More presidential autism politics

23 Oct

I don’t know how things work in the U.K., but in the U.S. there is a long tradition of giving the Vice President a special role. The VP gets to say the the controversial things the president wants to try as a “Trial Balloon”.

You see, people in America vote against candidates as much or more as the vote for candidates. Every time a candidate opens his or her mouth with a clear statement, he turns some people off. If Candidate X says, “I’m all for fresh tomatoes” the people whose lives revolve around canned tomatoes immediately want to vote for Candidate Y. (to use a silly example).

The reverse doesn’t work. Candidate X may not really collect as many “Fresh Tomato” voters as he lost other voters.

Take a look at the early polls for any office. Often you will see something like, “Well, if McCain runs against Clinton, he is shown to lead by 5%, but against an un-named democrat, he would lose by 5%”.

American’s love hypothetical “un-named” candidates. We don’t have anything to hate.

That’s where the VP comes in. The VP can say the more controversial things. Americans who like the idea will say, “Dang, that team is doing what I want!”. Conversely, others will say, “Well, I hate the VP, but I vote for the president”.

See how that works?

Well, I bet you know that I’m getting around to the McCain/Autism question. Since the debate, he’s pushed the idea more. The title of a recent interview with the VP candidate Sara Palin tells a lot: Palin advocates for children with autism, no plan specifics.

Ms. Palin addressed issues brought up by Mr. Obama in the recent debate: how to fund autism research and have an across the board spending freeze. Ms. Palin noted:

“We want to give every child a chance,” Palin told News 4’s Shelby Sheehan in an exclusive interview during a campaign stop in Reno on Tuesday.

Palin’s running mate John McCain said in the third and final presidential debate, “We must find out the cause of autism and help those families dealing with autism.” McCain also promised to freeze all unnecessary spending in the federal budget.

Palin says it’s possible to do both.

For the moment, let’s compare this to what Mr. McCain said at the debate:

OK, what — what would I cut? I would have, first of all, across-the-board spending freeze, OK? Some people say that’s a hatchet. That’s a hatchet, and then I would get out a scalpel, OK?

Notice that the current statement is “unnecessary” spending now, but it was all spending a week ago?

Also in the debate, Mr. McCain said:

The mayor of New York, Mayor Bloomberg, just imposed an across- the-board spending freeze on New York City. They’re doing it all over America because they have to. Because they have to balance their budgets. I will balance our budgets and I will get them and I will…

So, a few days ago, it was an across-the-board spending freeze, with extra cuts via scalpel. Now, autism is going to get extra funding by diverting funds cut from other programs.

“There are a lot of wasteful expenditures in the federal (government),” Palin said. “Let’s get rid of those and put them into strengthening NIH (National Institutes of Health) and these other areas where we can help our kids with autism.”

Palin did not name any specific expenditure she wanted to cut in favor of funding for autism research or services, nor did she name what specific programs she’d like to fund in order to help those families.

That sounds good. But, that is a VP message and it doesn’t have any firm commitments.

The McCain campaign also talked about autism in an interview on FoxNews. The interview was with Cindy McCain, John McCain’s wife (and potential first lady). She noted:

…you know, obviously, autism has been on his agenda for a while.

But, again, not much of a commitment. And, it’s too similar to a VP comment.

Well, if these are trial balloons–here’s a respnse: Mr. McCain, I think it’s great that you have autism on your agenda. Either as president or as a senator, you will be in a great position to really help out. But, when I search your website for “autism” I get one hit:

Need to find out what the cause of autism is. We have to put a brake on increasing incidence of autism in America. That has to be highest priority. This will place a very dramatically increased burden on special education programs. I would fully fund special education program but also make sure teachers don’t just put discipline problems in those programs, that screening is a little more conscientious.

Now, I’m pretty sure I’ve seen more on your site in the past–I need to look harder. But it wasn’t much.

I like the suggestion above that you will fully fund special ed. Does this mean having the Federal Government fully fund IDEA? Because, that would be an increase in spending. An increase in spending to finally reach the level promised to special ed kids for decades, but an increase in budget terms.

