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What would you expect if you gave $1,500 to an “autism” charity

22 Nov

If you do a Google search for SafeMinds the link you get says “SafeMinds Autism Mercury Thimerosal”. SafeMinds considers itself to be a part of the “Autism Collaboration” (which, as far as I can tell, is the group that is supporting Andrew Wakefield now that he has lost his job with Thoughful House). A member of SafeMinds holds a chair on the Interagency Autism Coordinating Committee.

So I think it safe to say that they pitch themselves as an autism charity. If you were to donate, say, $1,560, would you expect some or all of that money to go towards something that might help the autism community?

Well, if you had paid for the the Pass the Popcorn but HOLD THE MERCURY! Safeminds Theatre PSA Campaign that SafeMinds recently put on, you would be mistaken. The campaign was an effort to raise money to put this public service announcement (PSA) into theaters this week.

You can find details, where else, on the Age of Autism blog. If you go there, you will see that three people donated at the $1,560 level, each such donation would put the PSA on 25 screens all week in New York or Los Angeles. Many others donated at lower levels.

The Age of Autism had another fund-raiser recently. That story was met with skepticism even though it was, I have been told, supported by Andrew Wakefield himself. The fundraiser was for legal aide for an autism family. So far, about $1800: enough to put the PSA on a little more than 25 screens. None of the prominent “editors” of the Age of Autism blog came forward in support.

SafeMinds. Age of Autism. At least you know what their priorities are. Autism isn’t number 1, vaccines are.

One might respond that to SafeMinds (and Age of Autism), vaccines and autism are not separate issues. They still subscribe to the idea that thimerosal in vaccines caused an autism epidemic. That by preventing thimerosal containing vaccines being given to infants and pregnant women is, in their view, preventing autism.

To that I answer: why spend money putting the PSA on screens in Los Angeles? In 2006, California law prohibited administering thimerosal containing vaccines to children under 3 and to women who are pregnant. Yeah, they are warning pregnant women and parents of young children against—something they aren’t going to get anyway. But that doesn’t stop SafeMinds from putting an image of a syringe next to big puddles of mercury in front of families.

addendum: it appears that at least one theater chain said no to the PSA.

Callous Disregard: Epilogue

17 Nov

We’ve already discussed Andrew Wakefield’s book, Callous Disregard, a few times here at LeftBrainRightBrain. I discussed his chapter discussed “Why”, which is painful to read, both for Mr. Wakefield’s approach to the subject and his attempt at creative writing. I discussed his chapter 1, and some of the “myths” he claims there are in the discussion of the paper in The Lancet. In that piece I referred to wading through “Callous Disregard” as a land war in Asia. Around every corner there is a statement which just doesn’t hold up to scrutiny. Given that, you probably won’t be surprised to see that I have skipped to the end, the epilogue of the book. I’ll quote two paragraphs.

The first is voiced as a statement to those those would promote vaccines:

There is no place for indulging futile displacement activity, sanctimonious posturing, and self protectionism. In the battle for the hearts and minds of the public, you have already lost… Why? Because the parents are right; their stories are true; their children’s brains are damaged; there is a major, major problem. In the US, increasingly coercive vaccine mandates and fear mongering advertising campaigns are a measure of your failure–vaccine uptake is not a reflection of public confidence, but of those coercive measures, and without public confidence, you have nothing.

Mr. Wakefield likes to position himself as a moderate, someone still asking whether MMR causes autism. How exactly that squares with a clear statement, “..their children’s brains are damaged…” I don’t know.

The final paragraph is a closer to his “why” chapter.

Sinking low, out over Crystal Mountain, the Texan sun still hurts the land. The cedars draw on parched earth. And the sun is gone. Stars creep into the night sky and the forest begins to move. My children are asleep and my beer is cold. From the lops of Willie Nelson, the ballad of Bobby McGee falls with a salty melancholy: “I’d trade all my tomorrows for a single yesterday”. And for a moment I am there, on the cold, wet precipice of Hounds Ghyll viaduct, 180 feet above oblivion as a small boy looks questioningly into my face, slips my hand, and is gone.

I found the essay (for want of a better word) “Why” to be a bit disturbing. This closing paragraph only confirms that impression.

Callous Disregard: “That Paper”

16 Nov

We recently discussed here on LeftBrainRightBrain some sections of the transcripts from the GMC fitness to practice hearing that was held for Andrew Wakefield. I’ve recently added Mr. Wakefield’s book, Callous Disregard to my reading mix. Frequent visitors to LeftBreainRightBrain may have noticed that my blogging output has dropped. There is just so much, so much, to respond to in that book that it has become difficult to find good and somewhat brief examples of the misinformation that Mr. Wakefield is attempting.

As you can see, even this example isn’t so brief. But it does show a clear example of Mr. Wakefield’s methods, past and present.

