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Autism Minnesota Somali community see through anti-vaccine brigade

29 May

In November last year, David Kirby wrote a Huffington Post entry about the Minnesota Somali autism situation saying:

In fact, one of the most obvious “environmental” differences between Minnesota and Somalia is mass vaccination…

And of course, the Age of Autism site, made many proclamations about the Somali community and vaccines:

Somali parents, I offer this advice as the father of a son with autism. Like many of you, I watched my normal son descend into autism after receiving his vaccines. I genuinely believe too many vaccines given too soon in our children’s lives is the primary trigger for the autism epidemic

However it seems that maybe the Minnesotan Somali autism population have done their own reading and come to their own conclusions.

The Somali American Autism Foundation is a new-ish Foundation. The domain name was created in Feb 2009 for example. Pretty much in the middle of the period that the Age of Autism crew were waxing lyrical about standing shoulder to shoulder with their Somalian friends in the battle against vaccines.

One of the founders of the SAAF, Idil Abdull, has this to say:

When my son Abdullahi was first diagnosed with autism at age three, I felt angry, sad and confused because I have never heard of the word Autism before. I had no idea what to do next and how to help my son. A mother’s job is to help her child with whatever life throws at them, but when the doctor told me there is no known cause and cure for autism, I felt helpless and hopeless.

I remember crying for what seemed forever. After I realized to be thankful that god blessed me with a beautiful son, I saw the hope in him and the help he needed from his mother. I rolled up my sleeves and went to work by reading every autism book I could find and going online for any help to give my son the hope he and countless others need and deserve. I would not change a thing about my son Abdullahi. He is a happy and loving child and I thank god everyday for him. There is HELP and There is HOPE not just for my son but for all of our children.

Now thats a pretty fantastic, positive and…yep, neurodiverse, type of message don’t you think?

But there’s more.

The SAAF website carries a detailed explanation of what a vaccine is and how they were first started. It takes away a lot of the negative mystery and states:

There is a strong minority of people who believe that the increasing rates of autism and learning disabilities in the U.S. are related to its mandatory immunization program. There is still no credible evidence of a correlation between autism and vaccinations. This position is supported by the World Health Organization, the CDC, The AMA, and the American Academy of Pediatrics.

They then recommend that a parent talk to their physician. What simple, credible and good advice.

I’d like to welcome The SAAF to the growing community of autism organisations that are clearly fed up with a constant preoccupation with a disproven hypothesis. Maybe it would be a good idea for SAAF and the newly created Autism Science Foundation to talk together.

Circling the Wagons

29 May

The alternative medicine community is certainly loyal to their own. This seems especially true in the world of Autism where no idea is ever abandoned, no practitioner ever criticized.

After the Chicago Tribune published articles on the Geiers (and here), as well as Dr. Mayer Eisenstein, it was a forgone conclusion that the community would close ranks.

These articles were published right before the AutismOne conference–which chose to honor Andrew Wakefield after news was released that he may have altered his data. See what I mean? No quicker way to be a hero than to have really the skeletons in your closet made public.

The most basic response was from Kim Stagliano, who let this tweet on Twitter:

From Kim: Chicago Trib is close to dead. Suddenly launches full frontal attack on autism during Autism One. AAP in backyard. They hear us.

Yes, the Tribune is bad and in the pockets of the AAP and the AAP are evil. Please.

Dan Olmsted came out rather quickly with a piece in the Age of Autism blog in defense of the Geiers and Dr. Eisenstein. Later, Anne Dachel did another piece.

Both use a simple contrivance: avoid the real questions raised by the article. Instead, write about “what the Tribune story should have included”. This is especially true of Anne Dachel, who went on and on over pretty much all the media talking points of the vaccines-cause-autism movement.

For example, both Mr. Olmsted and Ms. Dachel thought the Tribune should have discussed Dr. Bernadine Healy. The connection to the story? None. But, Dr. Healy is vitally important to the story Olmsted and Dachel want to tell. See what I mean?

Dan Olmsted’s method sidestepping of the real questions was rather poorly done. In his piece, he writes:

The article lumps Lupron — about which I know nothing, and have no opinion — in with alternative approaches like diet, about which I do know something, and do have an opinion.

Frankly, I found this a ridiculous statement. Dan Olmsted was attending the AutismOne conference–a conference which for years has hosted talks by Mark Geier on Lupron and which Dan Olmsted has attended for years. I guess he missed the Geier talks?

