David Kirby is right (and wrong)

6 Apr

David Kirby has an excellent title for his blog post: ‘CDC Has Lost Control of the Autism Argument’.

I happen to to think he is 100% gold-plated correct. In fact I would go even further than that – the CDC, the FDA and the AAP have become, on this issue, little short of a laughing stock. They have bungled, mismanaged, failed to address and not known how to retort at just above every step of the process.

Controversially perhaps I think a lot of it has to do with the bureaucratic nature of these monoliths – they need to reform their way of working. They’re slow and outdated in their PR and media handling. That is not to say that the people working within these systems are terrible useless people – clearly they are not – but they operate within a system that cannot seem to effectively communicate the scientific truth behind the various vaccine hypotheses.

And now we truly _do_ have various vaccine hypotheses. Once it was ‘….nothing more than mercury poisoning.’. Then it was the MMR too. Then it was a combination of both. Then it wasn’t _just_ mercury in vaccines it was all the other ingredients too.

Now we have another twist: the mito/autism/vaccine hypothesis which I have no doubt has sent scores of parents all over the Western world forking out for yet another set of tests and will no doubt prompt yet another set of questionable treatments repackaged and rebranded for autism.

I think its worth while remembering at this point that, despite the furore over the last few weeks, one thing has not changed: *the science* .

All the talk shows and Larry King appearances and cloak and dagger leaked reports are all very exciting and good blogger fodder for people like me and David but the bottom line is this: no new science has been added to the equation regarding any vaccine/autism hypothesis. So, when I read the Larry King transcript and saw David snapping ‘the debate is over!’ I raised an eyebrow as I couldn’t recall any new science being brought along that night (or any other night) that had caused the debate to be over.

Anyway, back to David’s HuffPo entry. Now, I’ve swapped very courteous emails with David Kirby and whilst I have also posted quite angrily about him too I think he cares about people. Which is why when I read a paragraph such as the following I get perplexed. Here’s David:

A recent government decision to award nine-year-old Hannah Poling taxpayer dollars for her multiple vaccine-induced autism, has left parents anxious and alarmed….

A recent government decision. Hmm. Lets see what the Special Masters who are overseeing the Autism Omnibus (of whom Hannah Polings case was until recently a part of) said:

….reports have erroneously stated that the Office of the Special Masters has recently issued a “decision,” “opinion,” or “ruling” concerning the issue of whether a Vaccine Act claimant’s autism symptoms were caused by one or more vaccinations. The OSM has not issued any such decision, ruling or opinion.

No decision.

And David Kirby also refers to Hannah Poling’s ‘multiple vaccine-induced autism’. Lets see what the OSM says:

this court has issued no decision on the issue of vaccine causation of autism

But maybe by ‘government’ David means the HHS? Not the courts? If thats so, can David – or anyone else – point out to me where in any HHS statement they note that have decided to award Hannah Poling money for ‘vaccine-induced autism’?

Or maybe David means someone else when he refers to ‘government’?

And lets also be clear. Not only has the OSM _nor_ the HHS referred to ‘vaccine-induced autism’, neither has any aspect of the medical literature written about Hannah Poling (or any other claimant).

So yes, I find David’s over-exuberance perplexing on occasion. I am also concerned that paragraphs such as the above are muddying waters that need to be crystal clear right now. We serve no one by misleading them either intentionally or not.

23 Responses to “David Kirby is right (and wrong)”

  1. Joseph April 6, 2008 at 14:48 #

    “A recent government decision to award”

    About that, I’d like to remind Mr. Kirby that when he pointed out similar errors in Paul Offit’s recent piece, Mr. Offit published a correction.

  2. alyric April 6, 2008 at 15:12 #

    Why don’t people call Mr Kirby flagrantly dishonest and be done with it? The evidence for that is unassailable. Therefore misleading so many people for what – keeping his speaking engagements going for another couple of years? Is it worth all the damage? There’s such an element of hysteria in all this that’s frightening. Ginger Taylor may not be the most level headed of beings even on a good day, but her shrill attack on Tayloe was bizarre.

  3. lacshmiybarra April 6, 2008 at 16:09 #

    Dear Kev,

    I am perplexed. As you have suggested, I have gone back and read numerous comments with respect to this court case. The analysis are interesting but there are some issues that I see that can make understanding this case virtually impossible.

    First, just looking at the multiple arguments and posts here it is easy to see something we all should remember: any one of us in an argument with another person with the opposite position, has difficulty conceding when we may be wrong. In fact, we will point out every single detail that may help our argument in an effort to maintain our position.

