Archive by Author

Autistic Voices Not Saying What We Want

21 Feb

Yesterday I linked to a story about Carly Fleischmann, a 13 year old autistic girl who, up until recently has been uncommunicative.

All of a sudden these words started to pour out of her, and it was an exciting moment because we didn’t realize she had all these words,” said speech pathologist Barbara Nash. “It was one of those moments in my career that I’ll never forget.”

I’ve caught some email flak from a few people in the neurodiversity community for linking to this story. Mainly because of the closing words from Fleischmann:

If I could tell people one thing about autism it would be that I don’t want to be this way….”

I can understand how people would be upset with Fleischmann’s opinion. Many autistic people have spent a long time trying to raise awareness of their lives as something that they are happy to have and happy to be autistic in. I consider it vital that autistic people know that too.

But.

These _are_ Fleischmann’s thoughts and opinions. We should not and cannot discount, ignore or attack them. We cannot pretend that they are not equally as valid as any other autistic persons just because we don’t like their message. To say that they are not valid is to take the exact same stance as those who claim autistic people cannot know their own minds. Fleischmann knows her own mind and – right now – she doesn’t like being autistic and wishes she wasn’t.

Maybe with age will come a new self-acceptance. Most teens are full of self doubt and lack positive self imagery and I doubt Fleischmann is much different than most teens. But we also have to consider that she _won’t_ change her mind and that she will join with other autistic self advocates who may wish for a cure. We have to ask ourselves difficult questions about the nature of our advocacy now. I will be quite open and say that if my daughter ever wishes for a cure then I will try and help her get it. I will disagree with her decision and feel sad that she has made that choice – *but it is her choice* . Just as it is Fleischmann’s choice to not be happy with the fact she is autistic.

This is also why I am ambivalent about a cure. Whilst I do not think that a cure is a necessary thing for autistic people, I do believe that an individual has the right to do with their own bodies pretty much whatever they want. We have a society where men can become women and vice versa and no one aside from prigs and bigots object to this. This strikes me as the same. the issue with cure for me is that it must be very, very responsibly initiated. The issue of whether there will ever _be_ a cure is out of all of our hands. If a scientist wants to research a cure then they will.

We should – in my opinion – try and teach that there is nothing wrong with being autistic. Not that one cannot have a choice to not be autistic.

Rally at the AAP

21 Feb

From the Age of Autism:

They need to start listening to parents’ concerns and take them seriously,” said Amy Carson from Moms Against Mercury. She and cofounder Angela Medlin came all the way from balmy North Carolina to freeze in front of the AAP, abetted by TACA and NAA Chicago, led by Chapter Development Director Karen McDonough. This was their fifth rally outside the AAP, timed to greet employees arriving at work and remind them that thousands of American families believe vaccines have triggered an epidemic of autism and other developmental and chronic health disorders.

And here is the proof positive of the teeming throngs of ‘thousands of American families’.

rally_people.jpg

You can click the image to make it bigger. Sadly it doesn’t increase the amount of attendee’s.

Wakefield, Baird, Archives

20 Feb

This is a Guest Blogged post, written by an author with a keen interest in Wakefield related issues. My gratitude to Nigel for writing the post which follows.

Wakefield and his colleagues were fast off the mark (http://www.thoughtfulhouse.org/pr/020608.htm) to criticise the study by Baird et al which recently appeared in Archives of Disease in Childhood. This was a well conducted study which failed to detect measles virus (MV) or elevated measles antibodies in the blood of autistic children. There is a general feeling that even if the almighty Jehovah himself, collaborating with the top researchers at the Universities of Oxford, Cambridge, Harvard and Yale, and with an advisory board of all recent Nobel laureates in medicine, produced a negative study on measles virus in autistic children, Wakefield would still find flaws in the work; remarkably rich from the single largest purveyor of junk science in the last 20 years.