Mr. Wakefield likes to use citations. They look good and, if you don’t look closely, they make it seem like he has data to back up his claims. Catherina at JustTheVax blogged that Andrew Wakefield uses references to support his ideas, but if you follow those references you get a very different story. Catherina’s example showed that Mr. Wakefield claimed that his work has been replicated by others when, in fact, his references showed nothing of the sort. No surprise: he does this again in his book. The citations don’t prove his point. Much to the contrary, in fact.

Following that sleight of hand, as I followed some of his references and checked with the GMC hearing transcirpts I kept finding more and more examples of exactly why he lost his license to practice medicine.

For example:

1) Mr. Wakefield knew full well that many of the parents of the children being seen at the Royal Free were on the road to litigation. Not only that, but Mr. Wakefield’s stated goal was “…to make sure that their legal cases are presented in the best possible light”.

2) Mr. Wakefield did not make his activities with the legal aid board public. He informed one of his authors, but there isn’t evidence he informed the other 11. If he knew it was important to inform one author, why leave the rest in the dark about his activities?

3) Mr. Wakefield claims that a news story made his activities public. The news story never mentions his name. In fact, it tends to prove just what Mr. Wakefield denies. The news article states that the study at the Royal Free was being organised by silicitors.

Orac over at Respectful Insolence would call “Callous Disregard” a “target rich environment”. At some point, when every page, every sentence, every reference has a high probability of being false, it becomes something worse. I have to pull in a popular culture reference–the Princess Bride–as this is what comes to mind as I read “Callous Disregard”: it is a land war in Asia.

This comes to mind because I am bogged down and it is only chapter 1.

Chapter 1 of his book is entitled “That Paper” and focuses on the 1998 article in the Lancet. Mr. Wakefield published essentially the same discussion of “That Paper” in the magazine The Autism File.

Let’s just pick a couple of the so-called “myths”, shall we? From Callous Disregard:

My involvement as a medical expert was kept “secret”[14].

False– at least one year before publication, I informed my senior coathors[15], the head of the department, the dean of the medical school[16], and the CEO of the hospital. This fact was also reported in the national press 15 months prior to publication.

He informed his “senior” coathors? Why not everyone? Let’s take a look at citation 15, shall we?

[15] Correspondence between Dr. Wakefield and Professor Waker-Smith, February 3, 1997 and February 20, 1997.

Do you know based on that what letters he is talking about? They are in the transcripts for the GMC hearing, and they are in the press complaints commission (PCC) complaint that Mr. Wakefield filed (is he actually moving on that at all, by the way? It seems to be hanging for a long time with no activity).

The letters are reproduced below.

Note a few things here. This is in February 1997. That’s a year before the Lancet study was published. Mr. Wakefield’s letter is not to his “senior coauthors”, plural, but to one coauthor. He had 13 authors. So were eleven co-authors left in the dark? Why only let one author know?

Also note that the children in the Lancet study had already been seen at the Royal Free. Child 1 was admitted in July 1996. Mr. Wakefield had seen the children and he knew that many were pursuing claims. Mr. Wakefield felt it his duty to “…make sure their legal cases are presented in the best possible light”.

That is a very clear conflict of interest.

Here is the letter:

“Dear John

re: Enterocolitis and regressive autism

Further to our meeting on Tuesday 21 January, I thought it important to write to you to clarify my role in the legal issues. I fully appreciate your desire not to become involved in the legal aspect of these cases, but I feel that it is important to express the reasons that I do feel obliged to become involved.

The future for the children with whom we are dealing is very bleak indeed. Not only are the provisions for these children within the community inadequate at present, but looking ahead to the future, there will come a time when the parents of these children die, and the patients, as chronically disabled adults, left to fend for themselves in an extremely hostile world. Were there any long-term institutions left for such children, then that is where they would end up. Since these hospitals are being closed on an almost weekly basis around the country, these hopeless individuals will be left to ‘care in the community’. One does not like to imagine how it will all end. Maybe their only hope is in people taking the possible organic basis of their disease seriously enough to investigate it and institute the appropriate therapies where possible.

Vaccination is designed to protect the majority, and it does so at the expense of a minority of individuals who suffer adverse consequences. Although the case against MMR is far from proven it is one that we are obliged to investigate in view of the consistent history given by these patients’ parents and by the observations made in the United States. If this disease is caused by the MMR vaccination, then these children are the few unfortunates that have been sacrificed to protect the majority of children in this country. If this is the case, our society has an absolute obligation to compensate and care for those who have been damaged by the vaccine for the greater good. This is an inescapable moral imperative and is the principal reason that I have decided to become involved in helping these children pursue their claims. I have considered this issue in great depth and, whilst it may not be the wish of others within the group to become involved, it falls to me to make sure that their legal cases are presented in the best possible light. Fortunately, this is entirely consistent with best clinical practice which, I believe, you are providing for these children. I felt it important, however, to let you know of my feelings on this, and the position that I feel I am obliged to adopt to support these children. Without our help, I genuinely believe that the medical profession would otherwise put them to one side, as it appears to have done in many cases already. My present fears for these children are much less than the horrible imaginings if they do not receive the appropriate help that is due to them at this stage. However, I am an optimist, and I believe that this project will turn out to be both enlightening and rewarding for all those who have been involved, and I am most grateful for your help and encouragement.