    When or if we finally do have to admit or concede to something because, for example, the facts are overwhelming toward the other person’s position, it is natural for us to only talk about enough details to show why we came to our concession or admission. We are not going to go into great detail as to all the facts we have at our disposal which shows our position to be in error. This is particularly true if we want to minimize other people using our concession facts to argue for their position.

    Now, take this case. The respondent is Health and Human Services (HHS) represented by the DOJ (department of justice). This was a concession by HHS to the petitioner that the facts did show a connection between the vaccines and the child’s resulting medical condition. Now according to what little information has been released, HHS indicates the child already HAD a mitochondrial disorder so that could not be the injury. No, the injury in this child was encephalopathy which was manifested as Autism. In order to minimize the use of this concession on any other case, naturally HHS is not going to put in every fact, only enough to show their rationale for conceding in this particular child without an argument in court.

    If the government had not conceded the causation and the court had listened to testimony, and were the decision makers in this case, they would have had to go into much more detail as to the facts which led them to their decision. It is not that the court has not YET made a decision as to causation in this case. The court will never make a decision as to causation in this case. The only decision that might be forthcoming from the special masters will be in the damages phase which is completely separate–If the parties cannot come to an agreement on damages, then a hearing (on damages only) could follow and the special master may have to decide.

    I think there may be confusion in this case about the “courts” and the “government”. In the Vaccine court, the special masters are “neutral” parties as any judge should be. They are not, if you will, the government in this case. The respondent IS the government in this case, specifically, HHS (Health and Human Services) of which the CDC is included. The respondent (HHS) admitted that the child was injured by vaccines. That is a fact that no amount of analysis and/or arguing on the wording can change.

    The HHS is now facing parents who want to know why they conceded this particular child’s case. HHS said it was because the case was unique and it really should not have been in the Autism Omnibus. That very well may be true. But the fact however, is that the child’s brain damage resulted in the diagnosis of Autism (full blown not PPD NOS, etc). For that reason, she would have automatically been put into the Autism Omnibus group because there is no “table injury” for autism.

    It turns out, that this child’s exact metabolic “condition” has been seen many times in other children diagnosed with regressive autism. It is not rare after all. This of course, begs the question, exactly how many kids with regressive autism and metabolic abnormalities are there? The answer to this question, probably does not answer the vaccine autism question but it certainly is an avenue worth exploration. If many autistic children have metabolic problems, there are treatments to help these kids.

  4. kristina April 6, 2008 at 16:15 #

    Really thoughtful post, Kev—-the CDC and the other government agencies and scientists have been too timid, and (understandably) felt that they have to speak accurately and scientifically. Unfortunately, the kind of reasonable, carefully weighed positions that the likes of the CDC and scientists have been trained to state don’t mesh well with the speed at which information (true or not) can be posted and rumors spread on the internet.

    Still—as alyric points out—-the bizarreness of many of the postings by “certain websites and blog” and the puerility and idiocy say a lot about the individuals posting these views. And they are individuals not the “horde” they’d like others to think they are.

  5. Joseph April 6, 2008 at 17:08 #

    It turns out, that this child’s exact metabolic “condition” has been seen many times in other children diagnosed with regressive autism. It is not rare after all.

    This is yet to be demonstrated so it is premature to make such a blanket claim. The science that exists on this is not rigorous enough. I’m sure over the next years there will be blinded case-control studies that look into this question. The debate will be substantially different if it turns out that 0.5% of the autistic population can be said to have a mitochondrial disorder vs. the 20% Kirby proposes. Plus you have to keep in mind that not all of those children will regress because of vaccination. They might regress because of an infection or apparently any stress you can think of. So it might be that 0.01% (and I’m speculating with numbers here) of all autism cases can be connected in some way to vaccines, an astronomic improbability for a randomly picked autistic child.

  6. lacshmiybarra April 6, 2008 at 17:56 #

    Kevin,

    Good point but there is no necessity for a blinded controlled study.

    For example, you take a child already diagnosed with autism, between the ages of say 2 and 6 years, and do metabolic studies (there are specific markers–but even a negative study does not mean the child does not have a metabolic problem). If the child has positive markers, then a fresh muscle biopsy can be done to confirm the diagnosis (that is the gold standard).

    Another interesting study would be to check the siblings for markers to determine whether it is an actual disease marker or an inherited metabolic susceptibility factor.

    In any case, it is an avenue that may hold promise for treatment as well as care in the exposure of susceptible children to environmental toxins that the general population can handle.

  7. alyric April 6, 2008 at 18:11 #

    Joseph wrote:

    “Plus you have to keep in mind that not all of those children will regress because of vaccination. They might regress because of an infection or apparently any stress you can think of.”

