Action For Autism

Breakthrough in autism research … again.

Last week I wrote about press reports on a possible urine test for autism based on the limited findings of a pilot study that had a number of weaknesses. This week a rather more substantial piece of research has caught the attention of the media. Functional impact of global rare copy number variation in autism spectrum disorders by Pinto et al was published online by Nature on 9 June 2010. It is not an easy read for non-scientists like myself but there are some really helpful commentaries online. The NHS has a very readable guide on its NHS Choices site. PZ Myers has summarized the paper for a lay audience on his Science Blog, Pharyngula. Orac is another Science Blogger who offers his reflections on the study at Respectful Insolence. And the corresponding author for study, Stephen Scherer, answers questions from Kev Leitch over at LBRB.

Any one of these sources would have helped the reporters to write better articles. The Daily Mail and the Telegraph both persist with the theme from last week’s articles that a quick and easy test (Last week it was urine. Now it is a blood test.) will obviate the need for lengthy assessment and allow interventions to start much earlier. The Times also leads on the diagnostic possibilities of the new research.

I am reminded of the TEACCH seminars I attended many years ago with Professor Gary Mesibov from the University of North Carolina. Over three days he saved the lecture on diagnosis until last. His argument was that diagnosis is a relatively straightforward process that only tells us what people have in common. The really interesting stuff happens after diagnosis when you look at the person and assess their individual needs and discover what makes them unique.

Let us assume that The Mail is right and a blood test is developed that can reveal a child’s autism at 6 months. It will not reveal what they need in terms of speech therapy, occupational therapy, and educational provision. Specialists will still want to assess the child in order to prescribe programmes tailored to their personal requirements. If anything we want more follow up not less.

Actually, The Mail is emphatically wrong with its headline

Blood test to diagnose autism could be ready in three years

They attribute this claim to the research team from Oxford University who took part in the study.

A simple test that could revolutionise the diagnosis of autism could be available within just three years.
The kit would use a few drops of blood to help doctors decide if a child has the devastating condition, speeding up diagnosis and allowing life-altering treatment to start earlier.
The test, which Oxford University researchers believe could be in NHS clinics by 2013, would capitalise on the results of a landmark genetic study into the root causes of autism.

Which is strange. Because The Guardian reports that

Anthony Monaco, a geneticist at the University of Oxford, re-iterated Gallagher’s point by saying that the genetic picture of autism was too complex to make meaningful predictions [about genetic testing] right now.

And there is nothing in the press release from Oxford University to support The Mail’s claim. What is actually happening is that the Oxford University team in conjunction with researchers at Newcastle University, both of whom took part on the current research, are seeking funding for a pilot study to carry out further testing on 1000 autistic subjects to see if a diagnostic test is viable. We may get the results of the pilot study in three years. We most certainly will not have a readily available genetic test by then.

We should not be too surprised at the lack of accuracy in The Daily Mail. It is a long time supporter of Andrew Wakefield and purveyor of scare stories about vaccines and autism. The Daily Telegraph is a serious broadsheet newspaper. We expect better of it. But Richard Alleyne, the science correspondent, makes no attempt to reconcile his acceptance of this research with his equally enthusiastic response to last week’s reports that autistic children had a different metabolic profile, revealed in urine tests, that suggested that alteration to the flora in their intestines was the key to their autism.

PRESS RESPONSIBILITY

This goes to the heart of the problem with science reporting in the press and on TV. When scientists introduce new findings they have to frame them in the context of our previous knowledge. Journalists are under no such strictures even when reporting on developments that are contradictory.

The Guardian and The Independent were suitably cautious in their reporting and did not hype up the prospect of genetic tests. The Independent pointed out that

They believe that eventually it may be possible to devise genetic tests to determine a child’s predisposition to autism so they can be diagnosed before more obvious symptoms become apparent. Such tests are unlikely to be able to provide an unequivocal result – just a probability for the chances of developing autism.

Paradoxically, the more cautious reporting in the Guardian and the Independent did not refer to the National Autistic Society’s position. But the more enthusiastic Telegraph and Mail did carry a statement from Dr Gina Gomez de la Cuesta of the National Autistic Society that

“This study furthers our understanding of genetic variation in autism, however there is a great deal more research to be done.
“Genetic testing for autism is still a long way off, given that autism is so complex. Whilst it is very important that research continues, it is also crucial that those living with the condition have access to appropriate advice and information, as the right support at the right time can make an enormous difference to people’s lives.”

Overall, the press did a better job on this story than on last week’s tale of urine tests. But that is only because this was a much better piece of science with lots of experts involved who were willing to talk to the press. There has been a lot of criticism of the standard of science reporting and the media have taken a lot of the flak for perpetuating controversies like the MMR Hoax because they did not understand the science. But journalists can only understand what scientists (or their press officers) tell them.

Moreover journalists are unwilling to challenge, or critically evaluate the claims made by scientists. There is a sort of deference reminiscent of political reporting in the UK in the 1950s when a television interview consisted of a journalist asking a senior politician what he wanted to say and maintaining a respectful silence before thanking him at the end. This all changed with Robin Day who was one of the first to ask really probing questions of world leaders.

I am not suggesting that journalists should raise technical questions at the level of peer review. But when research institutions issue press releases and encourage the publication of stories about their activities in the lay media they should expect to be challenged on questions of legitimate concern to the rest of us.

MISSING QUESTIONS

None of the journalists challenged the researchers’ use of the word “disease” in relation to autism even though it is a common source of contention within the autism community.

Money was not discussed apart from a reference to the $4 million dollars put up by one of the funding partners in the research. Although the cost of DNA profiling will inevitably become cheaper with time it is still expensive and if the prospects for a putative genetic test for autism are a long way off, an affordable test is even more distant.