As a criticism of the study Wakefield states “It is a major error to have presumed that peripheral blood mononuclear cells are a valid ‘proxy’ for gut mucosal lymphoid tissues when searching for persistent viral genetic material” and later states “ We are increasingly persuaded that measuring things in blood many years down the line tells us very little about the initiating events in what is, in effect, a static (non-progressive) encephalopathy unlike, for example, subacute sclerosing panencephalitis, which is a progressive measles encephalopathy” .

The hypocrisy of this statement is quite breathtaking, but unsurprising from someone whose relationship with scientific honesty and integrity is somewhat elastic. For those who don’t have long memories, the first “alleged “ evidence of MV in autism came from Wakefiled’s collaboration with Kawashima where using standard methodologies which were highly effective at detecting MV laboratory contaminants, Wakefield claimed that blood cells from 3/9 autistic children gave positive results ( Dig Dis Sci 2000 45:723-9). This paper formed a key part of the UK MMR litigation from 2000-2003 driven by Wakefield himself until it was mysteriously dropped from the final claimants witness reports by Wakefield himself. Perhaps the realization that blood is a poor proxy for gut came to him in 2003, or more likely, that he knew the Kawashima data were junk and would not stand up in court.

Even more staggeringly, the vast majority of samples from autistic tested for MV by O’Leary in the Unigenetics lab in Dublin were from blood; including the now infamous blood samples taken from healthy children at Wakefield’s own child’s birthday party. Steve Bustin in his testimony on the US Cedillo case comprehensively shredded all of the work that came out of that lab. All of this data on blood has never appeared in the public domain although the junk science on MV in the gut did appear in the Uhlmann paper, in a low impact factor journal which promptly rolled over and died.

As always however, you cannot believe anything Wakefield says as being scientifically valid. In the blood there are cells which are representative of the gut lymphoid tissue. This is very well established and non-controversial. When T and B cells are activated in the gut associated lymphoid tissue, they acquire the alpha4beta 7 integrin and migrate via the mesenteric lymph nodes, and the thoracic duct into the circulating blood and then home back into the rest of the gut using the mucosal addressin, MAdCAM-1.. This happens in all healthy people constantly and it is possible to identify these gut-homing cells in blood. Since Wakefield claims that MV persists in the allegedly large lymph nodes in the gut wall, cells should be infected with MV at source and carry the virus with them into the blood. So come on Andy, with O’Leary’s supersensitive PCR, you should be able to detect at least some of these cells migrating to the gut via the blood. After all, the PCR is so sensitive it can detect MV in samples of distilled water, now that is really amazing!

I suppose one should always rejoice in the repentance of a sinner, and if Wakefield has now come to the conclusion that blood is not a proxy for gut lymphoid tissue, we should be happy he is now happy to recant on all his previous claims about blood cells being positive for MV in autism. I have a sneaky feeling however that this is just another “wriggle” to keep the show on the road. If one of his acolytes claims to find MV in blood of autistic children, you can bet that blood will once again become a valid proxy for gut lymphoid tissue.

New Stuff

19 Feb

Couple of bits and bobs – two new pages on the site, both at the top. ‘Stuff’ takes you to some downloadable goodies for your browser and/or blog. ‘Timeline’ takes you to a timeline (oddly) of events surrounding the vaccine/autism hypothesis.

Enjoy.

In other news, the AAP Day went well yesterday. Along with the 60+ emails I got to send on to Dr Minshew last week, over a dozen blogs, as well as mine, posted about the AAP thing:

Marla Baltes
One Dads Opinion
Telstra
RunMan
Mom Not Otherwise Specified
Whiterer on Autism
Club166
Autism News Beat
Respectful Insolence
AutismVox
Maternal Instincts
Good Math, Bad Math
Grey Matter/White Matter
Aspie family
Terra Sigillata
Andrea’s Buzzing About
Mike the Mad Biologist
I Speak of Dreams

Its good to see the autism, autistic and science blogging communities getting together on this issue.

Email From JB Handley

19 Feb

From: J.B. Handley”
to: kevleitch@gmail.com
date: 19 Feb 2008 03:40
subject: Fair warning

Kevin:

As of this morning, I have retained counsel with offices in London and Birmingham to monitor your blog closely.