That statement was a little too vague, and you made it before the “spending freeze” idea was a big part of your plan.

I guess what I’m saying here is: I want you, Presidential Candidate John McCain, to say, “I will support an increase in IDEA spending to match the commitment we have made as a people”. I’d like it if you said that would be a priority even if you remain a senator.

You see, I’ve been to enough IEP meetings to understand what a measurable goal is. I realize the difference between a vague commitment and hard goal.

I want something I can quote and fax and email to your office (be it White House or Senate) and say, “what is happening with this?”

I am not a one-issue voter. But, this is an issue I am watching closely. How it is handled will tell a lot about the type of President you might be. A candidate who offers vague promises is not what I want, on any issue.

As I said, I found scant information on autism on your website. Here are links from Mr. Obama’s website:

Here’s a statement on Autism Spectrum Disorders. Yes, I want Senator Obama to tighten up this language:

Obama is a strong supporter of the Individuals with Disabilities Education Act (IDEA) and supports full federal funding of the law to truly ensure that no child is left behind.

Luckily, elsewhere on his website, he says,

They will fully fund the Individuals with Disabilities Education Act to ensure that no child with ASD or any other disability is left behind.

And also,

President Obama will fully fund the Combating Autism Act

Those are real statements. They are something measurable. They call out the specific projects by real name and they don’t just “support”, they say “fully fund”.

I will ad that I like the fact that autism isn’t a single issue to Mr. Obama’s campaign. It is part of a broader policy on disabilities.

Now, I am old enough to know that promises made and promises kept are different things entirely. But, as I’ve said above, when I call your office in a year, I’d like to have something substantial to quote to hold you accountable. I don’t want to call and have this conversation:

Sullivan: You said you’d support funding IDEA.
President McCain’s staffer: Of course we support that!

So, a few suggestions (for both sides).

1) Make real commitments
2) Have the presidential candidate say them (not the VP, not a spouse)

but, mostly

3) Follow through.

We as a community have seen promises un-kept since long before I was a member. Don’t promise what you can’t keep. Not to us. Tell the trial lawyers, the oil companies, other groups things that you may or may not be able to actually accomplish. Don’t do that to people with disabilities.

Memo to Bob and Suzanne Wright

22 Oct

Bob, Suzanne – welcome to the UK.

I read your interview in the Telegraph. Fascinating. I’d like to highlight a few points.

“We want the best minds in the world to focus on this,” says Wright. “And we want the UK to be a big player in the global movement.”

“Until now it seems to have passed under your radar,” adds Suzanne – a statement that could anger all the British activists who have been working in the field for decades.

Um yes, just a bit. You see, in the UK, we already have some of the best minds ‘working on this’.

And ‘passed under our radar’? One could assume that Suzanne Wright has a monumental gift for saying stupid things after reading that. Maybe she hasn’t heard of the National Autistic Society a parent founded organisation formed over 40 years ago in 1962. Maybe she hasn’t heard of it because it doesn’t cry about ‘the children’ all the time and because it recognises the fact that autistic people have a voice (no autistic people are on AS board whereas autistic people are represented at many levels of NAS) and are – in the main – adults and it tailors its aim appropriately. Whilst NAS is far from perfect it has learnt the necessity to respect autistic people for the fact that they are autistic. Something the Wrights aren’t even close to. If the Wrights want to get any traction in the UK they need to shut their mouths and listen to NAS.

And then the anti-vax rhetoric starts, giving lie to the idea that AS are pro-vaccine.

….The last vaccine Christian had before he regressed was MMR – that’s why my daughter concentrates on that. I don’t know whether his autism is linked: it was certainly coincidental, what we don’t know is if it was causal. Nor do we know whether the thimerosal (the mercury-based preservative used in vaccines) is a factor, although mercury is clearly poisonous. Governments want to run from that issue but they should become more aggressively involved. They have to follow children through to see if there are any effects.

Well Bob actually we do know if his MMR shot was causal. It wasn’t. We also do know if thiomersal is a factor. It isn’t.