It isn’t as though Mr. Olmsted isn’t able to form an opinion on scant data. Mr. Olmsted has shown a particular interest in Kathleen Seidel–to the point where Mr. Olmsted “diagnosed” her kid with mercury poisoning based on a paragraph in the book Autism’s False Prophets. From only a snippet (wrongly interpreted by Mr. Olmsted) about one of Ms. Seidel’s previous jobs, Mr. Olmsted claimed that she had high levels of mercury, and further stated:

Laugh me off if you want, but I have spent a lot of time looking for plausible links between parents’ occupations and autism in their children, and I know them when I see them.

So, he’s willing to go out on a limb based on a few words in a book, but, say, the page after page that Ms. Seidel wrote about the Geiers and Lupron (e.g. here, here and here) left no impression?

Sorry, Mr. Olmsted. I know ’em when I see ’em too. I see you dodging really tough questions about the Geiers in an effort to protect one of the big names in autism psuedoscience.

To further point out how silly the “about which I know nothing, and have no opinion”, one of the readers of that blog piece pointed out:

Dan, last year AoA published a post from Kent Heckenlively entitled “MERCURY, TESTOSTERONE AND AUTISM – A REALLY BIG IDEA!” In the comments, you said that you had gone to the Geiers’ house and witnessed a child receive a Lupron injection and improve immediately. You “just had to put this on the record,” you said.

I take the fact that Mr. Olmsted has gone from Lupron shill to even this weak distancing himself from Lupron (“I know nothing”) as a good sign. Even Dan Olmsted must be seeing the cracks in the Lupron Logic.

Ms. Dachel does her own “two step” around the question of her real opinion on Lupron.

Let me say that I’m not an expert on any of the medical aspects of this; I’m merely an observer. So here’s what I’m seeing.

Since when does not being an expert on the medical aspects stopped anyone at the Age of Autism blog from making very clear opinionated statements?

But, again, I take the clear signal that she is willing to distance herself from Lupron as a small, but positive sign.

So, let me use their contrivance–let me list what Mr. Olmsted and Ms. Dachel should have written about in their blog pieces. Let me list many of the real questions raised by the articles in the Tribune. As you read this list, it will become obvious why the Olmsted/Dachel tag-team avoided these questions: these are serious questions about people possibly harming children with autism and Dan Olmsted and Anne Dachel don’t have answers to these questions.

At least, they don’t have answers which would satisfy their readership.

Here is the list of questions I had after reading the Tribune articles:

1) Are parents still being sold the idea that Lupron will help remove mercury from their autistic children?

2) Are parents still being told that mercury causes autism? (OK, we all know the answer to that one. The answer is yes. No amount of data will convince Mr. Olmsted.)

3) Are the diagnoses of “precocious puberty” valid? Would a real pediatric endocrinologist agree with the Geier’s assessments? From the Tribune, quoting an actual expert in precocious puberty:

None of the data verify or even suggest that any of these patients have precocious puberty.

4) What is the purpose of all the extra lab tests the Geiers are performing? Are they for the Geiers’ research? If so, why should the parents (or their insurance) foot the bill?

5) Why do the Geiers use 10 times the normal dosage of Lupron?

5) Is Lupron being used as a chemical restraint?

6) Does Lupron even work well enough to warrant its use? Given that Dr. Eisenstein is reported to be close to dropping Lupron, it clearly isn’t a “miracle drug”.

7) what are the side effects of extended use of Lupron. Especially, what are the side effects of wrongly delaying puberty? According to the Tribune story:

Experts in childhood hormones warn that Lupron can disrupt normal development, interfering with natural puberty and potentially putting children’s hearts and bones at risk.

8) Why don’t the Geiers recommend patients to see board certified pediatric endocrinologists?

9) If precocious puberty is so prevalent amongst children with autism, why don’t pediatric endocrinologists see it? According to the Geiers:

Mark Geier responded that these are “opinions by people who don’t know what they are talking about,” saying the pediatric endocrinologists interviewed by the Tribune don’t treat autistic children and have not tried the Lupron treatment.

10) What about older kids the Geiers are treating? Are they being correctly diagnosed? From the Tribune story:

David Geier said his father diagnoses high-testosterone teens not with precocious puberty, but with another very rare condition: testicular hyperfunction.

How does “testicular hyperfunction” explain the older girls the Geiers have treated?

11) The effects of Lupron on sex hormones are temporary. Stop the shots, the hormones return. The loss of the beneficial effects of puberty are permanent. Does the trade off make sense?

And that is just the list of questions based on the article on the Geiers. Then there is the story about Dr. Eisenstein. This too raises a number of tricky questions.