Kindest regards & best wishes,

Yours sincerely”

Here is Prof. Walker-Smith’s response. Note this sentence (with emphasis added): “It is clear that the legal involvement by nearly all the parents will have an effect on the study as they have a vested interest.”

“Dear Andy

Re: Enterocolitis and Regressive Autism

Many thanks for your letter of 3 February concerning the legal issues. I can exactly understand your position and I can appreciate the compassionate human side of your argument.

My position as with measles, MMR and Crohn’s disease is that the link with MMR is so far unproven. It is clear that the legal involvement by nearly all the parents will have an effect on the study as they have a vested interest. I myself simply will not appear in court on this issue.

I would have been less concerned by legal involvement if our work were complete and we had a firm view. Never before in my career have I been confronted by litigant parents of research work in progress. I think this makes our work difficult, especially publication and presentation.

I am very excited by this work and it is very worthwhile. Simon Murch and I met today and have drawn up a draft for patient selection for your comment please.

I also feel that Dr Harvey’s contribution to the study should now be concluded and Dr Andrew Lloyd-Evans asked to join us. Do you agree with this?

With Kind Regards
Yours sincerely”

Prof. Walker-Smith made a very good comment here: I would have been less concerned by legal involvement if our work were complete and we had a firm view. Never before in my career have I been confronted by litigant parents of research work in progress. I think this makes our work difficult, especially publication and presentation.

Another “myth” which Mr. Wakefield chose to address:

Children were litigants[19].

False–at the time of their referral to the Royal Free, the time material to their inclusion in The Lancet paper, none of the children were litigants.

I don’t know what definition of “litigant” Mr. Wakefield is using, but “nearly all” of the parents were involved in preparing legal action, according to Dr. Walker-Smith. Also, Mr. Wakefield was working to “…make sure their legal cases are presented in the best possible light”.

Mr. Wakefield can define terms and redefine the English language however he wishes. I deserved to hear that the parents were pursuing legal action and I deserved to hear that Mr. Wakefield was working to help those families in their cause.

Let’s go back to another statement by Mr. Wakefield.

This fact [Mr. Wakefield’s involvement as a medical expert] was also reported in the national press 15 months prior to publication[17].

As evidence of this He cites this article in the Independent. The article doesn’t mention Andrew Wakefield at all, much less mention his side job as a paid expert for the MMR litigation:

The article [17] can be found on Brian Deer’s website. I copy it here, but will replace it with a link should he make that request.

Law: A shot in the dark; The complications from vaccine damage seem to multiply in the courtroom, writes Grania Langdon-Down

The Independent (Law, Page 25) November 27 1996

Rosemary Kessick has watched her son William deteriorate from a bright, active toddler to a destructive eight-year-old who cannot talk, play or feed himself and who lives in a frantic, rushed world of his own. She blames the MMR (measles, mumps and rubella) vaccine for the devastating changes in William, now diagnosed as autistic and suffering from a debilitating inflammatory bowel disorder which can leave him screaming with pain.

William is one of 10 children taking part in a pilot study at the Royal Free Hospital in London, which is investigating possible links between the measles vaccine with the bowel disorder Crohn’s Disease, and with autism. The study is being organised by Norfolk solicitors Dawbarns, one of two firms awarded a contract in 1994 to co-ordinate claims resulting from the MMR vaccine.

Mrs Kessick, 42, had to give up her job as a business manager to look after William, the middle of her three children. William joined the other 300-plus children bringing claims through Dawbarns only in February, because the doctors she saw during her traumatic search for answers dismissed her fears about the vaccine out of hand.

“Within weeks of the vaccination, his development slowed down, then it stopped and then he regressed. Seeing what has happened to him has broken our hearts. It means so much to finally be listened to and to find people to stand up and say the safety of these vaccines must be investigated,” she says.

Concern about vaccination has resurfaced with the Government’s campaign to introduce a new MMR booster for all four-year-olds. Most of those children will have had their first MMR at about 15 months.

The Department of Health dismisses suggested links with autism and Crohn’s disease as the work of just one researcher, and argues that children are at far greater risk from measles than from the vaccine. The latest campaign, launched on the advice of an independent committee of doctors, was needed to stop the build-up of unvaccinated children, which would inevitably lead to new outbreaks of measles.