    Well yeah, which in my cynical and untutored opinion, means that the vaccine court erred just a little too far on the side of sweetness and light and awarded damages for an encephalopathy that was going to happen anyway and was most likely precipitated by something other than the vaccine, there being multiple sources of metabolic stress available. Correlation does not equal causation as we have been reminded endlessly. Even more cynically, having seen the lengths that Kirby and Co have gone to in trying to keep the vaccine litigation boat afloat, I would think it highly unlikely they will be so lenient in their judgments in the future, which doesn’t augur well for the omnibus crowd. If they had little chance before and isn’t that why Poling became disentangled from the omnibus case, it’s zero now.

  8. lacshmiybarra April 6, 2008 at 18:44 #

    alyric,

    You suggest the court erred–i suspect you mean HHS? The problem with this argument falls in line with what Joseph asserted, they can regress for multiple reasons. They typically are known to regress with respect to infections and fever. Hence, the reason, that vaccination is recommended with many of these children. I would venture to say however, that 9 vaccinations at one time would never be recommended with such a child because all of the vaccines have a known side effect of causing fever. Nearly all of the vaccines she had also have a known side effect of encephalopathy. Accordingly, to say that the vaccines could not have possibly been the trigger in this child’s case would border on the ridiculous given the circumstances.

  9. Kev April 6, 2008 at 18:59 #

    _”This was a concession by HHS to the petitioner that the facts did show a connection between the vaccines and the child’s resulting medical condition.”_

    Not so. Here is the exact wording used by the Special Masters last year:

    _”Within the past week we learned that respondent is conceding in one of the potential cases vaccines caused the “significant aggravation” of an underlying condition.”_

    (They have moved the official website around a bit and I can’t find the PDF to link to, sorry).

    So, no ‘resulting’ about it. The PDF goes on to describe how this means that the case cannot be a suitable test case for the omnibus because the HHS concede vaccine damage. At no point do Special Masters, nor HHS concede vaccine damage causes autism.

    _”No, the injury in this child was encephalopathy which was manifested as Autism.”_

    Again, not so. One of the thirty symptoms she displayed was encephalopathy but as I’ve said elsewhere, in my opinion (and in the opinion of autism diagnosticians I’ve spoken to) the symptoms that are described as being caused by vaccines do not either singly or together offer enough for a diagnosis of autism.

    _”In order to minimize the use of this concession on any other case, naturally HHS is not going to put in every fact, only enough to show their rationale for conceding in this particular child without an argument in court.”_

    But the Zimmerman/Poling case study _did_ put in every medical fact. Please see the post and comment thread here.

    _”The respondent (HHS) admitted that the child was injured by vaccines. That is a fact that no amount of analysis and/or arguing on the wording can change.”_

    And no one is disputing it. The fact of vaccine damage is well known and accepted. If it wasn’t then the Omnibus wouldn’t exist in the first place. What is in question here is _do vaccines cause autism_ not _do vaccines cause features of autism’ or _do vaccines cause encephalopathy_ or _do vaccines have medical risks like every other medical procedure_ . We know the answers already.

  10. lacshmiybarra April 6, 2008 at 19:31 #

    Kevin,

    Okay, I was warned about this group…but I tried…

    Kevin says: Not so. Here is the exact wording used by the Special Masters last year:

    “Within the past week we learned that respondent is conceding in one of the potential cases vaccines caused the “significant aggravation” of an underlying condition.”

    Kevin, what exactly do you think the aggravation was? Kevin, it was encephalopathy and autism.

    Please go back and read what I said in the above posts. Stop trying to make assessments with what little information you have available to you. You are wasting your time. I know I have wasted too much time already. BYE BYE

    Hopeless. bye bye

  11. Matt April 6, 2008 at 21:57 #

    Kev,

    I think the document you are thinking of is here

    Click to access autism%2012%2010%2007.pdf

    The wording on the concession document Mr. Kirby posted on his blog was

    “In sum, DVIC has concluded that the facts of this case meet the statutory criteria for demonstrating that the vaccinations CHILD received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder.”

    lacshmiybarra: I am not following your point. An aggravation (which is a specific term for the vaccine court) means that an existing condition was made worse. Unless you are stating that Ms. Poling had autism before the vaccines, it seems unlikely that the “aggravated” condition was autism.

  12. Regan April 6, 2008 at 22:25 #

    Just seemed related

    http://www.idsociety.org/newsArticle.aspx?id=10812

  13. Kev April 6, 2008 at 23:14 #

    _”Kevin, what exactly do you think the aggravation was? Kevin, it was encephalopathy and autism.”_

    Really? Just before you flounce off would you mind showing me exactly where it says that? Encephalopathy was defintely listed amongst her symptoms. Autism was not. The Case Report I alluded to above was not part of the legal process and fully described Hannah’s condition. It was also co-written by Jon Poling.

