Now! and Generation Rescue) that have been very confrontational and that support slanted science, there are many … groups (like Autism Speaks) that have been broader in their search for autism’s causes and cure.

Overly simplistic is not a fair or polite way to describe Dr. Parikh or the review at Salon. The quote David chooses to single out is precise and accurate. DAN! and GR _are_ confrontational. Several of their members have expressed themselves in terms that are aggressive and violent. They _do_ support slanted science. Generation Rescue once published an ad in (I think) the NYT that thanked researchers for their work on mercury. Several of the named researchers immediately sent an (unpublished) letter to the editor to protest that their work was misrepresented. How much more slanted can you get?

And David, if you’re going to take Dr Parikh to task for ignoring invitations to debate you in an open forum, should I take you to task for refusing to participate in a debate with me in an open forum? Because you did.

David then goes on to suggest that Autism Speaks are just as slanted as GR or DAN! by citing the fact that they have sanctioned three studies that concentrate on vaccines.

Dr. Parikh – Please get your rhetorical ducks in a row, or refrain from participating in this discussion altogether. Misinformation is a dangerous thing. If Autism Speaks is not “slanted,” then how do you explain their support for thimerosal-autism research?

If we look back at what Dr Parikh actually _said_ we can see the picture is clear. Dr Parikh said:

….there are many … groups (like Autism Speaks) that have been broader in their search for autism’s causes and cure.

Autism Speaks have funded three out of twelve studies that concentrate on vaccines. I would not describe a 25% hit rate as supporting thiomersal-autism research. I would describe it exactly as Dr Parikh – ‘broader in their search’. In other words, 75% of their research is _not_ about vaccines. That’s pretty broad.

Its a puzzle. I can only think David didn’t understand Dr Parikh’s rhetoric. I’ll close with an echo of David’s challenge to Dr Parikh. If you ever do change your mind about the debate – a debate in the most open arena of all – a weblog – just let me know. There’ll be no money in it at all but you’ll be able to say you did what Dr Parikh didn’t and accepted the challenge.

Dr Parikh responds.

Scientology and HBOT

23 Sep

At the start of the month I read a post about HBOT on the OC Register. Standard fare but something about it nagged away at me.

I realised it was the sidebar where the author had listed two purveyors of HBOT in Orange County. One of them was called Whitaker Wellness. The name rang a bell so I found the website and lo and behold, found the connection – Julian Whitaker, MD.

Whitaker Wellness in Costa Mesa was the first hyperbaric oxygen therapy clinic in Orange County to treat a large number of autistic patients.

I first blogged about Whitaker two years ago. It turns out that he has some interesting friends:

[Whitaker]….is with the Citizens Commission on Human Rights, established by the Church of Scientology to expose what the church calls psychiatric violations of human rights and who pushes a variety of CAM treatments including chelation.

My goodness these Scientologists get about.

Julian Whitaker is – like all DAN! docs and Scientologists down on toxins and big on how to get rid of them all but intriguingly the word ‘autism’ is not used once on his website, although a web search for Dr Whitaker and autism reveals lots of results.

I was concerned two years ago at the prospect of Scientologists being so involved with the autism/antivax movement and I still am. I hope Dr Whitaker is totally upfront with all his patients regarding his beliefs.

Salon – Inside the vaccine scare

22 Sep

Salon redeems itself from producing what Orac at the time called biggest, steamingest, drippiest turd ever dropped on the web.

Three years ago Salon published the notoriously innacurate ramblings of RFK Jr. After uproar in the web science community and numerous fixes and amends to the original piece, what was left was still an awful piece of credulous rubbish.

It seems that Salon learnt their lesson. This time, they have ensured that the person talking about vaccines and autism is a _scientist_ as oppose to a crowd-pleasing politician.

Rahul Parikh has published a review of Paul Offit’s Autism’s False Prophets which differs so wildly from the RFK Jr debacle that its almost impossible to think of them being in the same publication.