Dawbarns partner Richard Barr is co-ordinating the families’ claims. Depending on the results of the scientific study and counsel’s advice, he intends taking on the vaccine manufacturers using the Consumer Protection Act, 1987.

The Act was introduced to offer a system for dealing with no-fault liability without the need to prove negligence, and was intended to help cases such as those involving vaccine damage.

However, critics argue that it has not been widely used because of the extensive defences offered to manufacturers. These include the “development risks” defence which says manufacturers will not be liable if, with reasonably diligent research, they would not have been able to find the fault that is now causing the problem.

The development risks defence is being challenged in the European Court as being outside the terms of the European Directive on consumer protection legislation, because it effectively incorporates negligence back into the strict liability provision.

Mr Barr also intends to pursue the medical negligence aspect but, to date, there has never been a successful compensation claim for vaccine damage under negligence laws.

Mr Barr said: “The whole field of vaccine litigation was brought to a shuddering halt by the High Court judgement in Loveday and Renton in 1988, which involved the whooping cough vaccine.

“The case centres on whether the vaccine caused brain damage, but it went horribly wrong and the outcome was the judge concluded it did not. The case was based mainly on expert opinion rather than scientific evidence and the manufacturers were able to marshal massive resources to defeat the plaintiff’s experts. We will have to try to make sure we do not fall into the same traps.”

One result of the Loveday case was that the Legal Aid Board applied the result to all vaccine damage cases and generally refused to grant aid.

Mr Barr said: “For a year, we were without legal aid but we battled on until we were eventually granted it to pursue the possibility of bringing cases under the Consumer Protection Act.

“The benefit is you do not have to prove negligence – you simply have to prove the vaccine caused the damage and that it is an unsafe product. We will also have a strong argument that parents were given no, or insufficient, information or warnings about the possible risks of the vaccine to be able to give informed consent to its use.

“I am sure the manufacturers will try to discount any causal link between the vaccine and the damage suffered by the children. They will also argue that the benefits of being immunised far outweigh the risks from the vaccine. But we will argue that the dangers of these childhood disease have been exaggerated to terrorise parents into vaccinating their children.

“I also do not think the ‘development risk’ defence is a runner, because we would argue the mechanisms of how the damage is caused have been known since the Sixties when the measles vaccine was first being tested.”

He said another line of attack would be to focus on clusters of similar side-effects associated with particular batches of vaccine, although the main thrust remained against the vaccine as a whole.

Mr Barr, who refused to let his children be vaccinated, said their research was being helped by having an in-house scientist working on the cases. Kirsten Limb initially came to them as a client after her daughter was left severely disabled through medical negligence.

Jack Rabinowicz, a partner at Teacher Stern Selby, has been involved in vaccine damage cases for a decade and is chairman of the solicitors’ steering group dealing with whooping cough claims.

He was pessimistic about the likely success of cases brought against the vaccine rather than a specific “bad batch”.

“My view is that you have to show a child was damaged by vaccine from a bad batch, as happened in a case in Ireland in 1994 which resulted in more than pounds 2m compensation. The court found in favour of the claimant after hearing that the vaccine had failed internal toxicity tests but was still put on the market.

“A full frontal attack against the vaccine itself is much more difficult. The steering group is waiting for advice from counsel and, if it is reasonably optimistic, will issue writs early next year. They will involve product liability claims against manufacturers over specific ‘hot lots’ of the vaccine and medical negligence claims against individual doctors who ignored the contraindicational warnings about having the vaccinations.”

He said the cases were at the frontiers of medicine and law and the Legal Aid Board was rightly worried about committing public money unwisely. “There have been a number of disastrous product liability cases and these will be David against Goliath because the manufacturers and doctors have unlimited resources to fight their corner.

“I think the only thing that will change the situation is if Richard Barr and I get our cases off the ground and the manufacturers and doctors scream merry hell at the prospect of paying millions in compensation and put pressure on the government of whatever hue to provide state aid.”

The only help currently offered by the government is through the Vaccine Damage Pay Unit. Since it was set up in 1979, it has received 3,749 claims and made 883 awards. However, these have been capped at pounds 30,000 since 1991, and apply only if a child is 60 per cent disabled.

Mr Rabinowicz said: “If these children were birth victims they would receive about 2m each. These vaccine-damaged children would be looking probably for upwards of pounds 1m.”

There is no reference to Andrew Wakefield in the above article. The reference to the study at the Royal Free is this paragraph:

William is one of 10 children taking part in a pilot study at the Royal Free Hospital in London, which is investigating possible links between the measles vaccine with the bowel disorder Crohn’s Disease, and with autism. The study is being organised by Norfolk solicitors Dawbarns, one of two firms awarded a contract in 1994 to co-ordinate claims resulting from the MMR vaccine.