1) Is Dr. Eisenstein a credible resource for information? After reading the article, one has to question that.

2) Would people like Anne Dachel, Kim Stagliano and Dan Olmsted recommend people see a physician whose malpractice insurance may be “phony”?

In court records dating back three decades, the families of dead and brain-damaged children repeatedly alleged that doctors who work for Eisenstein made harmful mistakes — sometimes the same error more than once. His practice also has been dogged by accusations in court records that its offshore malpractice policy was phony.

3) Would Is Dr. Eisenstein’s record of selling “illegal” health insurance troublesome?

He also dabbled in group health plan sales to Illinois families but tangled with state insurance regulators in the mid- to late 1990s. Regulators warned consumers in a newsletter that Eisenstein “continued to illegally market” the Homefirst Health Plan, based in the British Virgin Islands, even after they told him the plan was ineligible. Despite this, he continued selling the plan, records show, and they ordered him to “cease and desist.”

4) Dr. Eisenstein seems to be good at blameshifting. In this case he accuses the parents of making a mistake that appears to be clearly that of his colleague at HomeFirst. Is this the sort of doctor parents of autistic kids should be seeing?

A Homefirst doctor took a sample of blood from Na’eem’s umbilical cord that could have been used to diagnose the problem and could have led to prompt treatment, according to court testimony. But instead of dropping off the sample at the lab, the doctor said under oath, he was tired, went home and put the sample in his refrigerator, where it sat the whole weekend.

In an interview, Eisenstein blamed the parents for not taking the baby to the emergency room for a blood test. Na’eem’s parents testified that no one from Homefirst ever told them to go to the emergency room.

5) Dr. Eisenstein appears to make some rather questionable decisions about insuring his own practice. Also, it appears from this quote that perhaps he has gone without malpractice insurance. Again, is this the sort of doctor parents of autistic children should be using?

After Nathan Howey’s death, Weiss Hospital sued Homefirst, Rosi and Eisenstein for fraud, alleging they misrepresented their Caribbean-based malpractice policy. Eisenstein testified that he was in St. Kitts helping one of his daughters, a veterinary student there, buy a condo when the lawyer who helped arrange the sale told Eisenstein he also sold malpractice insurance.

“I was tickled pink to get insurance,” he said under oath.

A Cook County judge called it an “improperly underwritten insurance plan.” Eisenstein, who says the policy is legitimate, agreed to pay Weiss $50,000 after mediation.

6) Dr. Eisenstein appears to have inflated his credentials:

Eisenstein said under oath that he was a faculty member at the Hinsdale Hospital Family Practice Residency Program from 1992 to 2003. A hospital administrator testified that Eisenstein “never was” a faculty member. In a recent interview, Eisenstein said that while he wasn’t a faculty member there, he did teach students from that program and kept snapshots of them.

(anyone else reminded of Vera Byers, witness for the petitioners in the Omnibus, who claimed to be faculty at UCSF? In reality, she used the library and attended parties there.)

7) Lastly, is this the type of doctor we should be taking our kids to?

Reflecting on the $1.275 million malpractice settlement, he appeared unshaken.

“It’s the cost,” he said, “of doing business.”

I’m sure the parents were glad to hear that their kid’s life was “the cost of doing business”.

There are a lot of questions raised by these stories. Hard questions. Questions Mr. Olmsted, Ms. Dachel and Ms. Stagliano should answer if they want to really serve their readership.

Autism Science Foundation are blogging

28 May

Just a quickie. Autism Science Foundation are now blogging. So far there’s only one post up but already our very own Sullivan has got in there to comment. I’d love to see some autie opinion making a splash on there!

ASF also have their own Facebook Group for those who like to get their social media on. Oh yeah, lets not forget the website whilst I’m giving out link love.

Bravo Huffington Post

28 May

Yep, you read correctly. I’m not even sarcastic.

Guess who the new Huffington Post blogger is? Ari Ne’eman of the Autistic Self Advocacy Network.

Ari’s first post is a good one, Health Care Reform and the Disability Community. Ari has done an excellent job of keeping focus on the real issues facing the disability community in general and the autism community in specific. Ari recognizes that we in the autism community are a part of a greater whole–the disability community.

Ari’s post is quite thorough, quite well thought out. He is factual and logical.

Take a moment and leave a comment–let him (and the Huffington Post) know how much we appreciate him fighting for our communities.