I don’t want to do a review of a review as that would be bizarre and unnecessary but Parikh makes some key points that I want to address. The first one is the way the book starts.

Early in Dr. Paul A. Offit’s new book, “Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure,” he describes a threatening letter he received from a man in Seattle. “I will hang you by you neck until you are dead!” it read. The FBI deemed the threat credible, assigning Offit a protective officer who, for the next few months, followed him “to and from lunch, a gun hanging at his side.” He then recalls a suspicious phone call from a man who recited the names of Offit’s two children and where they went to school: “His implication was clear. He knew where my children went to school. The he hung up.” These days, the hospital he works in regularly screens his mail for suspicious packages.

Such stories usually come from pro-choice physicians on the front lines of the abortion debate. But Offit is no obstetrician. Rather, he is a baby doctor — the chief of pediatric infectious diseases at the Children’s Hospital of Philadelphia. The threats against him and his family have come not from antiabortion advocates, but rather from anti-vaccine crusaders who believe that vaccines cause autism. Offit, it turns out, has been targeted by them because he helped to develop a vaccine that prevents rotavirus, a serious gastrointestinal infection in children, and because he has been staunchly pro-vaccine in a time when there are many doubts about their safety.

It is amazing that we should be in a situation where a doctor who is actively saving lives is being targeted for that very fact. What is even more amazing is the fact that the very antivaxers who hate Offit so much simply don’t believe he _is_ being targeted. A few comments from Lisa Jo Rudy’s piece on Offit’s book illustrate this perfectly:

It’s very hard to judge the seriousness claims like Offit’s….

Mark Blaxill, Safe Minds.

I have heard Dr. Offitt make his claims of threats, etc. on more than one occasion. But I have never seen any real evidence of those alleged threats.

Wade Rankin, autism/antivax blogger

I would suggest that a reference to the possibility that some agency or company would harm one’s children in the future could be construed and repeated as a “threat” to one’s children if that threat would help to garner sympathy and label an opposing side as nuts.

Mike B

An amazing reaction. They genuinely hate Paul Offit so much that they think he is making up threats made to his children. And they think he’s doing it to ‘garner sympathy and label an opposing side as nuts’. This is the type of denial and refusal to see their own shortcomings that has led to the sorry state of autism/vaccine science in the first place.

Parikh also documents the reality of the science today and the reality of how the wider world views the autism/anti-vaccine community.

Despite what Wakefield claimed in his paper, his hospital’s ethics committee never approved his experiments to put children to sleep under general anesthesia, do spinal taps on them, take biopsies of their intestines (one of the children was hospitalized after his colon perforated in several places) and take volumes of blood from their veins. Deer also discovered serious conflicts of interest: Wakefield’s research was secretly bankrolled by a personal injury lawyer whose clients were suing MMR makers. Wakefield himself was given close to a million dollars to prove that the MMR caused autism. He had filed a patent for a new MMR vaccine at the same time he was doing his research. Upon learning this, Lancet retracted his paper, and he was charged with professional misconduct in 2005. If he is found guilty of misconduct, he will never practice medicine in the U.K. again.

The people in the autism/anti-vaccine community see Wakefield as a persecuted hero. Everyone else in the entire world who takes an interest in the matter sees him as a weak man who tried to game people – and did. Possibly he still is.

This level of disconnect between what those in the autism/antivax community see as the reality and the _actual_ reality is sometimes shocking. Even for me who has been in the front line of this debate for five years now, some of the things I read about and see from these people make my jaw drop.

I blogged about an example of this not long ago when Safe Minds Board Member Heidi Roger stated that Polio could be preferable to autism – and even that death could be better than autism.