“The study is being organised by Norfolk solicitors Dawbarns….”

So, an article which Mr. Wakefield cites in his defense states that there is a study ongoing, organised by solicitors, on the link between mealses vaccine, bowel disorder and autism.

Keep that in mind when you read this other so-called “myth”:

Children were “sourced” by lawyers to sue vaccine manufacturers.

False– children were referred, evalueated and investigated on the basis of their clinical symptoms alone, following referral from the child’s physician[18]

I’ve only covered some of the “myths”, and that is only part of chapter 1 of “Callous Disregard”. There are 13 chapters, an afterword and an epilogue. There are hundreds upon hundreds of pages of GMC testimony.

It is a land war in Asia. I don’t plan to drag myself or LBRB through it all. My hat is off to the people who sat through the entire GMC hearing, read and reread the transcripts and boiled it down to a decision, only to have Mr. Wakefield attempt to rewrite history, complete with citations.

Reading Age of Autism – All I can handle, I’m no Vladimir Nabokov

13 Nov

I read Dan Olmsted’s latest post on Age of Autism and was reminded I had yet to publish a closing post on my experiences with the book. Here’s a quote from Dan:

It’s doubly disappointing to see traditionally progressive outlets – from Salon to Daily Kos to The Atlantic to National Public Radio and PBS – ignore the evidence presented in our book and so many other places, twist the facts they can’t deny, belittle those who believe otherwise including beleaguered autism parents, and glibly trumpet tired reassurances that the concern over vaccines has been “asked and answered,” that “study after study” has refuted any relation, and that continuing to point out disturbing patterns of evidence to the contrary endangers children and infants.

Quick translation for you: “Waaah, nobody liked our book or thought it was valid. What a bunch of pooh-pooh heads!”

The embarrassing truth for Dan Olmsted and Mark Blaxill is that their book has been still-born. Take a look at the Amazon rankings compiled by Broken Link and its hard to come to any other conclusion. But why has this happened?

First off, the book is badly written. Its not an easy read in the way that Evidence of Harm was. Of course the style is different but Age of Autism is not even a well written poor story.

Secondly, the content is – well – embarrassingly one sided. Whilst B & O claim to be not anti-vaccine, the whole book – particularly part II is rife with anti-vaccine sentiments designed not so much to lead the reader to a conclusion but to batter the reader over the head with the conclusion B & O reached before sitting down to write even.

Thirdly, the content is old hat. There is literally nothing new in the book. For those of us who have followed the the whole story, AoA has nothing _new_ to add to the overall scenario. Whereas Defeating Autism, Autism’s False Prophets and Evidence of Harm all had something _new_ to add to the story, AoA merely dully repeats truthiness from 3 or 4 years ago and couples it with a retelling of historical speculation that simply reiterates what everyone already knew – mercury isn’t so good for you.

So thats that for me reading purgatory. I’m reading something very much better now that I think Sullivan and I will be blogging at length in the new year.

Autism-vaccine books, an indication that the tide has turned?

13 Nov

We recently discussed here on LeftbrainRightBrain two books, both due out in January. The first, The Panic Virus: A True Story of Medicine, Science, and Fear, is by a new name to the discussion, Seth Mnookin. The second book, Deadly Choices: How the Anti-Vaccine Movement Threatens Us All, is by Dr. Paul Offit, a name well known in the autism/vaccine discussion.

With these two books due out in the near future, it is only natural to look back at the recent past. I am thinking of two other books on autism and vaccines, Dan Olmsted and Mark Blaxill’s “The Age of Autism: Mercury, Medicine, and a Man-made Epidemic“, and Andrew Wakefield’s “Callous Disregard: Autism and Vaccines: The Truth Behind a Tragedy. Both of these books continue the old story of autism caused by mercury in vaccines and autism caused by the MMR vaccine. There is really no new science and there never was much in the first place. Sure, Age of Autism tries to apply their same “correlation is causation” arguments about mercury to other medical conditions in history, but that isn’t science. Callous Disregard is more about Andrew Wakefield’s excuses for his own misdeeds than about the science anyway. The books have been given a lukewarm reception by their target audience (neither has really sold in large numbers, and the trends are clear that the books are selling through the promotion by “friendly” blogs and book signings). Even Dan Olmsted himself recently blogged about how the formerly friendly press is now ignoring his book.

Jenny McCarthy has moved on, at least for now. The same can be said for David Kirby (but he is still giving appearances at autism-parent conventions as some sort of expert.) But, the days when Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy could hit the New York Times best seller list are in the past.

This isn’t about some sense of schadenfreude or an “our author’s books are doing better than your author’s books” sort of competition. Rather, this is a time to ask (once again), has the tide turned? Do two flops tell us that the heyday of the movement over?