Why Generation Rescue shouldn’t be on the IACC

27 May

I have been very critical of the lobbying efforts of Generation Rescue. I have found their actions to be far from helpful in the struggle to obtain quality research for people with autism. One issue I haven’t covered is the fact that Generation Rescue has been lobbying hard for a seat on the Interagency Autism Coordinating Committee (IACC).

The IACC, as you might guess, coordinates research efforts amongst various government agencies. They do this by creating a “strategic plan” which puts forth initiatives that should be funded. For example, one “short term goal” listed on the Strategic Plan is:

Launch at least two studies to assess and characterize variation in adults living with ASD (e.g., social and daily functioning, demographic, medical and legal status) by 2011. IACC Recommended Budget: $5,000,000 over 3 years.

We need a lot more research like that if we are to serve our existing adult population and prepare for the kids of today to transition into adulthood.

This sort of research, oddly enough, isn’t supported by many of the autism advocacy organizations. Instead, they see the IACC as a pathway to their singular goal: recognition of the supposed link between vaccines and autism.

The fact of the matter is simple–Generation Rescue should not hold a seat on the IACC. The reasons are simple, and are below:

1) Generation Rescue’s position is already represented on the IACC.

I have never heard any complaints from the Generation Rescue team about Lyn Redwood. Lyn Redwood represents, quite vocally mind you, the “autism is caused by vaccines” segment of the community. She pretty much dominates much of the discussion, steering it towards vaccines as much as possible.

Ms. Redwood is ably assisted in steering all discussions towards vaccines in one of the working groups by Mark Blaxill. Again, I have never heard anyone from Generation Rescue say, “Dang, that Mark Blaxill just doesn’t get our point of view!”

So, if the Generation Rescue position is already represented, why give GR an official position?

2) Just because there are multiple organizations, doesn’t mean that the IACC has to include them all.

Besides their position on vaccines, what do Generation Rescue, Safe Minds, TACA and the National Autism Association have in common?

You can’t join them and vote for their leadership.

I just see these as different faces to the same overall autism group. Actually, I see them as mostly vaccine oriented advocacy groups, not autism advocacy groups, but the point is the same: why give each of these groups their own seat on the IACC.

Think for a moment—why should a few people be allowed to create an “organization” and ask for separate representation? If each subgroup wants to have control over their own budgets and give each member big titles, that’s just fine. But, when it comes to representation on a government body, why should every faction of what is, really, one big vaccines-cause-autism group be given a seat at the table?

Yes, this is much like item (1)—all of these groups already have their opinions represented by Lyn Redwood. There is no need or value in giving them more seats on the IACC.

3) This would lead to even more wasted time.

The IACC is a group that has very limited time to work on a research plan. Work being the operative word. Already, a LOT of time is taken up carefully crafting each and every phrase that might give credence to the vaccines-cause-autism story.

Imagine now if even more time were taken up in these discussions. Please, no. There is a great deal of expertise represented by the scientists on the IACC. We as taxpayers and as members of the greater autism community deserve to benefit from their expertise. We don’t need to hear twice as much (or more) vaccine-oriented discussions.

4) Generation Rescue has clearly demonstrated itself to be anti-science.

Generation Rescue’s recent “study” on vaccines and health outcomes around the world was, in a word, dishonest. The fact that they would promote such a manipulation of facts should disqualify them from sitting on a research based committee.

They either don’t understand research, or they are willing to misuse “research” to promote a political agenda. Either way, I don’t see why good researchers in the field should have to share a committee with Generation Rescue. Moreover, I really don’t see how Generation Rescue can lead the way in directing autism research given their demonstrated lack of understanding of the principles of research.

5) They don’t want their voice heard, they want to be able to outvote the scientists.

As noted above, Generation Rescue’s positions are very clearly communicated on the IACC already by Ms. Redwood. What Generation Rescue wants is a large enough voting block to outvote the scientists on the committee.

Read that again—they want to outvote scientists on a committee designed to coordinate research.

Sorry, you don’t vote down science.

And, once again, why should all the different heads of the same beast (TACA/Generation Rescue/SafeMinds/NAA) be treated as separate entities?

6) They are rude.

The culture of Generation Rescue is not one of working as a team with others. You either agree with their position, or people shout “BullShit” loudly at you.

Yes, there is already rude behavior on the IACC. Mark Blaxill, for one, has spent considerable amounts of time calling anyone who disagrees with his untenable position on mercury “Epidemic Denialists”. We don’t need more of that, and Generation Rescue goes well past that level on the impoliteness scale.

Sorry, I just can’t find any advantage to having Generation Rescue represented on the IACC. I can see a LOT of disadvantages, though

What do corrupt politicians tell us about autism policies in the UK?