I have run a highly ethical business for 12 years. I have been scrutinized by the most sophisticated investors in the world and now manage more than $1 billion of their capital. My business dealings have met the highest ethical standards at every turn.

I will defend any attempt by you to sully my reputation in the business world with whatever resources are necessary to do so.

I do not think this is a great use of your time. But, if you decide it is, so be it. As you know by now, I never back down from a fight.

I have no interest in ever writing about you in the public realm nor having any sort of interaction with you whatsoever. However, if you choose to provoke me, as you recently did, I will respond.

I would be more than happy to move on and never interact with you again. It’s up to you to decide how you would like our future interaction to look. As I have said many times, my gripe is not with you and I have no interest in fighting with other parents of autistic children, we all have enough on our plates.

J.B. Handley
Managing Director
Swander Pace Capital

What follows is part of my response.

I have absolutely no interest in your business dealings whatsoever. You can do whatever the hell you like. I hope your company goes from
strength to strength – or fails miserably – I don’t give a rats ass either way.

However, what I *am* interested in is your role in companies you sit on the board of who seem to have business interests very much at cross
purposes with what you advocate regarding the nature and cause of autism.

So if you think I’m going to be attacking the way SPC does business you can rest assured I couldn’t possibly care less. In fact if you think I’m going to be attacking SPC at all (or any subsidiary or related company) you can rest assured I won’t be.

What I might very well discuss however is your personal ethics in relation to the companies you sit on the board of and its my opinion that its *this* that is really worrying you. And worrying you to the point where you are attempting to strong arm me into not talking about it.

So – for now – any discussion regarding JB Handley, any links to joke websites is off-limits. I don’t have the money or resources of JB Handley.

I’ve disabled comments for this post but if you’re a blog owner discussing this, please let me know via email.

UK Libel Overview.
US Libel Overview.

AAP needs help of rational parents

18 Feb

As part of the welcome addressing of the needs and concerns of the real autism and autistic community in regards to science and as part of their efforts to address the pseudo-science and quackery of the anti-vaccine agenda of certain autism related groups, the AAP are looking for rational parents to help them. I will certainly be offering my details should they be of service and I would urge any parent of an autistic child who is sick of hearing the unscientific and self serving agenda of such groups – groups who not only belittle autistic people but also gladly and readily place the health and well being of others at risk for absolutely no purpose to contact the AAP to offer their details also.

If you wish me to pass on your details, please either leave your name and email address in the comment section of this post, or email them to me or you can email the author of the AAP letter reproduced below.

Hello,

As part of our ongoing response to media stories regarding autism and vaccines, the AAP communications department is compiling a list of parents who support the AAP and are available for interviews. We are looking for two types of parents who could serve as spokespersons:

Parents of children with autism spectrum disorders who support immunization and who do not believe there is any link between their child’s vaccines and his or her autism.

Parents of children who suffered a vaccine-preventable illness. This could be a parent who declined immunization, whose child became ill before a vaccine was available, or whose child was ineligible for immunization.

We are asking for your help identifying parents who would be good spokespersons. They do not need to be expert public speakers. They just need to be open with their story and interested in speaking out on the issue. We will contact candidates in advance to conduct pre-interviews, to offer guidance on talking to reporters and to obtain a signed waiver giving us permission to release their name.

If a parent were placed on our list, we would offer their name and contact information to select media. We hope to build a list of parents from a wide range of geographical areas.

As the Jenny McCarthy and “Eli Stone” stories illustrate, this issue is likely to recur in the national and local media. The AAP is committed to doing all we can to counter such erroneous reports with factual information supported by scientific evidence and AAP recommendations.

The anti-vaccine groups often have emotional family stories on their side. The ability to offer a reporter an interview with a similarly compelling parent who is sympathetic to the AAP’s goals is a powerful tool for our media relations program.

Please contact me if you have any questions or to suggest a parent to interview.

Thank you,

Susan Stevens Martin
Director, Division of Media Relations
American Academy of Pediatrics

Lets take the example of just one worldwide disease that is vaccine preventable. Measles. In Jan 2007 The Guardian reported:

Between 1999 and 2005, there was a 60% reduction in annual measles deaths worldwide, from 873,000 to 345,000….