MISSING ANSWERS

When spokespersons stated that this research would make a difference to the lives of autistic people and their families they were not asked to explain how. Tony Monaco of Oxford University did suggest that knowing there was a genetic cause might stop families from blaming themselves and help them to move on. This is potentially the most useful result of research in the short term. The Guardian acknowledged that

Discovery of a major genetic underpinning for autism will help further allay parents’ fears of a sinister environmental cause, such as the link that was proposed by Andrew Wakefield in a paper in the Lancet in 1998. The General Medical Council recently struck him off the medical register over his research ethics. But some parents of autistic children continue to believe he has been the scapegoat for a vaccine scandal, in spite of the absence of scientific evidence for his claims.

The same point was much more forcefully made at the above mentioned Pharyngula blog.

One fact is so obvious that it’s unfortunate I have to mention it: no external agent, such as a vaccine, can generate a consistent pattern of duplication and deletions in an affected individual’s cells. These data say it’s an error to chase down transient environmental agents given relatively late in life to people.

Orac, also cited above makes a similar point.

Almost as important as the candidate pathways implicated by this study that clearly need further study to validate whether they are truly involved in the pathogenesis of ASDs or not are the pathways that were not implicated. One of the major claims of the “autism biomed” movement, the group of quacks who claim that they can treat autism with all manner of woo ranging from chelation therapy to various antioxidants and supplements, is that there are significant defects in pathways involved in countering the effects of oxidative stress, particularly pathways that result in glutathione production. (Glutathione is one of the major scavengers of reactive oxygen species–a.k.a. free radicals–in the cell.) Such claims were prominently featured by the lawyers for the complainants in the Autism Omnibus. Treatments allegedly targeting “detoxification” pathways involving “Glutathione, Cystathionine, Homocysteine, Methionine” figure prominently on the website of many a quack and are a favorite among the “vaccines cause autism” crowd. Don’t ask me how “vaccine injury” somehow causes oxidative stress sufficient to “cause autism.” Anti-vaccine “scientists” have long and convoluted pseudoscientific explanations that are implausible and unconvincing.

None of these “detoxification” pathways showed up in the analysis of Pinto et al.

Exactly. While the study’s authors and the journalists speculate at length about the future benefits of this research it is left to bloggers like Orac and PZ Myers to point out the incontrovertible lessons that we we can draw from this research in the here and now. While a bewildering number of individual genetic variations have been discovered, the significant ones affect a fairly small number of key processes in neurological development that occur in the developing embryo and early infancy. The process is so subtle and pervasive that it is nonsense to think in terms of a simple genetic predisposition and a single environmental trigger that might occur in early childhood, be it a vaccine or some other hypothetical toxin.

Having dismissed these environmental causes, it would be equally mistaken to argue that the biomedical nostrums of Defeat Autism Now and its imitators are going to do anything to fundamentally alter the architecture of the brain.

QUACKERY DISMISSED BUT NOT THE QUACKS

Which is why it was disappointing that, when the Independent went to Polly Tommey for a “human interest” sidebar to its coverage of the study, it did not ask her the obvious questions about her continuing support for Andrew Wakefield or her husband’s “clinic” that is selling these unproven remedies for autism. Will any journalists attend Polly Tommey’s Audience with Andrew Wakefield on June 17th. and ask him to justify his theories in the face of this contrary genetic evidence?

MISSING VOICES

The most glaring omission in the coverage was the total lack of comments from autistic people. They have been saying for years that they are differently wired. Here we have some research which suggests that it has identified some of the genes responsible for that different wiring and identified the processes involved. The Guardian had Charlotte Moore, a parent. the Independent had Grace Boyle, a sibling. Both provided excellent, thought provoking opinions on the research. But why did nobody ask an autistic person what they thought of this research?

June 13th, 2010 Posted by Mike | genetic research, genetic testing, journalism | 4 comments

Urine Test for Autism

WHAT THE PAPERS SAY

I had hoped that the press would have learned from their experience with Andrew Wakefield and the Great MMR Hoax. Perhaps now they would be more circumspect in reporting “breakthroughs” in the science of autism. But on the evidence of recent reports in the Mail, the Express and the Telegraph it seems my hopes were misplaced. All three papers carried reports on recently published research into Urinary Metabolic Phenotyping and Autism.

The Express story was the shortest and its headline was suitably cautious.

NEW TEST MAY SPOT AUTISM IN CHILDREN

It has all the essentials.

The Mail also maintains a note of caution in its headline

Revolutionary urine test for autism could soon diagnose children with the condition

Its story contains the same elements as the Express but adds that

• The diagnostic process is not only lengthy but also traumatic for young children.
• It is proven that autistic children have different microbes in their gut.
• The test should be available in 5 years time.

Both papers seem to have taken their story direct from the press release issued by Imperial College London. Both make much of the lengthy diagnostic procedures and suggest that a simpler biomedical test could replace these procedures. In this they misunderstand the nature of autism and the problems we face in getting a diagnosis.

At present the problem is not so much the length of the assessment  itself but the time spent waiting between appointments. First you need a referral, usually from a GP. When you finally get to see the diagnostic team there is not a uniform procedure. Then you wait for the report. Then, armed with your diagnosis the real work begins of identifying and accessing whatever services are available in your area. It would be better if everyone got to see a consultant paediatrician or child psychologist along with assessments for speech and language therapy, occupational therapy and a full medical work-up that led seamlessly from diagnosis to appropriate services tailored to the child’s individual needs.

If a urine test can be developed it will be more in the nature of a screening tool. It might conceivably expedite the initial referral but it will not replace the need for a detailed follow up.

