David Kirby Speaks in London: Press Has No Interest

David Kirby, the famous journalist who had leaked the details of the Hannah Poling case in the media in the US, spoke in the United Kingdom last night, at Regent Hall, Oxford Street, London.

I turned up a bit early: 6:10 for a 6:30 pm start, thinking that I wanted to make sure that I got a seat, expecting the room would be quite full, but I was wrong.

The talk began slightly late at about 6:45 pm, and by that time there were about fifty people there, at most.  I was amazed that in a country where there are higher rates of autism than in most of the US that so few people bothered to turn up to hear what this man had to say.

Kirby gave an excellent talk.

I wasn’t sure what to expect since I had seen his work ridiculed on the some of the pro-vaccinationist websites, although I had never read his book or his work at The Huffington Post.  I suppose to be completely fair, I should point out that they don’t call themselves pro-vaccinationists, they tend to call themselves skeptics, or “science-based” or “evidence-based”, implying of course that people who are skeptical about vaccines and who look at evidence don’t exist, or that it is some sort of oxymoron.  It reminds me a bit of being at university where a scholar would refer to her theory as the ‘rich, complex model’ and the theory of someone who disagreed with her as the ‘impoverished, superficial model’.

When Kirby began his talk, he made it clear that he’s not anti-vaccine, nor is he a crusader and that above all, he is a journalist who leaves the science to the scientists.  He pointed out that when he goes home at night, he forgets all about autism; he has no stake in this game and no children.  Along with this topic, he is also working on a project concerning factory-farming of animals, and is writing a book, and none of it has anything to do with autism.

He further pointed out that he doesn’t care whether it is the vaccines that are causing autism or not.  He says that he began researching this area to figure out what was happening that was causing these huge rises in autism cases, and whether it is vaccines or something else doesn’t matter to him, because he is simply working to try and uncover the cause, hoping once discovered the autism epidemic will be able to be stopped.

Kirby began by considering facts and studies that supported the idea that vaccines and autism were not related, and then he turned to those that did suggest a relationship.  He discussed the major studies that are generally considered to be evidence that vaccines are safe, and pointed out all the areas in which these epidemiological studies had methodological problems that directly called the results of the study into question – in many cases by the authors of the studies themselves.  I had already read all the studies he discussed, so I didn’t hear a lot that I didn’t already know, but it was very interesting to have all the information from these studies presented back-to-back so that one could see that as a body of evidence it wasn’t terribly convincing.

But the most amazing part of this talk was that there was no one from the press there.

Well, there was one woman, who said she was a journalist, and that she tried to get someone to commission her to attend the event and write about it, but no one was willing, so she came out of her own interest.  She  pointed out that a notification about the talk had been disseminated among the usual channels in the journalistic community, and that she was certain that the lack of press had nothing to do with people not being aware of the talk.

Meanwhile Hannah Poling is big news in the states and people are now realising that many more children seem to have the markers of mitochondrial dysfunction than the US government originally claimed.   In spite of initial comments by the government health offices that Hannah had an extremely rare inherited condition (in fact Kirby said that the test case intended to replace the Hannah Poling case turned out to have all the same markers and condition as Hannah did, although I haven’t yet confirmed this myself) that the settlement did not mean that the government believed that vaccines cause autism.

But in the midst of this big news that lots of parents are following very closely online, things in the press here are strangely, almost bizarrely silent on this matter.  David Kirby even mentioned that he had a BBC interview scheduled which was canceled, and The Daily Mail commissioned him to write a piece on this subject, which he did, which they then decided not to print.

The Daily Mail did however choose to publish this poorly researched article by Barney Calman about biomedical interventions for autism.  Calman is a journalist who seems to have unfortunately joined forces with Michael Fitzpatrick, a GP who repeatedly and zealously denies that vaccines do any harm or that they have any link to autism.  Fitzpatrick has a son with autism (a teenager who is institutionalised), which he takes special care to mention whenever he speaks or writes, as if this somehow makes his claims weightier.  In fact, Fitzpatrick was at the Kirby talk yesterday, and after Kirby presented his material and then asked for questions, Fitzpatrick hurried not to make any substantive rebuttal of anything Kirby presented, but instead to ask how it could be the case that vaccines contributed to autism when there weren’t any GPs, paediatricians or pediatric gastroenterologists who believed it.

So it would seem that the press in the UK is only willing to publish pieces that are pro-vaccine, and against biomedical treatment for autism.  It doesn’t seem to matter if those articles are even remotely factually correct, or if the primary proponents make sophomoric claims from authority that something must be true because a bunch of doctors think it’s true.

Surely if work like that is worthy of any journalistic effort, then Hannah Poling deserves her own newspaper – and yet she gets nothing in this country.  For myself, I find the silence of the press completely deafening, and I am happy to see people around the country taking notice.

A Lesson in Remembrance of Lorenzo Odone of Lorenzo’s Oil

“…my brother’s story also taught me about the loneliness of the visionary, the selfishness of our culture, and the arrogance that blinds many scientists.” – Christina Odone

Lorenzo Odone was a boy diagnosed at age 6 with the rare genetic disorder adrenoleukodystrophy (ALD), where an accumulation of fatty acids occurs in the body due to a missing transporter protein. This results in damage to the myelin sheaths that insulate the axons of nerve cells in the body, and signals can no longer be sent via these axons, resulting in increasing disability, such as losses of sight, hearing and movement.

Soon after his diagnosis, Lorenzo’s parents, Augusto and Michaela, were told by physicians that their son would soon be dead, and that there was nothing to be done.

But the Odones instead set about researching Lorenzo’s disease, and came upon a combination of acids (Lorenzo’s Oil) could stop the production of the fatty acids that were causing the problem. Once given to Lorenzo, the oils worked, and although they could not re-myelinate his already damaged cells, they greatly slowed the progression of the disease.

The Odones created an organization aimed at accelerating and supporting research into the repair of myelin and treatment of leukodystrophies and demyelinating disorders: The Myelin Project.

Lorenzo died just a couple of days ago, the 30th of May 2008, the day after his 30th birthday: 22 years later than the physicians predicted. And it was only in 2005 that research on the Odones’ patented Lorenzo’s Oil showed that young boys who had yet to display symptoms of ALD, who has the oils added to their diet, had a statistically lower chance of developing signs of the disease. And more research is being done.

It’s a lucky thing for Lorenzo that his parents persevered, and weren’t satisfied with the best answers that medical science had to offer. Today skeptical parents engage in similar acts of love and dedication to their children when they demand unbiased studies addressing the safety of the vaccine schedule, or they biomedically treat the medical problems borne by their autistic children, when physicians everywhere assure the public that yes, everything is safe, or no, nothing can be done, and anyone who says otherwise is a quack or a parent-in-denial. In spite of the “arrogance of scientists” that Lorenzo’s sister Christina Odone refers to in The Daily Mail, parents all over the world act against the advice of the medical establishment that said nothing could be done for Lorenzo.