26 May

One strand of thinking in those who promote the autism-MMR vaccine hoax in the UK is that the political system is corrupt. At the worst level this leads to conspiratorial thinking, as in this statement from an Independent leader from February 24th 2004:

Are we wrong to detect the distant whirr of the same spin spin machine that so recently set about destroying the reputations of David Kelly, Andrew Gilligan and others?

John Stone, an active JABS (the UK’s leading anti-vaccine site) activist who now writes for Age of Autism, recently posted a call to arms by Alison Edwards on the MPs’ expenses controversy. Her post reminds us that much of the controversy about MMR vaccine is possibly displacement activity after struggles to obtain help and support. After a go at MPs’ expenses, she draws her inspiration from her son.

My son is my inspiration, he has no idea of the anger I harbour at what I have been forced to endure since the day his MMR left him unable to control his bowels. Not to mention the other battles for services and therapies, the list of refusals is a familiar one to anyone caring for an autistic or disabled child. All we can do it watch as our young morph into adults before our eyes. Yet our claims to assist the most vulnerable with their most basic needs, go unheard.

WE, THE PEOPLE, DEMAND THE DISSOLUTION OF PARLIAMENT.

Being angry about MPs expenses is a reasonable position, but there are many other issues others have been fighting for, and they should feel equally aggrieved. Think of any lobby group, and you can probably come up with a reasonable view that more attention should have been paid to it, than were paid to the acquisition of LCD TVs, the cleaning of moats, and other such pathetic squandering of taxpayers’ money.

The corruption is spread throughout the parties, and throughout MPs of all views within them. For example, Julie Kirkbride is a UK MP who has expressed views on MMR vaccine, to the detriment of an autism campaign launch; a microcosm of the general effect the MMR-vaccine-autism hoax has had on autism awareness in the UK:

she had chosen the same day to hold her own conference at Westminster to highlight alleged links between autism and the controversial MMR vaccine.

“I am furious that a conference that could have been held yesterday or could have been held tomorrow is being held on the day that we are actually trying to focus, for once, on the needs of autistic people instead of this debate over MMR,” he told BBC Radio 4’s Today programme.

“This is the first major conference of autism awareness year. It has been organised for months. To detract attention from it today of all days is, I think, pretty silly.”

Julie Kirkbride is now under intense pressure over expenses. Does this have any bearing on her position on MMR vaccine? Not all all.

The expenses saga may remind us of the sense of entitlement of UK MPs and their failure to police their own behaviour, but it tells us nothing about public policy on autism or vaccines.

Is lupron just a chemical restraint?

26 May

Since it was first proposed by Mark and David Geier, Lupron therapy for autism has been criticized heavily. Do a google search–if your results are like mine, the first hit is a blog post by Kathleen Seidel “Playing with Fire“. Ms. Seidel has done much to expose the questionable methods used by the Geiers to promote Lupron as a therapy for autism. Her list of Lupron links is quite valuable for anyone considering this therapy. Top amongst those is a blog post by Prometheus at the Photon in the Darkness blog, exposing the questionable science behind the supposed testosterone/mercury connection.

Lupron is a drug which shuts down sex hormone production in the body–temporarily. Because of the hormone reduction, lupron is used in the treatment of prostate cancer in men and fibroids in women. The only approved use for children is to treat “precocious puberty”–i.e. the onset of puberty too early. It is useful because it temporarily reduces hormone production.

But, that isn’t what the Geier’s proposed. They didn’t start out to treat precocious puberty. It is worth looking at the history to see how much the Geiers’ stories have changed. There appear to be three stories now.

Story one: mercury binds to testosterone making it difficult to chelate out of the brain. The science backing this up was ridiculous (unless you think your brain is a vat of boiling benzene). Seriously, I am embarrassed for the Geiers. Even in the world of alternative medicine, this was junk science.

Story two: autistic kids almost all have “precocious puberty”. Odd that no one else has ever seen this, but it gives a medical reason to prescribe Lupron (one that will pass insurance scrutiny).

But, both “story one” and “story two” seem to be in the past. Yes, there is mention of precocious puberty in the recent articles in the Chicago Tribune (‘Miracle drug’ called junk science). But, here is a paragraph worth reading:

By lowering testosterone, the Geiers said, the drug eliminates unwanted testosterone-related behaviors, such as aggression and masturbation. They recommend starting kids on Lupron as young as possible and say some may need the drug through the age of puberty and into adulthood.