THE HYPE

The Telegraph is rather more forthcoming in its headline.

Autism test could make the condition ‘preventable’

This goes way beyond what was claimed in the press release and is based on this quote from one of the researchers, Professor Nicholson.

“Children with autism have very unusual gut microbes which we can test for before the full blown symptoms of the disease come through.
“If that is the case then it might become a preventable disease.”

Professor Nicholson is an eminent and well respected scientist in the field of biological chemistry. But nobody on the research team has a primary qualification or research interest in autism. Dr Yap is a member of the National Autistic Society. Dr Angley is a pharmacist who has turned to autism research and published papers on biomedical interventions for autism. But they appear to have been ill-advised on the present state of academic research into autism, particularly in regard to the gastro-intestinal tract. This may be down to the fact that they offer

thanks also to Dr. D. Granpeesheh (C.A.R.D, Los
Angeles, Ca.) for helpful discussions on the manuscript and
related data.

Doreen Granpeesheh has been a long time colleague and supporter of Andrew Wakefield and her C.A.R.D. organization continues to provide educational services to parents who attend Thoughtful House, the Texas clinic that Wakefield established after his departure from the UK. This may explain the uncritical acceptance of papers by Wakefield and others on the fringe of autism research that informs this paper’s position on a unique disturbance of microbes in the gut of autistic people. LBRB and Countering Age of Autism both discuss the questionable nature of these sources.

Even so, Professor Nicholson is going far beyond the study’s findings with these speculations. He is suggesting that the alleged abnormal microbial environment in the gut is what causes autism. The journalist, Telegraph Science Correspondent, Richard Alleyne extrapolates from this to suggest that

Eventually the link between the learning difficulties and the gut microbes could be established and that could lead to “probiotic” treatments or cures.

It is not always clear to this reader whether Alleyne is expressing his views or paraphrasing Professor Nicholson. Either way, the entire piece displays intense ignorance about autism.

We are told that early intervention can prevent permanent psychological damage. Diagnosis presently occurs after the damage has been done. Early intervention is delayed because it is currently difficult to establish a firm diagnosis until children begin speaking.

But even if we had a reliable urine test at 6 months of age what sort of intervention is envisaged at that age? Glenn Doman’s quackery?

THE PRESS RELEASE

I do not understand why Imperial College issued a press release about this. It is a pilot study. The results are interesting but will not be significant until they are replicated on a larger scale. The study itself is very honest about its limitations and the need for more work. If there is to be a simple test for autism it is still years away.

It is easy to criticize the media for misleading coverage of scientific affairs.But in this case the media seem to have been misled by ICL. The press release begins thus:

Children with autism have a different chemical fingerprint in their urine than non-autistic children, according to new research published tomorrow in the print edition of the Journal of Proteome Research.

No matter how much they qualify this opening statement, that is the headline for any news editor. But is it true? To answer that we have to look at the study itself.

WHAT THE PAPER SAYS

I have read the paper in question. It is not an easy read and I do not pretend to understand all of it, especially the technical discussion of methodology and the statistical analysis of results. But, having read a lot of autism research in recent years, a number of questions occur to me.

Recruitment

Normally studies like this go into some detail about how the subjects were recruited. This is because so many details can confound a study. Are subjects matched for age, gender and socio-economic status? As we are looking at biomedical markers in urine at what time of day was it collected? Were all subjects controlled for diet, supplements and medication? We are not told. Bizarrely, part of the control group was recruited in Switzerland. all the rest were Australian. Why? We are not told.

Results

The “unique fingerprint” claim suggests to a lay audience (and the claim was made in a press release aimed at a lay audience) that they tested the urine and the results showed three distinct results - autistics, siblings of autistics and controls. However, the way they tested showed so many variations between individuals that autism specific variations were not  that obvious. They had to run the results through a sophisticated statistical analysis to identify any significant differences. Different methods of analysis revealed different results.

Visually, allowing for the interindividual variability, the urinary spectra were very similar, but the autistic individuals showed subtle differences in urinary succinate, N-methyl nicotinic acid (NMNA) and N-methyl nicotinamide (NMND) compared to the controls, as evidenced from the median spectra shown in Figure 1.
Multivariate Statistical Analysis of the NMR Spectral

To further explore the metabolic differences between the three groups of participants, multivariate statistical analyses were employed on the full resolution NMR data set consisting of 34 controls, 28 siblings and 39 autistic urine samples to extract useful metabolic information. PCA was carried out on UV-scaled data to identify any inherent differences within the data set. The resulting scores plot of PC1 versus PC2 (Figure 2A) showed no clear differences between the three groups, all pairwise combinations of PCs down to PC3 were examined, which showed no discrimination indicating that the major source of variation in the data was not related to autism, but was rather dominated by interperson variability.

However by utilizing group information in PLS-DA analysis, systematic differences could be observed between the three groups (Q2 ) 15%; R2 (goodness of fit) ) 65.7%). The corresponding crossvalidated PLS-DA scores plot (Figure 2B) showed clear separation between autistic individuals and the controls and partial separation between siblings and the controls.

I take that to mean that when looking at the data for each individual there was not a single feature, a chemical fingerprint, that identified all the autistic individuals. But when they looked at each chemical in turn and checked its prevalence in each of the three groups they did find a statistically significant difference between groups. They may have identified potential fingerprints but they have no reliable way, as yet, of using them to identify autistic subjects.