Fantastic news. But let that figure of 345,000 stay in your mind. That was how many people died all over the world from measles in 2005.

What do the countries most affected by measles think?

Urbain Olanguena Awono, Cameroon’s public health minister, described the fall in deaths as a spectacular achievement. “We are winning the fight against measles, which has long killed, sickened and disabled our children,” he said. “Our determination is stronger than ever to make measles history by further strengthening our measles control activities, working in concert with our international partners and setting aside resources.”

And who form part of their international partners I wonder? Merck? Wyeth? Bayer? SafeMinds? TACA?

There is even cautious talk of the possibility of ridding the world of measles, but while the eradication of smallpox was a triumph, the long struggle to eliminate the final reservoirs of polio in a handful of countries has shown how difficult it is to stamp out a disease.

And it is the same with measles – a handful of countries are holding back the eradication of measles.

Measles eradication could conceivably be stymied not by the developing world, but by dissenters in rich countries such as the UK

Thats right. My rich, upper middle class fellow countrymen and women. And their American rich upper middle class counterparts. Some of whom think the idea of AAP appealing for help to save kids lives is funny to the point of making jokes about the deaths of children:

From: krstagliano
Date: Feb 16, 2008 6:57 AM
Subject: [EOHarm] Re: JB, email from AAP looking for sick kids
To: EOHarm@yahoogroups.com

Can you imagine the ad campaign? Dad sitting in a confessional proclaiming his remorse and grief for not vaccinating his child, while the bell tolls in the background. Then a quick shot over to a small pink casket with a dolly on top and mother on her knees sobbing in front of the altar……[]

KS

Hilarious eh? Those whacky guys and gals at EoH really know how to make with the funnies.

Please don’t let this morally and scientifically bankrupt bunch of me-me’s keep hogging the media with their poor science. Support the AAP in the US and the NHS in the UK.

Autistic Guinea Pigs

15 Feb

During WWII a number of German doctors conducted painful and often deadly experiments on thousands of concentration and death camp prisoners without their consent.

……..

The second category of experimentation was aimed at developing and testing pharmaceuticals and treatment methods….

josefmengele.jpg

Source

Its always a dangerous thing to invoke the spectre of the Nazi’s. There is a profound risk of undermining or belittling the full horror of what happened in Europe during the second world war. I hope I don’t do that.

However, there are times that I simply know of no other way to illustrate the sort of things that one is sent from the various extreme biomed groups that exist on Yahoo and elsewhere. Who can forget Christine Heeren’s poor son being chelated with garlic and vinegar? Or the young mother being urged to chelate her 9 month old baby because she reported he was ‘smiling inappropriately’? And of course, there’s the death of Tariq Nadama.

All these things are simply experimentation on children, pure and simple. In goal and in safety they are no different that any of Mengle’s.

Does this mean parents are too blame? I don’t know. Is Heeren ‘to blame’ for what is being done to her son? No, I don’t believe so. The practitioner performing the treatment is. He (or she) is the one milking parents who believe they are desperate. They are the ones pawing over the traits of children for clues to a big payday.

So no I don’t think parents are to blame. However – what they are is _responsible_ . At some point one cannot keep saying ‘I didn’t know’. At some point it must filter through that injecting a mix of garlic and vinegar into a child isn’t going to do a damn thing. At that point, the parent becomes complicitly responsible. This is why I have such a hard time with the Nadama’s suing. I cannot believe that they didn’t know what they were doing was quackery. It was not a case like the one I touched on yesterday where parents were misled into a dangerous and nearly fatal procedure simply to further the beliefs of a quack.