I personally haven’t seen a government ‘running from the issue’. I’ve seen government spokespeople repeat what science tells us. There is no link. No matter how much people think there is or believe there is, based on the available evidence, there isn’t. Science has followed through to see if there were any effects. There weren’t. How much clearer does it need to be Bob?

Virginia Bovill perfectly sums up my own concerns about you and your wife’s organisation:

The other major source of concern is Wright’s focus on prevention and cure. This upsets Virginia Bovill, founder of TreeHouse, the charity hosting the lecture, who is currently studying for a DPhil on whether the quest to prevent and cure autism is morally justified. “Where would prevention lead – to ante-natal testing and abortion?” she asks. “The thought of a world without all the people I have met with autism is not a world I would want to live in. I would rather people said: ‘They are here, autism is here – how can we help these children fulfil their potential; how can we support their parents?'”

This is a very British pragmatism. The issue is right here and needs to be addressed. Do you want to help or do you want to force through your own beliefs simply because they are your beliefs? If the latter please just hop back on the plane. We don’t want you here.

Every Child By Two: Oprah, Jenny McCarthy et al

20 Oct

An email from Amy Pisani – a thoroughly charming lady who runs the organisation Every Child By Two – made me nod appreciatively today. I’ll quote it in full:

It has been quite some time since Every Child By Two (ECBT) has asked you to take action on an issue related to immunizations. I write to you today with an urgent request for your assistance in reaching out to the Oprah Winfrey Show to urge that she dedicate a show to the science behind the question of whether vaccines cause autism.

More than fourteen credible studies have been conducted worldwide exonerating vaccines and yet the media and entertainment industry continue to frame this as a debate. ECBT and our public health partners have reached out to Oprah’s producers countless times without success. However, I recently had a lengthy conversation with one of the producers who recommended that we initiate a letter writing campaign by commenting within the Oprah.com feedback section of the website. This information is tabulated to determine whether there is enough interest to conduct follow up shows.

I urge you to take five minutes to fill out the Oprah Winfrey Show online form by following the link below. In your comments, please request that Oprah invite credible scientists and/or physicians to explain the science of vaccines to her viewers. We also would like her to invite parents who have suffered the loss of a child from a vaccine-preventable disease, and a parent of an autistic child who can speak on behalf of the many families that are frustrated over the continued focus on vaccines and their supposed link to autism and the therapies that focus on “repairing vaccine damage”. Please relate any personal experiences you may have with vaccine-preventable diseases or autism. In addition, please refer the Oprah Winfrey Show to Amy Pisani, Executive Director of Every Child By Two, for any follow-up questions.

And finally, please forward this to your family and friends and request that they also reach out to the Oprah Winfrey Show.

https://www.oprah.com/ord/plugform.jsp?plugId=215

An excellent idea. I’d like to see a show that mirrors the one sided show that Jenny McCarthy recently got – the one where she was free to spout off her latest game of ‘cure the Evan‘ (he’s cured, no he’s not, yes he is….) but this time with a careful step by step walk through the science that:

…is largely complete. Ten epidemiological studies [plus two clinical ones and the testimony of Stephen Bustin] have shown MMR doesn’t cause autism; six have shown thimerosal doesn’t cause autism; three have shown thimerosal doesn’t cause subtle neurological problems; a growing body of evidence now points to the genes that are linked to autism; and despite the removal of thimerosal from vaccines in 2001 [and the 10% drop in MMR uptake between 1997-2007], the number of children with continues to rise.

– Autism’s False Prophets, Page 247. Dr Paul Offit.

Compare this hard, clinical, transparent (and thus independent) science with Mother Warrior Jenny McCarthy’s recent evangelical call to arms:

“I made a deal with God,” she explains. “I said, ‘You fix my boy, you show me the way and I’ll teach the world how I did it.'”

Hallelujah! Or whatever. To misquote the Pythons – she’s not the Messiah, she’s just a very silly girl.

Please act on Amy Pisani’s request – do it right now.

The next mito-autism case?

20 Oct

It’s been nearly a year since the first autism/mitochondria case was conceded. The question of mitochondrial dysfunction and autism has evolved significantly in the minds of the public and insiders in that time.