Sure, there will always be a SafeMinds and a Generation Rescue out there pushing the idea of a vaccine-induced autism epidemic. But one researcher I know has told me that vaccines just aren’t even coming up as a point of discussion any more. Not in conferences (the real kind, not the parent-convention kind). Not even in public lectures.

Has the tide turned? I hope so. I really do.

Deadly Choices: How the Anti-Vaccine Movement Threatens Us All

13 Nov

I recently wrote about the book, Panic Virus, which is set to come out in January, 2011. Another book which includes sections on the autism/vaccine story is also scheduled for January: Deadly Choices: How the Anti-Vaccine Movement Threatens Us All, by Paul Offit.

The “product description” is very brief:

How did we get to a place where vaccines are viewed with horror rather than as life-saving medicine? The answer is rooted in one of the most powerful and disturbing citizen activist movements in our nation’s history—a movement that, despite recent epidemics and deaths, continues to grow. Deadly Choices is the story of anti-vaccine activity in America—its origins, leaders, influences, and impact—and is a powerful defense of science in the face of fear.

While the word “autism” doesn’t appear at all on the Amazon.com page for the book, it will come as no surprise that the autism/vaccine parent groups play a prominent role in the book’s discussion of the modern anti-vaccine movement.

Dr. Offit’s books get read. By important people. I have little doubt this one will too.

As I said with my discussion of Panic Virus, there is no joy in realizing that some of the vocal autism-parent groups are being chronicled in this way. There is, however, relief that books such as these signal that perhaps the worst is over. The public and the press are no longer giving the idea of the vaccine-induced-autism-epidemic the credibility it enjoyed only a year or two ago.

The Panic Virus: A True Story of Medicine, Science, and Fear

13 Nov

The past 15 years have seen a rise and, I would say, fall in the notion that vaccines might cause autism. I’ve often wondered when someone might write a history of the period. Somehow I thought that was still years away but I am wrong.

In January, a new book comes out: The Panic Virus: A True Story of Medicine, Science, and Fear. Seth Mnookin takes on the project of telling the story. From the sumary below and the blurbs on Amazon.com, this does not look to be the next “Evidence of Harm”. Far from it.

Here is the summary from Amazon.com:

WHO DECIDES WHICH FACTS ARE TRUE?

In 1998 Andrew Wakefield, a British gastroenterologist with a history of self-promotion, published a paper with a shocking allegation: the measles-mumps-rubella vaccine might cause autism. The media seized hold of the story and, in the process, helped to launch one of the most devastating health scares ever. In the years to come Wakefield would be revealed as a profiteer in league with class-action lawyers, and he would eventually lose his medical license. Meanwhile one study after another failed to find any link between childhood vaccines and autism.

Yet the myth that vaccines somehow cause developmental disorders lives on. Despite the lack of corroborating evidence, it has been popularized by media personalities such as Oprah Winfrey and Jenny McCarthy and legitimized by journalists who claim that they are just being fair to “both sides” of an issue about which there is little debate. Meanwhile millions of dollars have been diverted from potential breakthroughs in autism research, families have spent their savings on ineffective “miracle cures,” and declining vaccination rates have led to outbreaks of deadly illnesses like Hib, measles, and whooping cough. Most tragic of all is the increasing number of children dying from vaccine-preventable diseases.

In The Panic Virus Seth Mnookin draws on interviews with parents, public-health advocates, scientists, and anti-vaccine activists to tackle a fundamental question: How do we decide what the truth is? The fascinating answer helps explain everything from the persistence of conspiracy theories about 9/11 to the appeal of talk-show hosts who demand that President Obama “prove” he was born in America.

The Panic Virus is a riveting and sometimes heart-breaking medical detective story that explores the limits of rational thought. It is the ultimate cautionary tale for our time.

The blurb from Arthur Allen (author of Vaccine: The Controversial Story of Medicine’s Greatest Lifesaver should give you a bit more of a taste of what is to come:

“Seth Mnookin understood there was something more to the cruelly misled and dangerously misleading vaccines-cause-autism movement than just an unhappy group of parents with a need to blame someone. He saw the connection between this deathless conspiracy theory and the proliferating irrationality of a society that has supersized its information diet while starving its capacity to think straight. For that reason alone—not to mention the deft, often charming characterizations woven into its skillful and fascinating narrative—this is an important, powerful, and bracing book.”

There is no joy in reporting that segments of the autism parent community are being outed for what has been and continues to be a very damaging agenda. Damaging to the public at large and to the autism communities. No, there is no joy in that. There is however a sense of relief that perhaps the worst is over.

Change.org ask ‘Did the Anti-Vaccination Movement Cause the Whooping Cough Epidemic?’