There is a Yahoo Group – a very busy one – called MB12 Valtrex which discusses these treatment options for autism. Recently a mother to a two and half year old posted, listing what he was on and what he was like:

GFCF – CF since September ’07
Diflucan
Singulair
Glutathione Cream daily
B12 injections every five days, now going to every 3
Cod Liver Oil
Vitamin A
MultiFlora Spectrum Probiotics
Enzyme Complete DP-IV
Super Nu Thera
Vitamin C – 500 mg per day

I just look at him and he seems SO MUCH worse since we started this. I understand the yeast may be acting up and causing crazy behavior but he is unhappy, unhealthy looking. He has dark circles under his very tired eyes. His stimming and behaviors are just worse than ever. My husband and I keep looking at each other and wondering why it’s getting worse when we’re suppose to be on the right track now.

The past few days he’s had white chunks in his stool. Loser than normal stools, very light in color, almost like mustard with dark specs. DAN doc says yeast does NOT come out in poop … then what is it?

That’s a daily list of meds by the way.

Its unutterably depressing to read this sort of thing and know that this poor kid is being experimented on by the DAN! doc and this poor mother (new to the whole extreme biomed community) simply doesn’t have enough knowledge or energy to stand up to this quack.

The community elders of course – those who have become complicit over the years, those who should know better – encourage her to push on:

I know it’s hard to watch your child get worse when you’re trying so hard. Just keep looking and you’ll find the answers. It took me several months to realize that I needed to keep looking for answers. And please, talk to your own doctor about the trouble you’re having. I know how you feel, I’ve been there (and still am some days).

Just keep looking. Right. This from a person who admits she’s still pretty much where the original poster is.

An amazing veteran Mom told me once that when her kids react poorly, it just keeps her going because she knows she’s hitting something and, although it may not be the right supplement at the right time, she’ll eventually get it right.

She’ll eventually get it right. Yeah. And at what cost?

Does it strike no one else as odd that there _are_ all these ‘veteran moms’ _at all_ if this extreme biomed is supposed to work? Why are they still around and doing treatments and pushing experimentation? Surely their kids are ‘recovered’? Or maybe they’re like Erik Nanstiel’s daughter – still ‘low functioning’ after 6 years of extreme biomed and all this extremeism is there simply to assuage mum and dads self inflicted guilt – guilt carefully nurtured by the quacks lining their pockets at these parents expense and their kids childhoods.

Andrew Wakefield Responds

14 Feb

Andrew Wakefield has responded to the latest MMR Study showing no link between the vaccine and autism.

Just to recap, the latest Baird et al study looked at whether autistic kids and non-autistic controls showed any variance in their measles antibody response. They don’t.

The measles aspect of the MMR vaccine is what Wakefield’s hypothesis relies on. He says because its a live virus its casing gastric issues and then autism in some kids. This study looked to see if there was any evidence of measles-virus in the blood of these kids. There wasn’t. They looked to see if any of the autistic kids had evidence of gastric issues over and above the average. They didn’t.

But Wakers thinks this isn’t good enough.

The study is severely limited by case definition in the context of the crucial ‘possible enterocolitis’ group………….We have over the last 10 years evaluated several thousand children on the autistic spectrum who have significant gastrointestinal symptoms. Upper and lower endoscopy and surgical histology have identified mucosal inflammation in excess of 80% of these children. Almost none of these children with biopsy-proven enterocolitis would fit the criteria set out above………….The requirement for the current presence of these symptoms, for 14 or more days continuously, shows a singular lack of understanding of the episodic, fluctuating, and alternating (e.g. diarrhea/constipation) symptom profile experienced by these children

Wakers thinks that the criteria for defining enterocolitis that Baird et al used was too strict. He says it will occlude the group he’s identified.

He’s probably right. But not in the way he thinks he is. Could it maybe be that _his_ definition of enterocolitis is too slack? His definition includes:

In our experience, ASD children with histologic enterocolitis typically have 1 to 2 unformed stools per day that are very malodorous and usually contain a variety of undigested foodstuffs. This pattern alternates with that of “constipation” in which the unformed stool is passed after many days of no bowel movements at all, and with excessive straining.

With which he claims is ‘identified mucosal inflammation in excess of 80%’ of his kids.

Thing is, a PubMed search for ‘mucosal autism’ returns 20 results. Of which only one support the idea of inflammation – One of Wakers own papers. In fact the only person I could see using the term ‘histologic enterocolitis’ was (you guessed it) AJ Wakefield.