This is a sadly far from uncommon opinion amongst a certain type of autism/antivax believer. To sum up their personality type would, I think, bring a sizeable minority of them very close to Munchausen syndrome by proxy/ Fabricated or induced illness , the indications of which seem very familiar to me from reading the Yahoo groups over the last few years:

* A child who has one or more medical problems that do not respond to treatment or that follow an unusual course that is persistent, puzzling and unexplained.
* Physical or laboratory findings that are highly unusual, discrepant with history, or physically or clinically impossible.
* A parent who appears to be medically knowledgeable and/or fascinated with medical details and hospital gossip, appears to enjoy the hospital environment, and expresses interest in the details of other patients’ problems.
* A highly attentive parent who is reluctant to leave their child’s side and who themselves seem to require constant attention.
* A parent who appears to be unusually calm in the face of serious difficulties in their child’s medical course while being highly supportive and encouraging of the physician, or one who is angry, devalues staff, and demands further intervention, more procedures, second opinions, and transfers to other, more sophisticated, facilities.
* The suspected parent may work in the health care field themselves or profess interest in a health-related job.
* The signs and symptoms of a child’s illness do not occur in the parent’s absence (hospitalization and careful monitoring may be necessary to establish this causal relationship).
* A family history of similar or unexplained illness or death in a sibling.
* A parent with symptoms similar to their child’s own medical problems or an illness history that itself is puzzling and unusual.
* A suspected emotionally distant relationship between parents; the spouse often fails to visit the patient and has little contact with physicians even when the child is hospitalized with serious illness.
* A parent who reports dramatic, negative events, such as house fires, burglaries, or car accidents, that affect them and their family while their child is undergoing treatment.
* A parent who seems to have an insatiable need for adulation or who makes self-serving efforts for public acknowledgment of their abilities.

I might catch some flak for making this comparison but whilst I am not suggesting that everyone autism/antivax adherent is MSbP or FII, I do think – as I say – a sizeable minority are. In the list above I have emboldened the characteristics I personally have seen lots of evidence of.

At any rate, whether there is genuine evidence of MSbP or FII or not, there is definitely an ongoing unreality to a certain group of peoples lives with autism. Why? To pretend to themselves they have total control over something that they do not understand? To medicalise something in order to keep alive the hope of a medical cure? To fuel their pre-existing lust for conspiracy theories? All of the above? None? Something else?

It gets to a point when it starts to not matter. When autistic children are literally being experimented on with absolutely no control in place like they are being with chelation, like they are being with Lupron and like they now are being with OSR we have to do something. When children in the UK are dying of vaccine preventable disease and children in the US are being hospitalised then we need to do something.

Paul Offit did something.

Age of Autism on chelation cancellation

18 Sep

I posted yesterday on the cancellation of the NIH study that was going to be examining chelation’s efficacy as an autism treatment.

What I said was that it was a good idea and it is. The simple facts are that autistic children are not toxic. The only labs that consistently find autistic children to be toxic are the labs Dr Jeffrey Brent identified as ‘these ‘doctor’s data’ type of laboratories’. In fact, its probably worth repeating his testimony about these labs:

Q: Dr Mumper discussed today some key aspects of chelation therapy….as a medical toxicologist do you see any reason for the chelation to remove mercury from either Jordan King or William Mead in these cases?

A: Absolutely not….there is no test in medicine that is more valid for for assessing mercury toxicity than an unprovoked urine mercury concentration. [For Jordan King and William Mead]…their unprovoked urine concentration is exactly in the normal range.

On the other hand, they have been chelated. And the justification for that chelation with regard to mercury comes from what you see in the right hand column where in both cases, 4 out of 5 provoked examples have been…uh…increase urine mercury. Well, you’re supposed to have increased urine mercury with provoked examples! Therefore there is absolutely no indication based here or anywhere else I saw in the medical records that suggest that there is any mercury effect in these children and therefore that was absolutely no reason to chelate them for any mercury related reason.

The standard way of chelating autistic kids is to do a provoked challenge test. As Dr Brent says – you’re supposed to have increased levels with provoked examples.

Q: There’s nothing here that would be out of the ordinary – from your experience – absent, even in the absence of a standard reference range.