2 Nov

A great post over at Change.org asks the question and delivers the right answer – yes, yes they did. It also targets the right org as being responsible – Barbara Loe Fischer’s anti-vaccine group NVIC.

Whooping cough is making a comeback. This summer, the highly contagious upper respiratory infection struck more than 6,000 people in California — the most cases since 1950. Ten people died, all infants.

…

The stubborn belief that vaccines are harmful to a child’s health show just how damaging — even deadly–unscientific movements like the NVIC’s are. And how wrong.

…

…not vaccinating children erodes the “wall of immunity” that keeps all kids safe from life-threatening diseases. When infections have fewer potential hosts, there is less of a chance that those infections will be able to spread from child to child. When kids are vulnerable to nasty germs — because their parents don’t immunize them — they put their friends and classmates at risk, too.

Change.org have a petition up to deliver the untasty truth to NVIC – it caters to non-US residents from all over the world. Please sign it, tweet it or retweet this post, Facebook it, blog it and email it. These people need to be held accountable for their actions.

Wakefield’s callous introduction

28 Oct

Below is a section of Andrew Wakefield’s book, “Callous Disregard”. This section is available as part of the free sample of the book. It is Mr. Wakefield’s semi-fictionalized account of a mother’s murder/suicide. A news account can be found here.

Another north-easterly wind insinuated its
futile energies between the massive brick
piers of Hounds Ghyll viaduct. Although the
wind endured, the earlier downpour had
turned to a light drizzle – light for County
Durham, in the far north of England – as
their journey came to an end.

As if for the first time, Mark seemed
attuned to his mother’s sense of purpose
and he offered no resistance. He did not
scream, or fight, or hit himself in the face;
he did not bite his scarred and scabby arms
or suddenly collapse to the ground as if
invisible guy-ropes could no longer hold
him. Instead, entranced by the raindrops
and in awe of the viaduct’s ordered
brickwork, he mouthed in silent wonder at
it all. At the midpoint of the viaduct she
turned to the north, the deep valley before
her – in places its walls sheer, glistening
black, cut by relentless waters that were
now barely visible in the fading light far,
far below. Mark looked up into his mother’s
face; beyond its years, alone, harassed,
pursued, and he understood her
unhappiness. He loved her, although he had
no way – no wiring – that allowed him to
express this.

With the aid of some old timbers she
helped him onto the parapet, her grip so
firm that it hurt them both. This was the
hardest part, the lichened stone wet and
perilous, her fear of heights. Standing there
at last, against the wind and against the
world, he looked at her and she at him.
“No,” she thought, “this is the hardest part.”
Without a word, without another thought
she stepped into oblivion, her most precious
possession taken with her, to rank in death
with Egyptian queens. They were not equal
to the wind and in one final effort it gusted
into them, threatening to smash the
waif-like Mark into the merciless viaduct.
She knew. She was ready. Falling ever faster,
she pulled him to her, love and instinct
keeping him safe.

At the time I read this I thought it could very well be entirely fiction. Not that I think that such a killing/suicide couldn’t happen. The recount, in my opinion, well, let’s just say that I sincerely hope that Mr. Wakefield never attempts to fictionalize my life or that of my family.

News accounts around the time of the event describe Ms. Rogan as a devoted mother who was growing increasingly afraid that she might lose her child. Not exactly the image presented above.

Other than a few facts, much of what happened on the viaduct is unknown. I can find no account of whether Mark had “scarred and scabby arms”. One description of him by a neighbor stated, ‘Mark was a beautiful little boy. To look at him, nobody would have known he was suffering any illness.’

What really stands out in Mr. Wakefield’s account, at least to me, is this phrase: “He loved her, although he had no way – no wiring – that allowed him to express this.”

I wonder how, after some 14 years working around autistic children, Mr. Wakefield could have written that. Not just in this case, where the police were quoted as describing the family as having “a very close and loving relationship between a mother and son”.

Detective Superintendent Harry Stephenson of Durham Constabulary said the force’s inquiries indicated “a very close and loving relationship between a mother and son”. He said: “This is an appalling tragedy and one that has been very traumatic to deal with even for some very experienced police officers. It would seem Miss Rogan was finding it difficult to cope with her personal circumstances but despite all that she seemed devoted to her son and prepared to do anything for him.

Beyond that news account, how could Mr. Wakefield write that a child had no wiring that allowed him to express his love for his mother? That sort of description is something to fight against, not something an “advocate” should be making.

Callous Disregard. Mr. Wakefield chose that title from one of the charges proven against him by the General Medical Council.

Recruitment of Wakefield’s study subjects…part 1

20 Oct

It has already been well established that Andrew Wakefield was employed by Dawbarns, a lawfirm working with families bringing forward claims of vaccine damage from MMR. Brian Deer made this clear in his investigative reporting starting in 2004.