Interpretation

There is a lot of discussion of how the results may be indicative of metabolic dysregulation that fits with certain hypotheses about possible metabolic pathways in autism, always with the caveat that further studies are required. I feel that this discussion is premature. All the weaknesses above - the over hyping of results and the attempts to present a preliminary study as supporting a hypothesis about the gut and autism that is much disputed and lacking in hard evidence - all this finds its basis in similar overreaching assumptions in the paper itself. Something is going on here in addition to the science that threatens to subtract from any merit the study might have.

And the study is not without merit. It would indeed be a step forward if we could establish biological markers for autism. But any follow up will have to address the waeakneses identified in this excellent commentary from NHS Choices

The research has several limitations:

The researchers point out that, as it is not possible to tell whether these differences indicate a cause or consequence of the disease, further research is needed in a larger group of children over time.
Different statistical analyses had different results, some showing differences in certain chemical levels in autistic children, while others did not.

The researchers did not assess the medications the children with autism were taking for their condition or the diet they were following. Both would affect the chemicals they found in the children’s urine samples.

Finally, these children had already been diagnosed with autism, and the study design was cross-sectional, looking at their urine samples from only one point in time. It is not possible to say whether there would be any differences in the chemicals found in the urine in younger children prior to standard diagnosis, and whether it could be used as a diagnostic tool.

This is encouraging research, but it is too early to say whether this research would be of benefit in terms of providing an additional diagnostic tool for autism in children.

June 6th, 2010 Posted by Mike | journalism, research, science | 8 comments

Polly Tommey and the Autism File

Polly Tommey is feeling the pressure. According to an article she wrote for The Age of Autism leading autism organizations in the UK, academics and celebrities are telling her that her continuing support for Andrew Wakefield is a liability. Even her advertisers are threatening to pull out.

Specifically, I have been “warned” not to print any more articles written by Dr. Andrew Wakefield (he wrote for the first time in the last issue); I was also warned not to invite him to speak at our conference. Separately, some organizations have warned me that they will not have anything to do with me if I continue to support and publish papers by him. Some advertisers tell me they have to stop working with us as they are “under pressure” to pull out, and a number of celebrities, high earning individuals, journalists, scientists, practitioners, and people who want to contribute to the magazine or to our campaigns say that it’s more than their job’s worth to be associated with the work of this man more than their job’s worth to even listen to what he has to say. All of them say that they can’t support The Autism File if The Autism File appears to support Dr. Wakefield.

Tommey presents this as a threat to her editorial integrity. “They” are trying to silence her. The pressure is all “political.” Even people who might want to work with her or write for the Autism File are afraid to because Andrew Wakefield has been discredited and if they identify themselves with his most stalwart supporter in the UK they too could be discredited and marginalized. Academics are afraid of losing their government funding.

Tommey offers no real evidence to support these claims. She describes a meeting with a senior representative of a leading autism organization,

The message I was very clearly given at this meeting was that if The Autism File magazine continued to publish Dr. Wakefield’s work, if I continued to support him publicly, and if I allowed him to speak at our conferences, then they could not work with either me or The Autism File. He also reminded me, very pointedly, that they worked closely with the Department of Health and were the decision makers regarding many important issues relating to autism . . . .

At some unspecified time in the past, some time ago, an unnamed eminent academic was invited to join the scientific advisory board of the Autism File

He was keen but stated he could only do so if certain existing members – specifically including Andrew Wakefield – were removed from it. He then bluntly warned me that if The Autism File continued to support Dr. Wakefield it would be “shut down.” Despite his standing and expertise, his concern was such that ultimately he chose not to even write for our magazine because, he said, “it is too controversial,” and, given that he is funded by the government, he felt that if he did, then his funding would be at risk.

Finally, she tells of the time when she was appearing on a popular daytime TV show, The Wright Stuff.

Before going on air, the host Matthew Wright joined us in the “green room” and said that he had been told by the show’s lawyers that if Dr. Wakefield’s name was mentioned, he had to say that Wakefield was “discredited.” We questioned why, but Matthew said that he had no choice these were his lawyers’ instructions . . . .
When I was on GMTV they said pretty much the same thing, and we have all read the same in many newspapers.

That is the sum total of her evidence, or at least the evidence that she chooses to present to support her claim that

a number of people and organizations have evidently decided that they should be determining the editorial policy of our magazine

But Polly Tommey is unbowed. She sets out to refute all claims that Wakefield has been discredited and restates her commitment to publish reports and stories that are sympathetic to Wakefield and his theories.

Part of Tommey’s problem is that she is a victim of her own success. The Autism File is a professionally produced, attractive read. It’s basic premise is that autism is a medical disorder that responds to biomedical interventions associated with alternative therapists - diet, supplements, chelation etc. Tommey’s husband, Jonathon runs an Autism Clinic which is promoted by The Autism File and offers

Dietary Modifications
Nutritional Supplementation
Immunological Regulation/ Modulation
Homoeopathy
Gastrointestinal Treatments
Liver Support & Enhanced Detoxification (methylation and transulfation)
Glandular Support (adrenals, thyroid and pancreas)
Heavy Metal Clathration(sic) Therapy
Physical Therapies - exercise, massage, reflexology, kinesiology, lymphatic drainage, yoga, breathing and relaxation techniques, etc.

This is the secret of its success. It has a core readership amongst those parents who believe autism has environmental causes that are treatable. These beliefs are never challenged. According to Tommey

The Autism File exists to provide help and support to parents, professionals, and caregivers in understanding autism better by bringing informed articles and opinions on the condition from all over the world and enabling them to then make up their minds about whether this advice will help their families and their children. We have done this for over 10 years and our readers’ feedback supports our continuing to do this.