Shortly after the concession, Tom Powers, lead attorney for the petitions was asked

.”..whether this was a possible break in the case, he replied that the particular case dealt with a claimant who had a diagnosed mitochondrial disorder. As a result, it probably won’t have much of an effect on the other cases.”

It wasn’t really on the radar for the Petitioners.

But, that was in December of 2007. In February of 2008, the concession document was leaked, followed by TV, online and print news-stories on the topic. Coincidentally, mitochondria and autism has changed from not “much of an effect on the other cases” to some people claiming as much as 1/2 of the Autism Omnibus cases being associated with mitochondria.

We’ve seen one Omnibus test case removed from the Omnibus because, the parents claim, the child’s case needs to be argued as a mitochondrial dysfunction case. We’ve gone from diagnosing mitochondrial dysfunction involving a difficult task of many tests and specialist’s opinions, to the point where David Kirby, a blogger, claims to be identifying mitochondrial dysfunction based on parental reports. We now have self-taught “experts” ready to answer questions on discussion boards about mitochondrial disorders, one of the extreme specialties of medicine.

While this is all lamentable, we now have the first “test case” for the mitochondrial autism notion, post concession. A family is arguing mitochondrial disorder (or an oxygen depletion disorder).

The case has gone through the first steps in the Court of Federal Claims (the “vaccine court”). The case hasn’t concluded, but a decision has been published. To summarize:

First, note that the parents are representing themselves, it appears. The decision notes:

On August 29, 2008, petitioners filed a Reply to the Order, making two assertions: (1) [The child] suffered from a mitochondrial disorder and oxygen depletion disorder which a later vaccination significantly aggravated, leading to autistic like symptoms (somewhat similar to the Hannah Poling case that respondent agreed to compensate); and (2) the vaccinations which [the child] received caused him mercury poisoning from thimerosal or ethyl mercury (which is the subject matter of the second round of autism cases in the Omnibus Autism Proceeding, the first round of cases having to do with MMR and autism).

Tthey seem to be both arguing the mitochondrial disorder idea and the Omnibus thimerosal theory. In support, they gave no expert medical reports. Instead, they submitted a single paper (which presumably is supposed to cover both, very different assertions):

by D.S. Baskin, et al., entitled “Thimerosal Induces DNA Breaks, Caspase-3 Activation, Membrane Damage, and Cell Death in Cultured Human Neurons and Fibroblasts,” published in 74 Toxicological Sciences (2003), available on the internet.

That’s really thin evidence (as discussed at some length by the Special Master). Some sort of expert report should link the theory to the specific child. The parents state:

They have not filed a medical report in support of their assertion of significant aggravation of [the child’s] autistic like disorder, claiming that no doctor would risk criticism from the medical community by providing such a report.

Anyone want to volunteer some names of people who would risk the criticism?

But, seriously, diagnosing a mitochondrial disorder is not a simple task. This isn’t something a parent (or David Kirby) can do by looking for similar markers to another case. Heck, it isn’t as though all the biomarkers for the conceded case are universally accepted by mitochondrial experts.

With such little support for the case, the Special Master was forced to conclude:

Petitioners have still not proved their assertion of significant aggravation.

Basically, the decision ends with a statement that the family has not made its case, but they have a chance to come back with a status report as to what their intentions are.

They have already signaled a possible intention:

Petitioners express an interest in suing civilly.

This case is built on even thinner evidence than most internet-discussion-group claims. At least with those, there are challenge tests, porphyrin tests or some other questionable test, together with the opinion of the doctor who ordered the questionable tests to support an idea of “mercury poisoning” or some such diagnosis. But here, we seem to have: the child is autistic, therefore it is mercury and/or mitochondrial disorder aggravated by vaccines.

The Special Master gave the family information on how to contact a lawyer familiar with the vaccine court. I hope, for their sake, they did. I doubt it will have much of an effect on their case, but at least they would have some advice as they move forward to civil court–where the expenses will be charged to the family.