A: Well, in truth we don’t (?) urine/leads because the ‘gold test’ is blood/lead so I haven’t looked at many urine/leads in children that I have chelated. So I can’t speak to that in my experience. But I have seen a number of patients now come to me because of these ‘doctor’s data’ type of laboratories which are based on urines – chelated urines – and they always have high leads in their chelated urines and I tell them ‘well, lets just do the gold standard test, lets get a blood/lead level and so far, 100% of the time they’ve been normal.

To sum up, the labs that consistently find a need to chelate autistic kids use the wrong sort of tests. When expert Toxicologists such as Brent do the proper ‘gold standard’ testing, the results are normal 100% of the time.

Its as simple as pie. You use the wrong test, you’re going to get the wrong results.

And yet, over on the Age of Autism website, they’re getting very angry about this cancellation. The angry opening paragraph to a recent post highlights the lack of logic in their stance:

So who canned the NIMH chelation study as “too dangerous?” Children are given huge doses of chemotherapy and radiation in a desperate effort to save them from cancer – fully knowing the side effects themselves can be deadly. It’s a fair risk most parents are willing to take to help a sick child.

Chemo is a standard treatment for cancer. It is medically indicated. Chelation is not a standard treatment for autism. It is not medically indicated. The reason it is not medically indicated is because there is no evidence metals are linked with autism.

There is a chain of logic that must be followed. If you want a type of treatment to be assessed for its efficacy, then your first step is surely to establish that there is a medical necessity for that treatment. If there isn’t then what you are doing is inflicting a completely unnecessary procedure on a child. In this case, a procedure that has been known to cause lasting brain injury in animals (rats).

The comments on AoA go from the bizarre:

So, why do I sense Pauly PrOffit’s grubby, greedy little fingers on this? This smells like something that he would do

To the paranoid:

THIS HAS BULLSH*T WRITTEN ALL OVER IT!!!

To the conspiracy-esque:

Notice the studies they WON’T do:
Studies on the effects of chelation.
Studies comparing unvaxed and vaxed children for autism.
Studies to find the misdiagnosed adults with autism to prove there’s been no increase.

When is everyone going to wake up to what’s happening?

NB – a study to find adults in Scotland is being planned if I recall correctly.

No-one considers the most likely reason for this cancellation:

a) There is no evidence metals cause autism
b) There is evidence chelation can cause injury
c) There is therefore what any rational person would see as an unacceptable amount of risk to children.

And of course we have the usual ‘my child recovered’ stories. Why do these stories never seem to get written up as case studies I wonder? We’re told there are thousands of them – where? Where in the medical literature are they? Apparently there are lots of rogue paediatricians who believe the antivaxxers so why aren’t they doing case studies on the multitudes of autistic children who are now totally recovered?

Personally I think that is what has bullshit written all over it.

Chelation study 'called off'

17 Sep

CHICAGO – A government agency has dropped plans to test a controversial treatment for autism that critics had called an unethical experiment on children.

The National Institute of Mental Health said in a statement Wednesday that the study of chelation (kee-LAY’-shun) has been discontinued. The statement says the agency decided the money would be better used testing other potential therapies for autism and related disorders.

The study had been on hold because of safety concerns . A study published last year linked a chemical used in the treatment to lasting brain problems in rats.

The treatment removes heavy metals from the body and is based on the fringe theory that mercury in vaccines triggers autism — a theory never proved and rejected by mainstream science.

Yahoo News

Back in June, I blogged about the possibility of the delayed chelation study being released. It had been delayed due to the same ethical concerns that now seem to have scuppered it. I can only view this development with relief. As I said at the time:

Lets be clear. This study is being touted about for one reason and one reason only – to appease the anti-vaccine/autism groups. In the mainstream medical/scientific community (and notably in the toxicology community) it is well known that autistic kids aren’t toxic.