But the Autism File does this by offering positive endorsements to a number of approaches including non-biomedical aspects of autism like behavioural therapies, educational therapies and services for adults. It does not publish critical views of any of these therapies. Though it may publish opinion pieces about why conventional research that does critique these therapies is flawed. Unlike its American counterparts that sneer at neurodiversity it acknowledges some of the concerns of autistic adults. It is supporting Gary McKinnon’s campaign against extradition to the USA. It boasts Temple Grandin on its editorial board and publishes articles on education by Stephen Shore. These are two autistic individuals, prominent speakers and authors who distinguish themselves by either endorsing biomedical cures (Grandin) or displaying a benign agnosticism (Shore).

The Autism File has been a commercial success. The international edition is on sale in over 2000 bookshops in the USA and Canada, there is a Spanish language edition and the UK magazine is available from W.H. Smiths, Sainsbury’s, Borders, and selected Tesco stores. Tommey has used this success to promote herself as an autism advocate. I have referred in the past to her successful PR campaigns that have resulted in meetings with the Prime Minister and his wife and invitations to speak at seminars.

But all this limelight has brought her support for Andrew Wakefield into focus. This did not matter when the Autism File was a subscription only house magazine for the Andy Wakefield Fan Club. But now the magazine and its proprietor are bidding to go mainstream they are meeting with widespread suspicion and hostility for their support of Wakefield.

In her defence of Wakefield Tommey seems to think that this is all the fault of a couple of journalists; Horton at the Lancet and Deer at the Sunday Times. She fondly imagines that their campaign to discredit Wakefield will all come unstuck when the GMC delivers its verdict on Wakefield this year after a lengthy investigation into accusations of professional misconduct and breaches of research ethics. I do not know what the outcome will be. If the GMC runs true to form it will probably deliver a fudge that satisfies nobody.

Never mind. In one sense the hearings are irrelevant. Wakefield is already discredited because his ideas have been proved wrong. The NAS fudged the vaccine question for years. Now they have come out against a link between MMR and autism because the science overwhelmingly says so. The MMR hypothesis has been tried in the US courts and found wanting.

Tommey poses some of the bigger questions.

• Why is it so important that Dr. Wakefield is seen to be discredited?
• Whom is it important to?
• Who stands to gain from this?
• Who will lose out if the truth is revealed?
• What is it that people are so frightened of?
• What is it they don’t want us to know?

Given the overwhelming nature of the evidence against Wakefield’s theories one could equally ask similar questions of the Autism File itself and its continuing support for Wakefield and anti-vaccine quackery.

January 8th, 2010 Posted by Mike | Andrew Wakefield, MMR, Polly Tommey, Quackery, journalism | 36 comments

A Broken Trust: Lessons from the Vaccine–Autism War

11 years after Andrew Wakefield launched the MMR/Autism Hoax at a press conference to publicize his paper in the Lancet vaccination rates in the UK have yet to recover and measles is once more endemic in the UK. We had 1348 cases last year compared to 56 cases in 1998. In the USA MMR coverage remains high but measles is making a comeback courtesy of anti-vaccine enclaves amongst the “worried well” who regard autism as a more serious threat than the infectious diseases that, thanks to vaccines, they have never experienced. In the USA 25 percent of adults believe there is a connection between vaccines and autism. They are more likely to blame thimerosal, a mercury based preservative that used to be widely used in childhood vaccines, (but was never in the MMR triple vaccine) and other alleged pollutants that exercise Green Our Vaccines campaigners.

This situation persists despite the fact that Wakefield’s hypothesis is thoroughly discredited. The overwhelming opinion among scientists and doctors, backed by numerous scientific studies, is that there is no evidence of a connection between MMR and autism. A similar situation pertains with regard to thimerosal containing vaccines (TCVs). Moreover it is now 7 years since all routine childhood vaccines in the USA became thimerosal free. The growth of autism has not abated. This alone suggests that vaccines are not responsible.

Liza Gross discusses the reasons for this in an article published today by PLoS Biology, an open access journal, freely available online. In the article, entitled “A Broken Trust: Lessons from the Vaccine–Autism Wars,” Gross draws on the work of medical anthropologist Sharon Kaufman in an effort to understand

how the idea of a vaccine–autism link continued to gain cultural currency even as science dismissed it.

It is interesting to note both the similarities and the differences between the British and American responses. In the USA the authorities invoked the precautionary principle to remove thimerosal from childhood vaccines. The American Association of Pediatrics (AAP) issued a statement to reassure the public that

This merely served to convince a section of the public that there must be something wrong based upon the nostrum that there is no smoke without fire. In the UK health officials took an opposite stance in relation to MMR, refusing Wakefield’s call for the MMR vaccine to be split into separate shots because there was no evidence to support his claims. Rather than reassure the public, this tough stance was presented as evidence of yet further government intransigence in the face of a potential health disaster and is best understood in the context of the contemporaneous controversy over mad cow disease and the threat posed to humans from contaminated beef.

Kaufman argues that the hold which these narratives exert on the public consciousness goes a long way to explaining why the subsequent efforts by authorities both in the UK and the USA to marshal and present a wealth of scientific evidence has failed to seriously dent public perceptions. 

Gross talked to Paul Offit, who correctly pointed out the need to bridge the gap between public and scientific perceptions of risk. But public understanding has always lagged behind science. The difference today is that public trust in science has been eroded. And the technological revolution that is the World Wide Web means that anyone can go online and find competing voices that are just as “sciency” as the experts we used to rely on. But these online health gurus make their living by being persuasive, not necessarily by being right.
What they have is a story with more narrative power than the strictly factual accounts of their scientific gainsayers. Offit understands this. It is why he has turned down requests to appear on any show with Jenny McCarthy, who uses her celebrity status to promote the anti-vaccine message.