    _”Please go back and read what I said in the above posts. Stop trying to make assessments with what little information you have available to you.”_

    Riiight. So instead of making assessments with the information, I should just listen to you? I don’t think so.

    You don’t seem to have understood either the HHS report nor the Zimmerman/Poling case study. I assure you, reading them properly will not be a waste of your time.

  14. Schwartz April 7, 2008 at 02:05 #

    Kev,

    Your postings still surprise me on occasion, and I mean that in a positive way.

    My take from the wording of the special masters (and I read the link when you first posted it) is that the Special Masters haven’t made a ruling yet. The HHS has conceeded that the vaccines have caused damage, so there will not be a hearing on causation or damage (as both should have been defined in the concession). This is from the information your source provided on the overall process.

    The special masters WILL rule on compensation, and since that hearing has not been held yet, they of course have made no ruling on the topic. Again, since the special masters did not make a general ruling on causation (since they’re still hearing the test cases) their statement is correct in that they haven’t ruled on general causation. However, this doesn’t invalidate the point that the HHS HAS ruled that in the Hannah Poling case, the balance of probabilities is that vaccines caused or contributed to damage in the form of Encephalopathy.

    I believe this is consistent with what both you and David are saying.

  15. Doctor Doom April 7, 2008 at 09:45 #

    Oooooohhhhh, I’m scared…(I’m sure you’ve seen this already…)

    Why does it seem like everything Kirby writes is “the big bombshell”, “a major development”? Has he taken any journalism training beyond basic writing 101 to realize that not every story should be “the big one”, otherwise people ignore the news (i.e., the boy who cried wolf…). Although I guess the only people who actually believe what he writes is the mercury militia…

    Hello all
    >
    > Just a little heads up to my friends – and especially, non-friends –
    > that I am working on THREE new stories – all of them bombshells.
    >
    > I expect the first one to break early this week – It involves new
    > documents received through FOIA that are nothing short of shocking –
    and
    > I am not shocked by much anymore. I hope the AJC will run it.
    >
    > The second one might break by the end of the week, or early the
    > following week. When it is announced, it will keep certain
    government
    > folks up nights, worrying, if not speed-dialing their attorneys.
    >
    > Finally, the third piece of news might be a few weeks away, but it
    is
    > also rather nuclear. It has to do with the many more Hannah Poling
    > carbon copies out there – and the impact this will have on future
    court
    > cases, not to mention public opinion.
    >
    >
    > As Hillary Clinton likes to say, now is when the fun part begins.
    >
    > Have a great weekend.
    >
    > DK
    >

  16. Ms. Clark April 7, 2008 at 10:00 #

    I saw that, it reminded me of a press release for “new improved TIDE laundry detergent!” (or the new, new Pepsi!). This one is the really bestest new product. Not like the previous 70 bestest NEW! TIDEs, this is really, really the bestest one this time… no really.

    It looks like PR. Not journalism.

    I wonder if Kirby knows what real journalism looks like now?

  17. Joseph April 7, 2008 at 16:32 #

    If the child has positive markers, then a fresh muscle biopsy can be done to confirm the diagnosis (that is the gold standard).

    A case-control study would still be a good idea. Let’s recall what happened with Wakefield’s work. You do something the wrong way, and you can get false positives. Let’s find out to what extent non-autistic kids test positive for mito disorder using the same medical tests, without the tester knowing if the samples are from autistic or non-autistic kids.

    Without a case-control study and proper statistical analysis, proposing a risk factor, like David Kirby has, seem dubious to me.

  18. Patrick April 7, 2008 at 17:56 #

    Well now I wonder why I even bothered to welcome you in mr or ms hopeless bye bye.

    It appears you had already made up your mind and came not to seek information as claimed, but to stir your own version of the OAP pot.

    Don’t let the door hit you on the way out!

  19. Prometheus April 7, 2008 at 20:56 #

    David Kirby is – unfortunately – not alone in assuming that what amounts to an out-of-court settlement in the Poling case is “data” in the scientific sense.

    As Kev (and others) have pointed out, the scientific facts of the case have been known for a long time (published in The Journal of Child Neurology in February 2006). And this is not the first time that a mitochondrial disorder has been found to cause autism (look up SLC25A12, TRNK and TRNL1 in MedLine). Yet, to read the Kirby “bombshells”, you would think that there has been a scientific breakthrough.