Click on the link above to see some quoted testimony from Dr Jeffery Brent, world renowned Toxicologist. His opinion on the need for chelation of autisitic children is thoroughly discussed. Basically, when you do the provoked, non-standard tests from labs that make a good living from charging for these tests, they come back positive. When experts like Dr Brent do the gold standard tests, 100% of the time they come back normal.

There is no reason to chelate autistic children.

Arthur Allen – vaccine skeptics vs your kids

11 Sep

Whilst, I’m not sure that the people Arthur is writing about are skeptics as I understand the term (having a scientifically valid basis for not accepting an argument or position), I know what he means. And he’s right that it is this group of people vs the health of people everywhere.

The sub-header is even more accurate ‘immune to reason’. One only has to take a look over at the recent rantings on a certain blog we all know about where the latest themes are:

1) Presidential candidate Barack Obama is now a big pharma shill because he told one of them: “I am not for selective vaccination, I believe that it will bring back deadly diseases, like polio.”.

2) The latest study in a long line of studies that show once more there is no link between MMR and autism is both flawed and exonerates one of their heroes.

3) Kathleen Seidel is wrong because….uh….well, no one knows why but she must be. Apparently.

Immune to reason indeed.

As Arthur points out, there is a great deal at stake:

…in the last trimester of her pregnancy, Helena Moran caught a cough that she couldn’t get rid of. She figured she’d picked up the germ—whatever it was—from one of her patients at a Boulder dentist’s office. But the real nightmare began after her daughter, Evelina, was born: The baby began to cough and cough, and then she’d curl up in a little ball and turn blue. At the emergency room, she was diagnosed with whooping cough. She spent the next five weeks in intensive care and suffered permanent lung damage.

Now, this isn’t *all* the fault of the so-called autism community, but as I’ve discussed before, I’m ashamed to say that a lot of it is.

….the movement got a huge boost from the controversy over the mercury-laden preservative thimerosal, which some theorized might be linked to autism. That link has been disproven—by, if nothing else, the fact that autism rates remained steady after pediatricians and public health authorities told manufacturers to stop making thimerosal-containing childhood vaccines in 1999. But the anti-vaccine movement has kept going, finding ever new reasons to distrust immunization.

The are a lot of zealots out there who have fed upon the autism community. A parent who might not believe vaccines case autism listens to horror stories and reads links sent to them from such places of quackery as whale.to who are nothing to do with the autism community but who market their own brand of ridiculousness (the owner of whale.to believes dolphins can manipulate gravity and has the pictures to prove it!) regarding vaccines and the autism parent greedily sucks it down.

Arthur discuss the practice of abusing ‘religious exemption’ by these people:

Right now, in many states, all it takes to get an exemption from vaccine requirements is signing a form. Some, including a group of doctors at Johns Hopkins University, have proposed making it harder—allowing a philosophical exemption only after parents demonstrate a good-faith effort to educate themselves.

But an article I read in yesterdays ‘Edmond Sun’ stated:

….a person “who has reached the age of majority and is mentally competent to do so may justifiably refuse immunizations for himself or herself, but may not impose this refusal on a child, who has no choice in the matter.” Courts have consistently upheld this principle.

That makes sense to me. Who would want to refuse such a simple thing that has no link of any kind to autism?

Arthur closes with the following:

But while questioning authority is healthy, facts are facts. If vaccines really were responsible for autism, it would be too much to ask parents to do the altruistic thing. But more than a dozen studies have failed to discover such a link—and not a single legitimate study has shown that one exists.

He’s spot on. All the celebs and all the money in the world cannot change that simple fact. We need to get past this. Those who believe autism is caused by vaccines need to put up or shut up. They are holding up progress on autism research and causing the health of our societies to suffer.

I urge readers to visit Arthur’s piece and read the comments. The first few demonstrate exactly the sort of mindset Arthur is talking about – the one’s who bring shame on the autism community. They truly are immune to reason.