‘‘Every story has a hero, victim, and villain,’’ he explains. ‘‘McCarthy is the hero, her child is the victim—and that leaves one role for you.’’

Gross ends with Rachel Casiday, a medical anthropologist in the UK who believes that the answer is for scientists to counter attack with narratives of their own.

Casiday suggests providing an alternative, science-based explanation or relating emotionally compelling tales about counter-risk—such as helplessly watching a young child die of a vaccine-preventable disease—in the same narrative format.

My only criticism of this article is that it can be seen as perpetuating a myth, a narrative if you like, about science being beyond most people. We rely, not upon our understanding, but upon the expert status of others in order to guide our actions. When experts are competing for our attention it is those with the most compelling narratives who prevail. Therefore the real experts need to beef up their image and their presentation skills and beat the self-styled experts and lifestyle gurus at their own game. 

There is another story that needs to be told. The anti-vaccine movement did not emerge without challenge. The real experts may have missed the signs and failed to counter the contrarians until it was almost too late. But a number of parents of autistic children together with autistic self advocates have been meeting the challenge of the anti-vaccine movement online on email lists, in newsgroups, blogs and the latest social networking sites.

We do not think of autism in terms of epidemics and public health disasters. We want help to deal with the consequences of autism rather than its alleged causes. We believe that social models of disabilty have at least as much to say about autism as medical models. We need to celebrate and encourage autistic strengths while acknowledging the very real difficulties that face autistic people and their families. 

Some of us have a professional as well as a personal involvement in autism. But most of us do not. That has not stopped us from grappling with the science in order to marry the narrative of our lives or our children’s lives to the scientific evidence in order to create new stories. If the professionals would take heed of our stories they would be better placed to challenge the pity party mentality of those who would demonize both science and autism to the detriment of both. And, who knows, perhaps together we can create positive outcomes for our narratives. 

May 26th, 2009 Posted by Mike | journalism, science, vaccines | 6 comments

Chicago Tribune takes on Geiers’ junk science

Three years ago I wrote a post, Evidence of Pharm, which began, 

When scandalous events come to light the local community are always agreed. “We had no idea.” “He was such a pillar of the community.” “They babysat our children.” “They always gave generously to charity.” Etc.

So how will the good people of Silver Spring, Maryland, USA react when some of their own are finally exposed for using bad science to perform medical experiments on helpless children by pretending they have a cure for autism and persuading the parents to claim back the cost from their medical insurance?

It would be nice if they could read it first in the local press. So I am copying this to the editors of the:

Silver Spring Gazette: jgrbach@gazette.net
Silver Spring Voice: bond@takoma.com
Montgomery County Sentinel: editor-mc@thesentinel.com

All that follows is already in the public domain. All I have done is provide a summary. The editors can check it themselves or email me with any queries about sources.

The editors did not respond and the family firm of Mark and David Geier continued to perpetrate medical malpractice on children from their home in Silver Spring, Maryland, USA. I wonder if these editors will respond to recent reports in the Chigago Tribune under the headlines, ‘Miracle drug’ called junk science and Physician team’s crusade shows cracks. The Chicago Tribune has done a great job, no doubt benefitting from the detailed research into the Geier’s activities published by Kathleen Seidel on her Neurodiversity blog. They have also unearthed some real gems themselves.

David Geier told the Chicago Tribune that leading autism specialist, Simon Baron-Cohen, supported ther use of Lupron to treat autism. Baron-Cohen told reporters that

“The idea of using it (Lupron) with vulnerable children with autism, who do not have a life-threatening disease and pose no danger to anyone, without a careful trial to determine the unwanted side effects or indeed any benefits, fills me with horror,”

When

Four of the world’s top pediatric endocrinologists told the Tribune that the Lupron protocol is baseless, supported only by junk science. More than two dozen prominent endocrinologists dismissed the treatment earlier this year in a paper published online by the journal Pediatrics.

Mark Geier responded by saying

that these are “opinions by people who don’t know what they are talking about,” saying the pediatric endocrinologists interviewed by the Tribune don’t treat autistic children and have not tried the Lupron treatment.

Lupron is a powerful drug that blocks the production of sex hormones. The Geiers use it on autistic children at ten times the dose used to treat the legitimate but rare condition of precocious puberty. It is also used to treat prostate cancer and to chemically castrate sex offenders. The long term effects on healthy children are unknown but are unlikely to be good. Its use on autistic children has no scientific backing. It is untested. It has no known therapeutic benefits and the potential for harm.

While Lupron might not have a significant impact on very young children — beyond the discomfort of daily injections — they said continuing treatment into the teen years is another matter. Lupron would put puberty on hold for those children.

A teenage boy “becomes a kid again,” said Dr. Alan Rogol, a pediatric endocrinologist at Riley Hospital for Children in Indianapolis. “He stops making testosterone. They don’t grow as well. It is not good for their bones. They would come to a dead stop.”

Meanwhile the Geiers continue to open clinics across the USA offering this “treatment” and are welcome speakers at fringe autism conferences. The lack of regulation for so-called alternative (aka quack) therapists in the USA makes it unlikley that the authorities will clamp down on their business. But the high cost of treatment is often borne by patients’ medical insurance. This has led one recent convert to the Geier’s Lupron treatment, Mayer Eisenstein, to have second thoughts.

Eisenstein said he would not treat teenagers with Lupron, citing insurance difficulties. “It is easy to explain a 4- to 5-year-old with high testosterone [to an insurer]. It falls under precocious puberty,” he said. “But with an 11-, 12-year-old, it becomes a big fight.”