The question immediately occurs: Of the ‘several thousand children on the autistic spectrum who have significant gastrointestinal symptoms’ why hasn’t there been any published, peer-reviewed, replicated, science written up by Wakefield? Why hasn’t anyone else managed to find 80% positive results and published peer reviewed science about their results?

Could it be that its only the team who have screwed up their results that find what they want to find? I think so. Lets quote Stephen Bustin once more.

Now, these are from samples that should have been discarded according to the SOP from Unigenetics because there was no GAPDH present, i.e., the RNA is degraded. If you look at the Cts for the F-gene which they reported as positive you can see they’re the same. Now, if this is degraded RNA yet I’m getting the same Cts for my F-gene target this can’t be RNA because it would have been degraded.

That’s what the GAPDH showed me. Now, if it isn’t RNA it has to be DNA. If it is DNA it can’t be measles virus it has to be a contaminant.

Plain English – Wakefield scoped kids. Sent samples to Unigenetics. They should’ve told Wakers the samples were rubbish. They didn’t. They analysed rubbish samples which were contaminated. What they found wasn’t measles virus.

A frequent complaint from the Wakefield apologists is that by analysing blood samples rather than gut tissue, science teams are not comparing like-for-like. There are a number of reasons why this is questionable.

Firstly, there has to be a _reason_ for scoping children. It is not a straightforward procedure.

Towards the end of last year, an autistic child who was scoped following a recommendation by Simon Murch, a colleague of Andrew Wakefield’s, was awarded £500,000 damages after his bowel was perforated in 12 places.

An autistic boy has won a £500,000 payout after the hospital at the centre of the MMR scandal carried out an operation that was ‘not clinically justified’.

Jack Piper, then five, was left battling for life after the procedure, which his parents claim was carried out to establish links between his condition and bowel problems.

His bowel was perforated in more than 12 places during surgery at the Royal Free Hospital in North London.

…………

The colonoscopy was suggested by Professor Simon Murch. He is being investigated by the General Medical Council over allegations that he carried out invasive tests including colonoscopies on 11 other children contrary to their best clinical interests.

It is an ethical issue – is a scoping procedure ethically justified? The answer is ‘no’ – that hasn’t stopped Wakers doing ‘thousands’ though apparently.

Secondly, is there any reason why looking blood is not good enough? Awhile ago, I asked a Doctor (who wished to remain anonymous) who told me:

measles is a lymphotropic virus, even more so for the vaccine strain which has been selected to exploit the CD46 cellular receptor. If there is a persistent MV infection the most logical place to detect it is in cells that it is most adept at infecting. Lymphocytes [a type of blood cell]

(Insert mine).

So, there’s not really any reason why blood cells wouldn’t be suitable to check for measles virus, despite Wakefield’s opinion.

And in fact, at least one team _wanted_ to use Wakefield’s samples but their request was ignored:

The groups of investigators that either had access to original autism specimens or investigated them later for measles virus detection were invited to take part in the study but failed to respond. Similarly, it was not possible to obtain clinical specimens of autism cases from these investigators for independent investigations.

Now I have to wonder why, if Wakefield et al are claiming that only scoped samples are any good, or that blood is no good they didn’t hand over the samples they had harvested with the gratitude of a team expecting to be replicated.

Maybe they didn’t really want another science team looking at these samples. Maybe they feared what another team would find.

And what about this inflammation Wakefield alleges to have found? Turns out that its possible to screen for inflammation without the need for scoping.

Fecal calprotectin is a marker for a range of gastric issues, notably IBD (irritable bowel disease) and Crohn’s which it has positive results for.

A 2002 study Effect of Pentavac and measles-mumps-rubella (MMR) vaccination on the intestine looked at:

if MMR vaccination is associated with subclinical intestinal inflammation, which is central to the autistic “enterocolitis” theory

To do this, the team:

….studied 109/58 infants, before and two and four weeks after immunisation with Pentavac and MMR vaccines, for the presence of intestinal inflammation (faecal calprotectin).