The IOM and "completely expressed concerns"

11 Sep

If you’ve read my previous posts Dr. Bernadine Healy, you know I have some pretty serious concerns about how she represented the way the Institute of Medicine operated when they produced their report on Vaccines and Autism.  Those statements were made in interviews with Sharyl Attkisson.  Again, if you’ve been reading, you realize that Ms. Attkisson’s methods were a cause of concern for me as well.  I have voiced these concerns with CBS news via fax.

Dr. Healy made some pretty bold assertions, and Ms. Attkisson failed to even attempt to follow up on them.

The prime example is when Dr. Healy proposed that

…“There is a completely expressed concern that they don’t want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people. “First of all,” Healy said, “I think the public’s smarter than that. The public values vaccines. But more importantly, I don’t think you should ever turn your back on any scientific hypothesis because you’re afraid of what it might show.”

I’ve noted before, that a statement of that magnitude, calling into question the very methods and motives of the IOM deserved followup by Ms. Attkisson.  When someone makes a claim that an organization we all depend on to be independent and unbiased may have acted improperly, and unbiased reporter should make sure of the facts by checking with the real source before going ahead with the story.

Well, bloggers sometimes do the work that reporters fail to do.  In this case, AutismLibrary asked the IOM for comment on some of the way the IOM and its process in handling the 2004 Vaccines and Autism report have been portrayed.  Below (with permission) is the response that AutismLibrary received and blogged:

Thank you for your recent and very thoughtful message. As you know, the IOM’s Immunization Safety Review Committee most certainly did not suggest that scientific inquiry into the role of vaccines in autism should cease because the results could affect public perception of the value of childhood vaccinations. The public deserves better than that.

The committee’s 2004 report, Vaccines and Autism, states:

Determining causality with population-based methods such as epidemiological analyses requires either a well-defined at-risk population or a large effect in the general population. Absent biomarkers, well-defined risk factors, or large effect sizes, the committee cannot rule out, based on the epidemiological evidence, the possibility that vaccines contribute to autism in some small subset or very unusual circumstances. However, there is currently no evidence to support this hypothesis either.

After a paragraph in which the report follows that sentence with a discussion of the sparse literature regarding subsets of autism and the theoretical possibility of a vaccine-susceptible subpopulation, the report states:

While the committee strongly supports targeted research that focuses on better understanding the disease of autism, from a public health perspective the committee does not consider a significant investment in studies of the theoretical vaccine-autism connection to be useful at this time. The nature of the debate about vaccine safety now includes a theory that genetic susceptibility makes vaccinations risky for some people, which calls into question the appropriateness of a public health, or universal, vaccination strategy. However the benefits of vaccination are proven and the hypothesis of susceptible populations is presently speculative. Using an unsubstantiated hypothesis to question the safety of vaccination and the ethical behavior of those governmental agencies and scientists who advocate for vaccination could lead to widespread rejection of vaccines and inevitable increases in incidence of serious infectious diseases like measles, whooping cough, and Hib bacterial meningitis.

The committee urges that research on autism focus more broadly on the disorder’s causes and treatments for it. Thus, the committee recommends a public health response that fully supports an array of vaccine safety activities. In addition the committee recommends that available funding for autism research be channeled to the most promising areas.

Some readers have apparently failed to appreciate the full meaning and intent of the committee’s carefully written text. The report, as supported by the above-quoted paragraphs, clearly acknowledges the possibility that new information in support of hypotheses about susceptible subpopulations could emerge, at which time significant new research efforts might be appropriate. Whether the recent information about mitochondrial dysfunction will be the foundation for a major new research direction remains to be seen. The committee’s comment on the untoward consequences of discouraging vaccination was offered as an elaboration of their concerns about the unsubstantiated vaccine-autism hypothesis and not as support for their recommendations about an appropriate research agenda for understanding autism.

The scientists and clinicians on this committee evaluated the then-available scientific data in an unbiased manner. They reached their conclusions based on where the evidence led them. This principle—making recommendations only if supported by the evidence—guides all studies that IOM undertakes. I reiterate that the committee most certainly did not urge caution about pursuing the vaccine-autism connection in order to avoid frightening the public away from immunizations. The IOM stands ready to re-examine this issue should sufficient and relevant evidence emerge.