Eisenstein has visibily cooled towards the Geiers during interviews with the Chicago Tribune over the last few days. The Tribune’s interest has unearthed some unsavoury aspects of his own medical practice which he doubtless would have preferred not to see featured in their pages under the headlines, Autism doctor: Troubling record trails doctor treating autism and Dr. Peter Rosi places blame on some parents for their babies’ deaths

Let us hope that the credit crunched insurance industry will do what the regulatory authorities have so far singularly failed to do. Their refusal to underwrite the Geiers’ junk protocol would protect children as well as their balance sheets. Meanwhile I hope that the Chicago Tribune’s reports will at last provoke the authorities into taking action to end the Geiers’ reckless endangerment of children.

One thing it will provoke is a frenzy of denial and accusations from the usual suspects over at Fromage of Autism (Yes. They are that cheesy) and the rest of the biomeddlesome autism fringe. But there is plenty of support for the Chicago Tribune as well. Here are a few to be going on with.

Left Brain Right Brain 
autism.change.org 
Photon in the Darkness
Respectful Insolence 
Mindless Mommy 
Neurologica
Chicago Moms 

Finally, do take the time to email the reporters at the Chicago Tribune and thank them for bringing this outrage to a wider audience.

pcallahan@tribune.com 

ttsouderos@tribune.com 

May 22nd, 2009 Posted by Mike | Lupron, Quackery, journalism | 3 comments

RFK, Autism and the Vaccine Court

The Kennedy name still resonates with liberals and democrats around the world. So when Robert Kennedy weighed in on the vaccine-autism controversy with his article Deadly Immunity a lot of people took notice. Unfortunately for RFK some of them actually took the trouble to read the Simpsonwood transcript on which he based his tale of conspiracies and cover-ups and discovered that he had systematically distorted it in order to make it seem that it said the exact opposite of what it really said.

On that occasion he was promoting the idea that the miniscule amounts of mercury that used to be found in early childhood vaccines could cause autism. He is back again with another article promoting the vaccine autism connection. This time he has the US Court of Federal Claims (aka the Vaccine Court) in his sights.

RFK operates from a simple set of premises.

• The Vaccine Court exists to protect the vaccine program and vaccine makers.
  
• It employs a draconian armory of weapons deployable against plaintiffs intent on proving the causal connection between vaccines and autism.
• The standard of proof in the OAP is impossibly high.
• The CDC has actively, openly and systematically suppressed and defunded epidemiological studies that might establish a causal link. So the special masters in the vaccine court have to find for the government because of insufficient evidence.
  
• It’s Tobacco all over again only now it is the government and big pharma instead of the tobacco companies who are the villains. He even calls the studies that contradict his meanderings “tobacco science.”
  

Every one of his premises is wrong.  If it was just the case that  RFK does not know what he is talking about it would be a simple matter to educate him. But, just as with Simpsonwood, he has studied the evidence and twisted it to match his agenda.

RFK on the CDC

Let us start with his most outrageous accusations against the CDC, that they are actively suppressing research and funding junk science to protect the vaccine programme. He offers no evidence at all for this claim. He does not cite a single study that has been thwarted or quote from a single disgruntled whistleblower. The CDC funding comes from the federal budget and is subject to scrutiny and oversight by the Appropriations Committee. This year they are gently chided for spending so much time on autism research and reminded that cerebral palsy is in danger of being neglected.

The Committee is pleased with CDC’s progress in autism and developmental disabilities surveillance and is encouraged to learn of the launch of the largest ever epidemiologic study of potential causes of autism spectrum disorders. The Committee encourages CDC to build upon these successes and to also focus on the development of surveillance and research activities focused on cerebral palsy, another priority public health concern. (Page 110)

This will not please RFK. He wants vaccine studies not epidemiology. But that is being taken care of. The Appropriations Committee again.

ITEM
Autism and vaccines — The Committee continues to be aware of concerns about reports of a possible association between the measles component of the measles-mumps-rubella vaccine and a subset of autism termed autistic entercolitis. There have been presentations at medical meetings by researchers presenting data showing the presence of measles RNA in inflamed intestines of children with autism. The Committee continues its interest in this issue and encourages the interagency coordinating committee to continue to give serious attention to these reports. The Committee is aware that research is underway, supported by NIH, and encourages NIH to expedite this research. (Page 168-169)

RFK objects to epidemiological studies because they are supposed to be too crude to pick up the tiny numbers of vaccine susceptible figures. What we need instead are case control studies. Never mind that we are also supposed to believe that there is a vaccine induced autism epidemic affecting tens of thouands of children. Never mind that it was epidemiological studies that nailed tobacco as a cause of cancer and later nailed passive smoking while the tobacco industry relied on case control studies and dubious lab tests. So much for “tobacco science.”

Never mind. There was a case control study done recently. Two of the researchers had been witnesses for the families in the MMR litigation in the USA UK. The lead researcher, Mady Hornig had authored a study on mercury that was used by the petitioners in the Autism Omnibus. Another member of the research team Ian Lipkin explained how “the autism/parent advocacy community” had been involved in the design of the study to “ensure that all issues were being addressed.” The study was condemned by the autism/parent advocacy community when the results turned out to be

“inconsistent with a causal role for MMR vaccine as a trigger or exacerbator of either GI difficulties or autism [...] The work reported here eliminates the remaining support for the hypothesis that autism with GI complaints is related to MMR vaccine exposure. We found no relationship between the timing of MMR vaccine and the onset of either GI complaints or autism.”

Of course the fact that some of the funding and participants came from the CDC and the NIH was enough to invalidate the study in the eyes of true believers who judge research by its results, regardless of the merits of its methodology.