Savage Autism

19 Oct

So Denis Leary, one time comedian and currently insulting disabled children, has joined forces with that other prime idiot Micheal Savage to call autistic kids dumb:

There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can’t compete academically, so they throw money into the happy laps of shrinks.

So, whilst I wipe away the tears of mirth (and only so recently after I had to sew my head back on after I laughed my head off at Tropic Thunder) from my eyes I think to myself – what is it about autism that attracts so much ire from comedians? Well, if I listened to silly people like Ginger Taylor, I’d think it was the CDC’s fault:

It is AAP and CDC’s job to investigate illness and educate the public on said illnesses, but every time a health professional gets on TV and utters the ignorant words, “Mysterious disorder, no know cause or cure” they make one more Dennis Leary, one more Michael Savage…

Thats right, by telling the scientific truth, the AAP and CDC – not only evil promoters of the evil vaccines – also ‘make’ Micheal savage and Denis Leary say stupid things.

Newsflash Ginger – you just said a stoopid thing too. Nobody makes people like savage and Leary say these things. They say it because deep down, they really believe it. Just like Tom Cruise and the other idiot Scientologists really believe that autism doesn’t exist (despite them getting involved with DAN!), the likes of Savage and Leary really believe that parents like you and I _are_ lazy. And its nothing to do with vaccines and its nothing to do with causes. Its to do with lazy thinking.

Ginger goes on to ask:

Or are you perhaps hoping to be able to up the ante and replace the phrase “Refrigerator Mother” with the phrase “Münchhausen Mother”?

Newsflash Number two Ginger – some of your Mother Warrior friends are pretty close to that right now. Not that long ago I posted an entry that described parents chelating 13 month old babies. And here’s a snippet from another Mother Warrior:

My son is 6 and I have to hold him down for the IVs – we’ve done 10. Today he got poked 3 times and has purple hands from blowing veins.

Yummy.

Newsflash Number three Ginger. Although you firmly believe otherwise, there is no science to support the beliefs you have about vaccines and no science to support the ‘treatments’ these people are doing to their children. Without any sort of evidence at all what you and your fellow Mother Warriors are doing _is_ child experimentation. Maybe you should give some thought to the possibility that Savage and Leary are being fed by the endless stream of middleclass know-nothings who think that they know everything there is to know about vaccines? Just a thought

Anyway, I put together a little something for us all to get a little payback against the idiots in celebville. Enjoy

Jenny McCarthy and the law of unintended consequences

19 Oct

This video explains a consequence of Jenny McCarthy’s self-serving appearance on Oprah. The mom who made the video uses text to explain how she and her son listened to Jenny that day rave about how Warrior Mothers “fix” their autistic children. The boy deduces from this that since he is autistic and has a mother that perhaps his mother has already “fixed” him or maybe she will “fix” him in the future.

The mom realized that it wasn’t good for her son to see himself as a broken thing, or as a fixer-upper not quite good enough as is. The mom says she has decided to be a different kind of Mother Warrior now. She will continue to make sure her son gets the skills he needs to do the best he can. She will be one that fights for acceptance of her son and her family as they are.

I’m fighting for my son to be the best he can be…without being made to feel like there is something wrong with him being the way he is.

I would say this was an example of the law of inintended consequences. Jenny “Look at ME!” McCarthy’s statements are so often over-the-top, so shallow and ill-informed and so often self-contradictory. (What is it that cured Evan Asher this week? Diflucan for a raging yeast infection or just a few simple changes in diet and a few vitamins?) I believe she and her air-headed supporters can only make so many extreme and unethical comments about children in the national media before it starts to sink in to normal people that children are being spoken of abusively. I hope there will be a huge backlash because of Jenny’s exploitative, exhibitionist, anti-acceptance, anti-truth, anti-kindness, anti-child, anti-public-health putsch. I hope that backlash brings people to a point where they take a stand, visibly, and make declarations firmly on the side of autistic people as the mom who made this video did.

Thanks, Dinah M., for pointing out the video.

Sunday Solutions – No. 5

19 Oct

Another review rather than tutorial this week. This time its an idea that seems really stupid – until you actually need and use it, and then its invaluable.