The results were:

There were no statistically significant differences in faecal calprotectin concentrations at any time points (p>0.25) or when assessed in subjects studied before and after Pentavac (p>0.2) or MMR (p>0.3) vaccination

and

There was no evidence that either Pentavac or MMR vaccination provoked subclinical intestinal inflammation in any of our apparently healthy children during the four week post-vaccination period. This lack of a detectable intestinal inflammatory response suggests that the measles vaccine virus itself is not enterotoxic in healthy infants which argues against the MMR induced autistic “enterocolitis” theory.

And so we come back to the bottom line. What direction does peer reviewed published science take us in? It takes us away from Wakefield.

There are no good reasons to believe that blood samples are not good enough to compare with gut samples and if Wakefield believes otherwise, why didn’t he provide the samples to the Afzal team when asked to?

There is no good reason to justify dangerous, invasive procedures such as the one Wakefield has used on thousands of kids and which left one child fighting for life with a massively perforated bowel. Fecal calprotectin is more than adequate as a marker of intestinal issues and using this method reveals no association between MMR and autism.

Bev Talks Back To Jenny McCarthy

10 Feb

Bev has created a bunch of ASD LOL Toyz. Below is my favourite.

lollizard.jpg

MMR Smoke and Mirrors

8 Feb

In the days following the latest in an increasingly long line of studies repudiating the MMR/autism hypothesis, adherents to this belief system have clung wildly to the flotsam and jetsam that is pretty much all that is left to hang on to.

On the ADC Online forum, John Stone encapsulates this position with a letter I’ll go through point by point:

Of the original 1770 Special Educational Needs (SEN)cases in this study 255 were Autistic Spectrum Disorder (ASD). Of the 1770 735 dropped out, then a further 780 were excluded for reasons which are not transparent. 255 were left (a different 255 from before): some ASD, some just SEN but we do not know in what proportion. Then, exactly 100 were excluded because of inadequate blood tests. Of the remainder 101 had ASD (less the 40 per cent of the original 255 autistic cases). None is reported to have bowel disease (the sub-group of Wakefield’s study) or adverse reaction to MMR.

This is numerical hoopla and means nothing. The key to Stone’s frustration is the last sentence of this paragraph and the first one of the next:

It is not clear what the scientific purpose of this study is…….None is reported to have bowel disease (the sub-group of Wakefield’s study) or adverse reaction to MMR. This, of course, makes this a distinct group from the children referred to Andrew Wakefield and his colleagues at the Paediatric Gastroenterology department of the Royal Free Hospital in the 1990s and slighlty beyond.

Stone is arguing that because none of the ASD subjects were found to have bowel issues that disqualifies them as being like Wakefield’s subjects.

Methinks someone has missed the point.

The issue is one of clinical science. Wakefield claims to have found a clinical link between the measles live virus component of the MMR which causes bowel issues with associated autism. However, the Cedillo hearings drove a rather large nail into that particular coffin.

Professor Stephen Bustin is the worlds foremost PCR expert. Bustin uses PCR every day in his work, he has 14 papers in the peer reviewed literature on PCR, over 8 book chapters and is personally the author of the ‘A to Z of Quantitative PCR’ which is considered ‘the bible’ of PCR. One of his papers has been cited over 1,000 times. Another has been cited over 500 times. He both organises and speaks at international PCR conferences. His testimony regarding the Unigentics lab used to find the measles virus in the guts of these autistic kids was invaluable.

Bustin examined the Unigentics lab findings and procedures in great detail (spending over 1,500 hours in the lab itself) and found that the lab (which has now gone bust as a business) made a fairly basic error of science when looking at Wakefield’s samples:

“…Now, these are from samples that should have been discarded according to the SOP from Unigenetics because there was no GAPDH present, i.e., the RNA is degraded. If you look at the Cts for the F-gene which they reported as positive you can see they’re the same. Now, if this is degraded RNA yet I’m getting the same Cts for my F-gene target this can’t be RNA because it would have been degraded.

That’s what the GAPDH showed me. Now, if it isn’t RNA it has to be DNA. If it is DNA it can’t be measles virus it has to be a contaminant.”