Does that sound like (a) they are treating mercury poisoning or (b) they are treating precocious puberty?

Here is a quote from Anne Dachel’s rather weak defense of the Geiers:

One of the issues in the stories is the use of Lupron to treat aggression in autistic children who have high levels of testosterone. This is a huge controversy. The treatment is slammed as “unproven and potentially damaging” in the Tribune.

Does that sound like (a) they are treating mercury poisoning or (b) they are treating precocious puberty?

The Rev. Lisa Sykes, in the comments to the Tribune article wrote:

As the parent of the first child to be treated by Dr. Geier for high testosterone, a condition caused by cinically diagnosed mercury-poisoning from the theraputic use of vaccines and RhoD, I can only wait for the day the press gets it right.

Does that sound like (a) they are treating mercury poisoning or (b) they are treating precocious puberty?

Remember, this is the same Lisa Sykes whose video interview promoting Lupron talks about finding a way to get the mercury out. But, now it is “high testosterone”. Sure, she asserts (without any support) that this is caused by mercury poisoning. Anyone want to guess who “clinically diagnosed” the mercury poisoning, by the way? I know who my money is on.

Before I go too far off track, let’s bring this back to the big question–if the story is no longer “mercury poisoning” or “precocious puberty”, is Lupron being used for any other purpose than controling behavior through limiting testosterone levels? And, at 10 times the normal dosage used for precocious puberty, isn’t this a rather handed approach?

Lupron has been called a “chemical castration” drug due to the fact that it shuts down the body’s testostoerone production and has been used to control behavior in sexual predators. Lupron obviously will have profound effects on the behavior of people–children or adult, autistic or not.

If testosterone control is the real purpose for the “Lupron Protocol” (as the Geiers have named it) shouldn’t we then ask: isn’t this just a form of restraint?

Keep in mind, Lupron only works temporarily. Stop giving the Lupron shots and testosterone levels will rebound. Remember this quote from the Tribune story?

They [the Geiers] recommend starting kids on Lupron as young as possible and say some may need the drug through the age of puberty and into adulthood.

Anyone remember how the “mercury toxic” children idea was perpetuated? Since standard tests don’t show high levels of mercury, “challenge” chelation tests were used. When real toxicologists test children shown to be “mecury intoxicated” by alternative medical practitioners, the real answer is no mercury poisoning. Is the same pattern happening in the world of testosterone testing?

Let’s check the patent application the Geiers’ submitted. The first patient mentioned in the application is “child X”. Child X had serum testosterone levels of 25ng/dL. The reference range was 0-25ng/dL. In other words, the kid was within normal ranges.

How about the other patients? Child Y, for instance? Again, within normal ranges.

Child Y’s total serum testosterone was determined to be 20 ng/dL. The reference level of total serum testosterone for a male child of Child Y’s age at this laboratory was from 0-20 ng/dL.

“Child A” was slightly above normal ranges.

Laboratory analyses for androgen metabolites revealed an elevated serum total testosterone=23 ng/dL (age- and sex-adjusted LabCorp reference range=0-20 ng/dL)

Child B was higher than the reference ranges.

Laboratory analyses for androgen metabolites revealed an elevated serum testosterone=18 ng/dL (age- and sex-adjusted LabCorp reference range=0-10 ng/dL)

Now, here is one that amazes me:

Additionally, analyses of Child D’s blood androgen metabolites revealed a serum testosterone=153 ng/dL (age- and sex-adjusted LabCorp reference range=0-350 ng/dL) and serum/plasma DHEA=291 ng/dL (age- and sex-adjusted LabCorp reference range=183-383 ng/dL) within their respective reference ranges.

After extensive discussions with his parents concerning the risks, benefits, and alternative treatments available, a decision was made to place Child D on a course of LUPRON® therapy.

It doesn’t appear to matter. If a child is within the reference range, slightly above, or above, the answer is the same: treat with Lupron.

So, I again pose the question: is Lupron a chemical restraint? I will add a further question: is it being applied to children whose testosterone levels are not high?

Jenny McCarthy Blocked Me on Twitter!

26 May

A fascinating Guest Blog piece here from Dawn Crawford, Communications Manager for the Colorado Children’s Immunization Coalition on their Twitter activities.

How One Small Nonprofit Irked a MTV Star

It’s amazing how one simple action can result in a landside of meaning.

On May 14, I realized that the organization that I work for, the Colorado Children’s Immunization Coalition (CCIC), aka ImmunizeCOKids on Twitter, was blocked by Jenny McCarthy, aka JennyfromMTV on Twitter.