Simply Checklists does exactly what it sounds like, it provides a well thought out set of checklists for just about every situation you may need one for – from getting married, to baby sitter information to stocking a first aid kit.

Now you’re probably thinking (like I did the first time I saw it) – this is stupid, who needs this? But believe me, when you’re trying to get organised and you realise you’ve forgotten a key piece of the puzzle, this site will help you.

Now, this site doesn’t help with _autism_ checklists but it does help you take care of everything else, leaving you free to concentrate on the needs of the autistic person in your life (even if that person happens to be you). And of course, nothing is stopping us, the autism community, from maybe creating our own version of this site.

McCain courts the autism vote

16 Oct

If you watched the U.S. presidential debates tonight, you heard the “A” word a few times. Yep, Autism.

Senator McCain, who tripped up early in the campaign by giving credence to the thimerosal debate (and, yes, tripped up is accurate since he backed away fast from that stance), is courting the Autism community’s vote.

In discussing his running mate’s credentials to be president (should Mr. McCain for some reason stop being president), Mr. McCain stated:

She’ll be my partner. She understands reform. And, by the way, she also understands special-needs families. She understands that autism is on the rise, that we’ve got to find out what’s causing it, and we’ve got to reach out to these families, and help them, and give them the help they need as they raise these very special needs children.

She understands that better than almost any American that I know. I’m proud of her.

I wish Mr. McCain had more contact over time with the disability community. “She understands that better than almost any American I know”…I guess since she has a child with special needs and a young relative with autism, she has some experience, but wouldn’t it be nice if Senator McCain knew someone in the autism research community? (a guy can dream, can’t he?)

Actually, I really liked the way Senator Obama brought this back to one of his themes in his reply:

I do want to just point out that autism, for example, or other special needs will require some additional funding, if we’re going to get serious in terms of research. That is something that every family that advocates on behalf of disabled children talk about.

And if we have an across-the-board spending freeze, we’re not going to be able to do it. That’s an example of, I think, the kind of use of the scalpel that we want to make sure that we’re funding some of those programs.

For those who didn’t watch, there was discusssion earlier in the debate about a Senator McCain’s proposal for a spending freeze. Senator Obama made the point clear: cut smart, not blindly.

That said, I also liked how Senator Obama brought in the entire disability community. Yes, it was still child focused, but he did talk about “other special needs”.

I like how he sees research as a priority.

Senator McCain later stated:

And I just said to you earlier, town hall meeting after town hall meeting, parents come with kids, children — precious children who have autism. Sarah Palin knows about that better than most. And we’ll find and we’ll spend the money, research, to find the cause of autism. And we’ll care for these young children. And all Americans will open their wallets and their hearts to do so.

I wonder how many autistic adults were in his audiences? I wonder how many people with other disabilities (or family members with other disabilities) were in the audience.

Senator McCain may have thought that he was winning my vote, but he just lost it. Yes, disability issues, especially autism, play a role in my choice. But, this looks too much like pandering to the vaccine-autism crowd while doing the politician’s two-step around the sticky details.

I.e. it was “let’s use code words about the epidemic and vaccines to gather votes”.

I really hope I am wrong, but that was my read.

Senator Obama’s response really did speak to me, though. Focusing on funding research–and research for other conditions besides autism–spoke to goals that match mine, rather than an attempt to buy my vote.

The Los Angeles Times has a full transcript of the debate already.

Also, AutismStreet gathers his thoughts and types faster than I. There is a good treatment of this subject there.

here’s a taste:

She understands that autism is on the rise? Really? Can she clearly convey the distinction between more diagnoses, and an actual increase in prevalence? Does she understand diagnostic substitution? What about the broadening criteria and the changes in the very definition of autism? Does she really understand this? Or, is McCain pandering and simply parroting anti-vaccination and anti-autism advocate fundraisers’ “autism epidemic” rhetoric?

[added material]

I want to repeat: I really hope I am wrong about Senator McCain. Even if he loses the presidential bid, he is a Senator and someone we need to help in the probable lean years ahead–and beyond.