I almost put the entire last paragraph in bold for emphasis. Instead I’ll pull two lines out:

I reiterate that the committee most certainly did not urge caution about pursuing the vaccine-autism connection in order to avoid frightening the public away from immunizations

and

The IOM stands ready to re-examine this issue should sufficient and relevant evidence emerge

I read this as: there were no “completely expressed concerns” that affected the IOM’s study and that although they recommended rejecting the vaccine/autism hypotheses (thimerosal and MMR), they haven’t “turned their backs” on the subject. Should good research come forward (as with any subject in science) they will look again.

I do have one simple question: Shouldn’t Sharyl Attkisson approached the IOM for comment before going forward with this story?

Another fax for Ms. Couric

9 Sep

Note: I didn’t do my homework–Ms. Attkisson has discussed the Hornig paper. She manages to do exactly what we would expect: toe the ThoughtfulHouse line. The blog piece by Ms. Attkisson was posted while I was finishing my fax, given the time stamp.

As you will read below, I didn’t find Sharyl Attkisson’s recent blog post to be what I expected. OK, I wasn’t expecting her to be convinced by the recent study by Hornig et al., (paper here) but I at least expected her to comment on it. Instead, she dodged the issue completely. Worse yet, her post boils down to (a) assuming that the government doesn’t do vaccine safety research then (b) apparently implying that she and Dr. Bernadine Healy are somehow responsible for a “new” effort by the government to study vaccine safety.

So, CBS news has two new pages in their fax machine (to go along with a previous fax). In an effort to save their staffers the time of forwarding the fax, I quote it below.

September 8, 2008

Katie Couric, Managing Editor
CBS Television Network
524 West 57th Street
6th Floor
New York, NY 10019-2902

VIA FACSIMILE

Dear Ms. Couric,

I have faxed you recently about my concerns with the reporting of Ms. Attkisson. I would love to be writing you now with word that things have improved. But, sadly, they have not.

Ms. Attkisson appears to have avoided the key story of the week (if not month) in vaccines and autism: the study by Hornig et al. which shows (again) a lack of a link between autism and the MMR vaccine. Instead, Ms. Attkisson ran a blog piece that perpetuates the myth that vaccine safety is not a high priority for the nation’s health researchers.

Hornig et al. is precisely the sort of study that Dr. Bernadine Healy (in an interview by Ms. Attkisson) claimed the research establishment was “afraid” to perform: a study looking not at large populations, but specifically at children with autism. In this paper, the study group critera were very narrow: children with autism who regressed and have significant GI problems. The study sought to answer questions raised by Dr. Wakefield’s flawed study, which has caused much distress in the autism community for 10 years. The study found that MMR is not linked to autism: a conclusion accepted by autism advocate Rick Rollens, one of the most vocal spokespeople for the autism/vaccine link.

You can imagine that, yes, I expected Ms. Attkisson to address this study in her blog or reporting. Instead I read with dismay her blog piece on September 4th, “Vaccine Watch”. In her introduction, she references her interviews with Dr. Healy, but avoids the issue of the Hornig MMR study. Instead, she discusses recent NIH grant solicitations in the area of vaccine safety, and presents them as though vaccine safety research is something new. As noted above, this perpetuates the myth that vaccine safety is not being studied.

In addition to the Hornig et al. study, there is another study soon to be released on autism and thimerosal containing vaccines. Again, a targeted study looking at the exact population of interest. I would hope that this one doesn’t escape Ms. Attkisson’s attention. Also, one need look no further than clinicaltrials.gov to find ongoing studies on vaccine safety and adverse events. It is difficult to find a way that will not appear sarcastic to point out that the CDC’s Vaccine Safety Office is a very clear example of the government’s ongoing commitment to tracking vaccine safety.