Okay, so that’s a little odd. That is the only user I know that blocks CCIC.

Sure, CCIC has put out some tweets about Jenny. She has made herself a major target for the pro-vaccine movement. What is really odd is that the block was in response to only three tweets with her user name in it. In the name of complete transparency, I’ve included the actual tweets:

ImmunizeCOKids: @shuwu – great work – “Open Letter 2 @Oprah” poetic, smart & dead-on post about deal w/ anti-vax @JennyfromMTV http://ow.ly/6uY7 (May 14, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1796433253 )

ImmunizeCOKids: Poetic, smart and dead-on post about @Oprah signing deal with anti-vax @JennyfromMTV “Open Letter to Oprah” http://ow.ly/6uY7 (May 13, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1776457638 = 13 RTs of this ow.ly shortener)

ImmunizeCOKids: Jenny McCarthy is on The Doctors TV show today – very inflammatory. She is on twitter now too @JennyfromMTV (May 6, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1716401176 )

And in all fairness, here are the tweets that just included her name and not her Twitter ID:

ImmunizeCOKids: Weigh in! Future of BioPharma: Jenny McCarthy vs Autism and its effects on the public http://ow.ly/6ggj (May 11, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1765254086)

ImmunizeCOKids: Why is Oprah Winfrey promoting vaccine skeptic Jenny McCarthy? Slate Magazine http://ow.ly/5rFB – thanks @JeffStierACSH & @bobfinn (May 6, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1718911892)

ImmunizeCOKids: Agreed on the fiction of vaccines = autism part. Thanks Babble! “Jenny McCarthy To Get Her Own Talk Show?” – FameCrawler http://ow.ly/5gZ7 (May 5, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1708699412)

Social media is a very important strategy for CCIC’s mission of increasing vaccination rates to keep Colorado’s kids healthy. CCIC engages in Facebook, Twitter and YouTube to share our message of confidence in the safety of vaccines. Specifically, we use Twitter to encourage and support the majority of parents who are vaccinating their children, confront misinformation about vaccine safety and share articles from a wide array of sources.

Blocking on Twitter? What’s the Point

As someone who lives and breathes social media (I author three Twitter accounts), the blocking function on Twitter has always perplexed me. Why would you ever want to sever a line of communication in this way?

For those unfamiliar with the function, the block feature on Twitter ensures that you and the blocked user do not follow each other or direct message each other. It doesn’t prevent the blocked user from visiting the user’s profile or writing ‘@ replies’ about them. It just ensures that the user is blissfully ignorant of all the comments the blocked user is continuing to add to Twitterspace. This is from Twitter on their blocking function:

Are you sure you want to block ImmunizeCOKids? Here’s what blocking means:

You will no longer show up in the blocked person’s list of friends.

Your updates won’t show up on the blocked person’s profile page.

The blocked person will not be able to add you as a friend.

For us at CCIC, it is the rich dialogue that makes Twitter so powerful. We receive tweets at least once a week from parents telling us that we are liars and that they staunchly believe that vaccines are dangerous or that vaccines cause autism. We want to keep the dialogue open with all parents. We want to know what exactly is frightening parents and what concerns them about vaccines. It is such a great asset to be connected with concerned parents, have a respectful conversation that educates and empowers parents to make an informed decision about the health of their children.

Moreover, a ‘brand’ like Jenny McCarthy blocking CCIC on Twitter has interesting social media branding implications. It encourages us to assume that she isn’t open to any opposing views. It tells us that contrary to what she says in the media, she doesn’t want a dialogue about this issue. She wants a platform.

David and Goliath

So why are we so excited about being blocked by Jenny? It’s that she cared enough to take the time to block CCIC. It’s that she cared enough about what we are saying to end the conversation.

It’s a lot like David and Goliath. Jenny is a super-human symbol of the anti-vaccine movement (Jenny states that she is ‘anti-toxin’ and not against vaccines- aren’t we splitting hairs?). CCIC is a small but vocal organization in Colorado making sure physicians, nurses and public health providers get the vaccines, resources, and continuing education they need to keep kids healthy. Our total budget amounts to about 1,400 copies of Jenny’s latest book (which not a dime of that budget comes from pharmaceutical companies, btw). CCIC is insignificant in Jenny’s world but important enough to heed a reaction.

Can this open a dialogue?

A good vaccine advocate friend pointed out that this might be an opportunity to have the sides of the great vaccine divide sit down and have an open, real conversation. We think this is an opportunity to come together on the one issue that we can agree on which is protecting the health of children.