    If a “breakthrough” has occurred, it is solely in the PR arena. I doubt that many parents of autistic children are going to be able to “cash in” on the “new-found” mitochondrial “cause” of autism. I suspect that mitochondrial disorders are going to be fairly uncommon, even in the autistic population.

    On the other hand, the new rush to mitochondrial testing will be a boon for “alternative” practitioners. Although real mitochondrial testing is complicated, delicate work, there’s nothing preventing fringe practitioners from cobbling together a “panel” of “mitochondrial tests” to peddle to desperate parents.

    I will go so far as to even make a few predictions:

    [1] As soon as parents discover how involved real mitochondrial testing is (lots of blood tests, muscle biopsies, etc.), there will be a few “brave, maverick doctors” (and laboratories) that will claim they can test for “mitochondrial dysfunction” with a simple (but not necessarily inexpensive) urine, blood or hair test. One that only they can perform.

    [2] Very soon, we will be seeing lecturers talking about how mitochondrial dysfunctions can cause some, most, or all cases of autistic. These lecturers will also have either a diagnostic test or a treatment for said “mitochondrial dysfunction” – if not both.

    [3] Already, we have seen people linking mercury and vaccines (and both together) to mitochondrial dysfunction. I expect that we will eventually see all of the disparate “causes” of autism “linked” – in some way – to “mitochondrial dysfunction”. Sulfation disorders, methylation disorders, “gut dysbiosis”, gluten and casein, opioid peptides, etc. will all eventually be “shown” to cause “mitochondrial dysfunction”.

    [4] I expect to see the proponents of various “alternative” treatments for autism link them to a mechanism (not necessarily a plausible mechanism) that affects the mitochondria. This has already been done with HBOT, which merely serves to underscore that plausibility is not required (HBOT is a known cause of mitochondrial stress, due to increased reactive oxygen species).

    [5] The various autism “advocacy” groups will soon find some way to link their particular (or peculiar) view of autism to “mitochondrial dysfunction”. I expect that even some of the ABA supporters will find a way that ABA contributes to “mitochondrial health”.

    [6] Finally, I expect – in the near future – to see supplements, potions, tonics and gadgets that claim to “support mitochondrial health” offered for sale. I also suspect that they will be suggested for children who are not currently autistic, in order to prevent autism.

    It will be interesting to see how I do with my predictions. I’ll predict that I do better than Sylvia Browne or John Edward.

    Prometheus

  20. Schwartz April 8, 2008 at 07:34 #

    Prometheus,

    Predicting that charletons will take advantage of any situation is like shooting fish in a barrel.

    I predict the following:

    1) We’ll see new cases where drug companies withheld research that their new expensive drugs were not as effective as the ones used before.

    2) We’ll see new cases where drug companies spent exhorbitant amounts of money on doctors to influence their decision making.

    3) We’ll find new evidence that marketing and money spent on doctors actually does influence their decision making.

    4) We’ll find out that more scientists at the FDA have been bullied into silence after management decided to ignore scientific research.

    5) We’ll find more evidence that doctors don’t know how to diagnose Autism and as a result many children are not getting early treatment.

    Whew, that was tough.

    Not only did you hit the side of the barn on your set, you even accidentally got the part about PR breakthrough right. I’m surprised you initially confused his writing with that of a scientist — “Yet, to read the Kirby “bombshells”, you would think that there has been a scientific breakthrough.” — It’s all about PR right now, and he’s certainly achieving his objective.

    I predict we’ll both see our predictions come true. Somehow, being right on these cheap predictions doesn’t make me feel smarter. How about you?

  21. Ms. Clark April 8, 2008 at 09:00 #

    One thing about Prometheus’ predictions is that most new parents of autistic kids won’t know about them so they are worth stating. They are also on topic, where yours are not. Making you appear to just be here to be obnoxious. I predict that you will now say something more obnoxious and probably also off topic. (Whew that was easy.)

  22. Schwartz April 9, 2008 at 06:08 #

    Ms. Clark

    I want to make sure you can join the club of obvious predictions.

    “Making you appear to just be here to be obnoxious.”

    Funny, you got the point of all three of our posts, didn’t you.

  23. Regan April 11, 2008 at 01:29 #

    Prometheus says,
    “On the other hand, the new rush to mitochondrial testing will be a boon for “alternative” practitioners. Although real mitochondrial testing is complicated, delicate work, there’s nothing preventing fringe practitioners from cobbling together a “panel” of “mitochondrial tests” to peddle to desperate parents”

    and the rest of what you said.

    Well spoken.
    Is this a wager? Because if so, we should just send you the money now. Judging from the past, it’s a slam dunk.

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