In other words, the samples Wakefield provided to Unigentics were useless because Unigenetics own documented lab procedure says they were. But they used them anyway. The results were a bombshell. If the RNA is useless (which the lab process defines it as being) it can’t actually be RNA. If its not RNA then it must be DNA and if its DNA then it can’t be measles virus because measles virus doesn’t exist as DNA.

What the Unigentics lab detected in Wakefield’s samples were contaminants. There’s no way that Unigentics could possibly have been detecting measles virus.

This was backed up by Chadwick who checked Wakefield’s work (at his request). He also did a PCR test.

Q. What results did you receive from the gut biopsy materials for measles RNA?
A. They were all negative.

Q. They were always negative?
A. Yes. There were a few cases of false positive results, which I used a method to see whether they were real positive results or false positive, and in every case they turned out to be false positive results. Essentially all the samples tested were negative.

Q. Did you inform Dr. Wakefield of the negative results?
A. Yes. Yes.

So not only are the samples Wakefield provided useless, the testing he asked Chadwick to perform showed they were useless. And yet he went ahead anyway.

Its also worth noting that every subsequent piece of MMR science (save one unpublished poster presentation) went through Unigenetics lab and went through the same process as Wakefield’s.

So lets be frank – the idea that Wakefield found measles virus in the gut of autistic kids is plain and simply wrong. He screwed up.

The issue then becomes one of probabilities: given that there is no scientific reason to believe MMR causes autism with bowel disorders, it is nonsensical to only look at autistic kids with bowel disorders. And in answer to Stone’s question ‘It is not clear what the scientific purpose of this study is…’ the answer is plain – it has scientifically illustrated that autistic kids had exactly the same measles antibody response as non-autistic kids. No difference. At all.

Stone continues to attempt to muddy the scientific waters:

There is presently not enough consensus about the etiology of ASD to assume there is any single origin, nor anything to rule out ASD subjects having gut symptoms which justify on occasion invasive procedures. The NAS apparently consider that there is a sub-group which is being denied sympathy, investigation or treatment, and this is in itself troubling. It also suggests that this study is not representative since no such cases are included, and it does not address their problems.

This is slipperiness taken to almost artistic levels. Stone is quite right there is no consensus about etiology of autism. That does not mean we cannot say what doesn’t cause it though. And based on the available science, MMR ain’t it.

The paper further does not attempt to claim that autistic kids don’t have gastric issues and Stone’s implication that it does and his attempt to gain the mainstream ground by invoking the name of the NAS is grasping and dishonestly representative of the NAS’s statement. They do _not_ claim, infer or consider that there is any such sub-group. What they suggest is that the MMR debacle has led to some doctors dismissing some parents fears about their kids bowel issues as hysteria. This is, of course, unacceptable but Stone is simply attempting to manipulate the NAS statement for his own ends.

“The NAS warning relates to the GMC hearing involving doctors Wakefield, Walker-Smith and Murch which is set to resume on 25 March approaching. I do not think it is being unduly cynical to query the publication of this study at the present time as a media event, bearing in mind that it seems to have been carried out five or six years ago.”

This is either again deliberately misleading or an example of conspiracy hysteria. From what I can tell the study was commissioned five/six years ago. Not carried out.

Stone concludes:

Meanwhile, the plight of autistic children with gastro- intestinal symptoms is excluded both from the study and public attention, as if they did not exist. The NAS statement warned of “creating further confusion” and this is precisely what this study and its media exposure has done.

Children with gastro issues and autism were not ‘excluded’ they just weren’t found. Maybe they really don’t exist? Maybe Stone would’ve preferred that the study authors fabricate a few subjects?

The bottom line of this gastro/autism issue is that there is no science to back up the opinion Stone has. On the other hand there is plenty of science that indicates there is no link between MMR and autism. Far from this study creating confusion, it has simply shown up the shortcomings of Wakefield’s bad science and Stone and his ilk are in reality the people desperately attempting to create enough confusion for Wakefield to escape unscathed.

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