So in the end, this is an honest, open invitation to Jenny McCarthy to have a conversation. We both want to do what is right for children; we just have different paths to the same goal. Let’s find a common ground of respect and move forward in protecting children.

Until then, we’ll be here in Colorado protecting children from disease just like we do everyday. Jenny, we hope to hear from you soon. You know where to find us on Twitter.

About the Author: As the Communications Manager for CCIC, Dawn Crawford leads all messaging for the Colorado Children’s Immunization Coalition (CCIC). CCIC is a state-wide nonprofit that ensures that physicians, nurses and public health departments get the vaccines they need to keep Colorado’s kids healthy. CCIC is very active on the ‘interwebs’ as an advocacy organization promoting the prevention of vaccine preventable diseases. You can find them on Facebook, Twitter and YouTube.

Bravo Age of Autism

20 May

Yep, you read that correctly.

In a recent blog post on the Age of Autism blog, Dr Lorene E.A. Amet wrote about “Testosterone and Autism”. While much of the piece seems to be fighting a straw man (the theme is that Simon Baron-Cohen wants to use testosterone to screen for autism prenatally–without a link to the story or a quote from SBC, I found this difficult to wade through). But, as part of her piece, Dr. Amet wrote:

It is of great concern that studies on testosterone and autism are being misinterpreted, leading to the use of therapies aimed at disturbing steroid hormone production in individuals with autism. Currently, many autistic children may be being treated, without proof of safety and scientific and medical evidence of benefit, with a view to reducing their hormonal secretion of testosterone (Lupron Therapy, Spironolactone). The rationale behind advocating these therapies appears to be based on a misunderstanding of autistic behaviours and without systematic laboratory evidence of abnormal testosterone levels.

I had to double check that I was reading the right blog! I mean, Age of Autism allowed someone to state that the the rationale behind using Lupron to treat autism is “based on a misunderstanding”.

For those who are lucky enough to not know, Lupron as a treatment for autism is the pet project of Mark and David Geier. These are near heroes to the world of Age of Autism, due in large part to their promotion of REALLY bad epidemiology (for example, here, here and here on Epiwonk’s blog) to support the thimerosal/autism link.

The Geiers took the testosterone theory of Dr. Baron-Cohen and ran with it. Ran without knowing what they were doing or where they were going. Somehow they came to the conclusion that Testosterone binds with mercury in the brain, making it difficult to remove the mercury with chelation. Reduce the testosterone in the system, they guessed, and one could get the mercury out. Since in their world autism is caused by mercury, this will “recover” or “cure” people of autism.

Doesn’t make any sense to you? That’s because it doesn’t make any sense. At all.

Even though the idea of using lupron is misguided and potentially dangerous, that doesn’t mean that the groups that sponsor the Age of Autism blog would be willing to out the Geiers, even without specifically naming them, for the unscientific team that they are.

To be honest, I think the Age of Autism editors just missed that paragraph by Dr. Amet before approving it to be published (if they approve at all).

But, it’s there now for all to read. Bravo Age of Autism. Bravo for joining the world of people who find the Lupron Protocol to be based on a “misunderstanding” of the science.

Australian Autism Group block autistics

20 May

I got this from an online friend and member of ASAN Australia.

A4 LOCKS OUT AUTISTIC MEMBERS

STATEMENT CONCERNING A4 – AUTISM ASPERGER ADVOCACY AUSTRALIA

ASAN AUSTRALIA understands from its members that as of today all Autistic members have been exclude from the Steering Committee of A4 (Autism Asperger Advocacy Australia) which has now been renamed the A4 Advisory Group. Convener of the A4 Advisory Group Bob Buckley states in an email to all A4 members:

“A majority group decided to separate itself from a minority dissenting group (formerly in A4 SC) who do not accept and object to long-standing polices and practices of the A4 SC.”

This minority dissenting group just happens to contain all of the people with a diagnosed Autism Spectrum Disorder that sat on the A4 Steering Committee up until 18/5/09. This minority group has long been battling to be part of the national voice that is A4 and now finds themselves excluded from the very group that once claimed to represent them.

ASAN AUSTRALIA finds this situation unacceptable, reprehensible in fact. We suggest that in light of this move A4 not be seen as a legitimate voice for those on the autism spectrum. Nothing about us without us.

An ASAN AUSTRALIA Convener can be contacted for comment via autisticadvocacy@gmail.com

This is a very silly move. I’ve emailed A4 to see if they have any comment regarding the issue.

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