Creativity

15 Oct

I was motivated.
And I was creative. I was in a process of creating a world record.
My Creativity had nothing to do with aesthetic taste that expects an applause or get some kind of price tag attached to it.
My creativity was provoking much stir and turbulence rocking all the boats that came in my way. I was taking big steps.
I was taking big steps as I was trying to test how far my longest footstep would and could reach. My footsteps were breaking their own created record that they made just moments ago. It was not my concern where I was breaking my record and creating a new one. I was in the middle of my classroom and I was supposed to complete some work sheet that was lying on the table like an anchored boat in the midst of a very turbulent sea. Creativity can happen anywhere. I was that hurricane tossing those dolphins up and down the air to sea and back to air again right under the suspicious gaze of the whales.’All will get a chance.’
I was walking through the class around those desks and chairs, knees and elbows measuring my footsteops breaking record after record.
“Can someone please stop Tito?” Who knows whose voice it was!
Wasn’t that unjust? I have seen all kinds of world records getting created. Longest nail, longest mustache, longest stare, longest time under water and longest time hanging upside down. Creative people fill the wonderful world with all kinds of presentations that are displayed in world record books.
Just because I was in a classroom did not mean someone should stop me from being creative.
Someone did stop me.
So I had to postpone my world record for a new moment. I came back to the anchored boat. The whales could have their time later.

–

Tito Rajarshi Mukhopadhyay

Tags:

The Truth About Andrew Wakefield

14 Oct

Regular readers will know that an eminent UK scientist writes the occasional guest blog piece for LB/RB. Here is his piece in the wake of the the Lipkin/Hornig study and the amusing claim that it vindicates Wakefield. Enjoy – Kev.

A scientist who has followed the Wakefield saga from the start sets the record straight.

According to recent newspaper reports Andrew Wakefield is planning to publish his account of the MMR/autism controversy next year, under the title The Lesser Truth. He is currently facing charges of gross professional misconduct at the General Medical Council (the case is expected to conclude in April 2009). Meanwhile, Wakefield and his supporters continue to claim that his research is valid and continue to smear the investigative journalist Brian Deer who exposed the conflicts of interest and dubious ethics – as well as the junk science – behind the claims of a link between MMR and autism. But it was Wakefield who was obliged to back down in court from his libel allegations against Deer. Wakefield was unable to contradict Deer’s claim that he has been “unremittingly evasive and dishonest in an effort to cover up his wrong-doing”.

Here are some truths about Wakefield and his research that may not find their way into The Lesser Truth:

Wakefield was never a respected researcher. His first foray into the Lancet was a controversial paper in 1989 saying that Crohn’s disease was due to problems in the blood supply to the gut (vasculitis). But this was wrong. In the early 1990s he was funded by pharmaceutical companies for research along the same lines, mostly in animal models, and produced a series of low-impact, forgettable, papers.

Wakefield first courted notoriety in 1993 when he claimed to have identified measles virus in Crohn’s disease gut tissue. Coincidently, measles virus can cause vasculitis so it is easy to understand how, from 1989 onwards, Wakefield had to find measles in Crohn’s. We now know this result was not possible: there is no measles virus in Crohn’s disease and the antibodies Wakefield used were not specific for measles either. In Wakefield’s own lab, a good molecular biologist, Nicholas Chadwick, could not find measles in Crohn’s by sensitive molecular techniques. However, Wakefield said he could find measles, using crude techniques using flawed reagents. Suppressing data which ruins your hypothesis is scientific fraud.

In February 1996 Wakefield cooked up the idea that MMR was involved in autism with the solicitor Richard Barr and parent activist Rosemary Kessick. He wrote a research protocol to get into the children’s colons to look for measles virus and gut damage, and applied to the Legal Aid Board for £55K.

By October 1996, the Royal Free team had scoped enough children to provide Wakefield with tissue samples so that his technician could look for measles virus in the guts of autistic children by immunohistochemistry. This was clearly research, without clinical or ethical justification.