If you have any question of how important the Hornig study is in the autism community, take a look at the comments on Ms. Attkisson’s own blog post. You will find that, even though Ms. Attkisson avoided the study, the autism community considered the Hornig study to be the news of the week, not the NIH grant solicitations.

Accusations of media bias are often applied too quickly by readers who disagree with the stances taken on certain stories. However, in the case of Ms. Attkisson, I find it difficult to understand how she could avoid a story which not only was so important to the community, but also answered the precise questions she has posed in her previous reporting.

I appreciate your time in this matter, and will gladly clarify any statements above that may not be clear.

Sullivan
Autism Parent
LeftBrainRightBrain.co.uk
SullivansJourney@gmail.com

Strategic Plan: when should I be concerned?

5 Sep

No, I’m not asking “when should I be concerned about the Strategic Plan”. Instead, I am taking parts of the Plan and posting them here. The full Plan is 34 pages long. Don’t let that slow you down! It really isn’t that long, and I found it a good read. But, it is hard to discuss the whole thing as a blog post.

Another point I see–there are six sections.  It may be tough to sit down at one time and write a response to all six.  If you think that may keep you from commenting, follow these posts and comment as you go.  It sounds like they would prefer you to write one single email, but I am all for anything that gives them more feedback–especially feedback that encourages using a strong scientific approach to selecting research projects.

With apologies to the people who wrote the Strategic Plan, I am going to only post the sections on “Research Opportunities” and “Short Term Objectives” and “Long Term Objectives”.  Read them and ask, “Is this how I want research dollars and research time spent?”.  If so, send them email and show support for the parts you like.  If not, email them and let them know your concerns.

With that intro, for the section, “When Should I be Concerned”, we have:

Research Opportunities

• ASD screening instruments and approaches for use in community settings to identify individuals who require diagnostic evaluation.

• Sensitive and efficient clinical diagnostic tools for diagnosing ASD in widely diverse populations, including underrepresented racial and ethnic groups, females, younger and older age groups.

• ASD measures that are easy to administer and that are sensitive to incremental changes in both core and associated ASD symptoms. Such measures can be used to help track the clinical course of individuals with ASD, monitor responses to interventions, and provide information about the broader autism phenotype.

• Detailed criteria for specific ASD sub-types in order to better describe the variations in symptoms and severity and study how these variations relate to underlying pathology, intervention strategies, and outcomes.

• ASD subpopulations and associated biobehavioral markers that provide early indication of ASD risk and opportunities for early intervention.

• Protocols for genetic testing in routine clinical practice in order to identify individuals at risk for ASD. Identification of individuals with genetic variations associated with ASD will facilitate intensive studies of ASD subpopulations with shared genetic risk factors to characterize common phenotypic and biological features.


Short-Term Objectives

• Develop, with existing tools, at least one efficient diagnostic instrument (e.g., briefer, less time intensive) that is valid in diverse populations for use in large-scale studies by 2011.

• Validate and improve the sensitivity and specificity of existing screening tools for detecting ASD through studies of the following community populations that are diverse in terms of age, socio-economic status, race, ethnicity and level of functioning by 2012.
o School aged children
o General population (vs. clinical population)

Long-Term Objectives

• Validate a panel of biomarkers that separately, or in combination with behavioral measures, accurately identify, before age 2, one or more subtypes of children at risk for developing ASD by 2014.

• Develop five measures of behavioral and/or biological heterogeneity in children or adults with ASD, beyond variation in intellectual disability, that clearly relate to etiology and risk, treatment response and/or outcome by 2015.

• Identify and develop measures to assess at least three continuous dimensions of ASD symptoms and severity that can be used to assess response to intervention for individuals with ASD across the lifespan by 2016.

• Effectively disseminate at least one valid and efficient diagnostic instrument (e.g., briefer, less time intensive) in general clinical practice by 2016

Again, ask yourself, “Is this how I want research dollars and research time spent?”. If so, send them email and show support for the parts you like. If not, email them and let them know your concerns.

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