Even with that, I must say I was surprised and dismayed to read it again and in much greater detail in the GMC transcripts.

Mr. Wakefield has asserted over the years that the children for the Lancet study came through “formal channels”. He denied the possibility of litigation bias in a letter to the Lancet.

Amongst the myriad questions left open is why did a group of parents of disabled children seek out Mr. Wakefield’s team when that team had no particular expertise in autism. Why did families from all over the U.K. and beyond seek out the Royal Free Hospital?

There is evidence elsewhere in the transcripts of Mr. Wakefield’s direct involvement with recruiting some children for his study, but here we can see how the law firm was actively recruiting children, and that Mr. Wakefield was aware of this.

For example, here is a section from the transcripts from day 3 of the hearings. This is where Ms. Smith was laying out the case against Mr. Wakefield before testimony was started.

Let’s first put the following letter into perspective on time. The letter is from August 1996. 1996 was two years before the Lancet paper was published. Earlier that year (in February) Mr. Wakefield had agreed to work as an expert in the MMR litigation. The Fall of 1996 was when the Lancet 12 children were seen at the Royal Free. After this initial group of children, more (over 70 total) children were seen at the Royal Free for suspected Gi complaints and regression.

Ms. Smith’s comments are in bold. The letter from Mr. Barr are blockquoted.

If I can just read through it, this is a letter to Dr Wakefield from Mr Barr, the solicitor for the claimants:

Dear Andy

I refer to the telephone message left … and I am writing to confirm that at long last the Legal Aid Board has now given authorisation for the pilot study. The limit is £55,00 which does include the setting up costs.

I think we need to have a meeting about the mechanics of running the study because obviously we both have different roles to play and we also need to make sure that the investigation is as effective as possible both from your point of view and ours.

As I mentioned on the telephone the only slight cloud is that the Legal Aid Board rather hoped that within the £55,000 you would be able to include preparing us a written over-view in relation to vaccine damage. We have discussed this and I don’t know whether it is impertinent to suggest that you should do it within that funding bracket.

We also need to make sure that cases are properly selected for the pilot study. Obviously only legally aided children can be included (we have details of cases where legal aid has either not been granted or has not been applied for). Again a meeting might help to sort those out. For all the cases that we have obtained legal aid we have already put in hand obtaining records. In many cases we already have the complete set.

I assume that for the purposes of the pilot study you would like us to supply a full set of medical records and as much information about the cases as you can get hold of.

Then there is reference to two of the vaccine support groups who were concerned about a forthcoming MMR campaign, and:

“When we meet I would like to discuss with you and perhaps engage in further correspondence with Dr Salisbury/The Committee on Safety of Medicines”,

and it then goes into some details and requests information about the vaccine trials.

That letter is followed on in terms of tracing the story through. That is in August 1996 and in September 1996 Dr Wakefield is referred to in another of the newsletters that I have already gone to, again produced by the solicitors in the MMR litigation and again sent to Mrs 12. That is at page 189.

There is so much in this letter of interest, but I will pull out one fact: Mr. Barr was sending newsletters out informing people about the work starting at the Royal Free, including “Mrs 12”, the mother of child 12 of the Lancet study.

There was certainly an effort to recruit children to Mr. Wakefield’s team, and Mr. Wakefield was aware of this.

Mr. Wakefield has asserted that none of the children in the Lancet study were involved in litigation at the time of that research. I do not know what criteria Mr. Wakefield uses for “involved in litigation”, but it is clear that at least one (and from other evidence it appears more like 4 or five) of the Lancet 12 were working with Mr. Barr and his lawfirm at Dawbarns at the time of the study.

Ms. Smith also discussed a September 1996 newsletter from Dawbarns. This was at the same time that Mr. Wakefield was applying for ethical approval for his study at the Royal Free. Here is a section of that newsletter:

Autism and inflammatory bowel disease

A substantial number of children referred to us are suffering from chronic stomach problems and/or have developed autism-like symptoms. Our own researches indicate that these two conditions may well have been caused by the MMR/MR vaccines and that they may well be linked.

We are trying to put together as much information as possible about the apparent link between these two conditions and the vaccines. If you have any information, or know of other families with children who have one or other of these conditions (or both) following vaccination we would be very interested to hear from you. If your child has the condition(s) and you have not yet received the fact sheet produced by Dr Andrew Wakefield, do contact us.”

It was no coincidence that the children reported in the 1998 Lancet paper claimed regression, GI complaints and many blamed the MMR vaccine.

Was there “litigation bias” and a strong measure of self-selection in the Lancet 12? Absolutely. Was Mr. Wakefield aware of this? Yes. Did he make this clear to the public, or even his own colleagues? No.

And we have yet to discuss what active role Andrew Wakefield himself took in recruiting study subjects to the Royal Free.

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