By spring/summer 1997 Wakefield had enough cases and enough creative data for his story. He believed that autistic children had gut inflammation and most importantly, he believed that he had discovered the cause – measles virus persisting in the gut from MMR. Wakefield first tried to get this study published in Nature but it was rejected.

Towards the end of 1997 he sent an abstract of this work to be presented at Digestive Diseases Week in the USA in May 1998. He also submitted two papers to the Lancet. The first was accepted and published as the now notorious February 1998 Lancet paper. The second, the study claiming to have identified measles virus in the gut by immunohistochemistry, was rejected. To see Wakefield’s pictures of measles virus in the guts of autistic children go here (slides 37 and 38). The second paper was never published and has now mysteriously disappeared, although Wakefield showed it all over North America for years.

In 2000, Wakefield published a larger series on “autistic enterocolitis”, the new disease he claimed to have identified (Wakefield et al 2000 Enterocolitis in children with developmental disorders. American Journal of Gastroenterology 95: 2285-95). Analysis of the data in this paper has revealed that it was a scam: autistic children do not have a chronic inflammatory bowel disease. Normal findings in children were called pathology, pathological results were re-examined and sexed up, and new abnormalities were manufactured, all to make it appear that these children had gut inflammation (MacDonald TT, Domizio P. Autistic enterocolitis; is it a histopathological entity? Histopathology. 2007 Feb;50(3):371-9).

As the litigation in the UK began to heat up around 2000, the defendants (the MMR manufacturers) started to ask simple questions, such as, where is the paper which shows measles in the gut of autistic children? This was part of the MMR/autism story that was rejected by Nature and the Lancet. Who knows why Wakefield never published it? Maybe he realised it was junk since at the same time his identification of measles virus in Crohn’s disease had unravelled. Maybe he knew that the experts for the defence had looked at the data and the methodology and shown it was junk.

Wakefield now hooked up with Dublin pathologist John O’Leary. O’Leary was supposedly an expert in an unsound and discarded methodology called in cell PCR, which he claimed allowed him to amplify measles genetic material in tissue samples, in this case, from the guts of children with autism, and identify its cellular location. He also set up PCR techniques to amplify measles from samples of gut. The O’Leary lab’s studies of Wakefield’s gut biopsy specimens were published in another notorious paper (Uhlmann et al. Potential viral pathogenic mechanism for new variant inflammatory bowel disease. J Clinical Path: Mol Pathol 2002;55: 84-90).

In his testimony to the Omnibus Autism proceedings in Washington in summer 2007, London-based molecular biologist Professor Stephen Bustin showed the utter incompetence of O’Leary and his lab. He revealed the fact that a result was called positive if the sample contained measles virus but no DNA (a biological impossibility). He also revealed that if they analysed the same autistic sample 6 times and got a positive once, the patient was deemed to be positive, even though they were also getting positive measles results out of samples of pure water.

It seems that O’Leary has belatedly seen the error of his ways: in the recently published Hornig study, his lab – in common with other labs in the USA – failed to find measles in samples from autistic children (Hornig et al 2008 Lack of association between measles virus vaccine and autism with enteropathy: a case-control study. PLOS One 3(9):e3140). The attempts by Wakefield and his acolytes to claim that the Hornig study vindicates the Uhlmann paper are preposterous. Distancing himself from Wakefield as fast as is possible for any man of 20 stone, O’Leary cleaned up his lab and did things properly.

A review of the career of Andrew Wakefield is a trawl through the underbelly of science. Wakefield did not do experiments to seek the truth – he did experiments to confirm his own beliefs. He produced junk science for over a decade and did immense damage to patients with Crohn’s disease, and autistic children and their parents. Hopefully the GMC will nail the charlatan, and show some sympathy for the Royal Free clinicians who thought Wakefield was honest. The Andy Wakefield show has now moved to the USA where he can get the attention he craves and he can play the role of the selfless seeker of truth whom the establishment had to silence. Being a victim is a good career move for him. It will help Thoughtful House sell junk therapies for autism to desperate parents and allow Andy to live in a really big house, where he can entertain his showbiz friends. He really wanted to be a famous scientist, but he was rubbish at that, so he had to become (in)famous by other means.

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