Vaccine Court

The same holds true of RFK’s opinion of the Vaccine Court. When Special Master Abell finds in favour of Bailey Banks it is “a remarkably clear and eloquent decision.” When three special masters find against the  test cases in the Autism Omnibus they are guilty of a “sweeping ruling.” Later he berates the special masters for placing undue reliance on medical records which are (allegedly) “often inaccurate.” But Bailey Banks won his case because in his“remarkably clear and eloquent decision.” Special Master Abell repeatedly cited Bailey’s medical records as corroborating his claim. RFK is not above citing medical records in evidence. Here for example.

Medical records associated with these proceedings clearly tell the tale. In perhaps hundreds of these cases, the children have all the classic symptoms of regressive autism;

Medical records, like case control studies it seems, are only inaccurate when they fail to confirm your prejudices. Unlike RFK who is consistently inaccurate.

• RFK: Although the vaccine court is mandated to fairly serve the victims of vaccine injuries, their primary purpose and raison d’etre is to protect the vaccine program and vaccine makers.
• FACT: The VICP was established to ensure an adequate supply of vaccines, stabilize vaccine costs, and establish and maintain an accessible and efficient forum for individuals found to be injured by certain vaccines. The VICP is a no-fault alternative to the traditional tort system for resolving vaccine injury claims that provides compensation to people found to be injured by certain vaccines. The U. S. Court of Federal Claims decides who will be paid.
• RFK: Damages are capped; awards for pain and suffering are strictly limited and punitive damages banned altogether.
  
• FACT: Awards to the estate in a vaccine-related death are limited to $250,000 plus attorney’s fees and costs. Awards to individuals with an injury judged to be vaccine-related have averaged $1,022,699. There is no limitation on the amount of an award in a vaccine-related injury. However, the law does contain certain restrictions. Eg a $250,000 cap on pain and suffering. And how can you have punitive damages in a no fault compensation scheme?
  
• RFK Plaintiffs, in contrast, must fund the up front costs for experts on their own.
• FACT: If certain minimal requirements are met, the VICP will pay your lawyer’s fees and other legal costs related to your claim, whether or not you are paid for a vaccine injury or death. The VICP will not pay the fees of petitioners representing themselves, but will pay their legal costs, whether or not the claim is paid as long as certain minimal requirements are met. In effect, lawyers meet the up front costs of expert witnesses and bill the court at the end of the hearing.
• RFK: Worst of all — plaintiffs have no right to discovery either against the pharmaceutical industry or the government.
• FACT:
  (1) Scope in General. Unless otherwise limited by court order, the scope of discovery is as follows: Parties may obtain discovery regarding any nonprivileged matter that is relevant to any party’s claim or defense—including the existence, description, nature, custody, condition, and location of any documents or other tangible things and the identity and location of persons who know of any discoverable matter. For good cause, the court may order discovery of any matter relevant to the subject matter involved in the action. Relevant information need not be admissible at the trial if the discovery appears reasonably calculated to lead to the discovery of admissible evidence. All discovery is subject to the limitations imposed by RCFC 26(b)(2)(C).

Vaccine Safety Database

RFK complains that the government is restricting access to the Vaccine safety Database to the detriment of plaintiffs. And so it should. The VSD contains over 7 million medical records. They are held by major private care organizations who have a duty to protect patient confidentiality. The VSD is not and never should be a happy hunting ground for vaccine injury compensation lawyers. Bona fide researchers should have access to the VSD but the antics of a pair of “researchers” who make their living as expert witnesses in vaccine cases has not helped anybody in this respect. As Casewatch reports.

In summary, during the first visit the researchers conducted unapproved analysis on their datasets and on the second visit attempted to carry out unapproved analyses but did not complete this attempt. This analysis, had it been completed, could have increased the risk of a confidentiality breach. Before leaving, the researchers renamed files for removal which were not allowed to be removed. Had it gone undetected, this would have constituted a breach of the rules about confidentiality.

MMR or DTP?

RFK states that

since 1988, the vaccine court has awarded money judgments, often in the millions of dollars, to thirteen hundred and twenty two families whose children suffered brain damage from vaccines. In many of these cases, the government paid out awards following a judicial finding that vaccine injury lead to the child’s autism spectrum disorder. In each of these cases, the plaintiffs’ attorneys made the same tactical decision made by Bailey Bank’s lawyer, electing to opt out of the highly charged Omnibus Autism Proceedings and argue their autism cases in the regular vaccine court. In many other successful cases, attorneys elected to steer clear of the hot button autism issue altogether and seek recovery instead for the underlying brain damage that caused their client’s autism.

The Omnibus was not established until 2002. So I doubt that many of these families opted out of its proceedings. As far as I know there are very few judicial findings that a vaccine injury led to an autism spectrum disorder. Kathleen Seidel found 9 cases which she reported on her Neurodiversity blog. If one looks at the statistics for the VICP it is apparent that there have been two spikes in petitions. The first occurred, reasonably enough in the first three years of the vaccine court and was overwhelmingly concerned with the old style DTP vaccine that was associated with encephalopathy and seizures. According to David Kirby the government sent CBS an email about these 1322 brain damaged children.

Slide 75

Email from HHS to CBS
Here are the numbers of compensable cases for encephalitis / encephalopathy and seizures in our database from October 1, 1988 to March 4, 2008.
Encephalitis/Encephalopathy    611
Seizure Disorders                     711
Total                                     1,322
There’s not much difference in the medical history and outcomes for children that were compensated for “encephalopathy” versus “seizures.”
Those compensated for encephalopathy often had seizures as part of their clinical picture, and vice versa.

How many of these were petitions for vaccine injury by the old DTP that had nothing to do with autism? It does not matter to RFK because he is trying to make the case that hundreds of autism claims have been settled that never mentioned the A word because to do so would bring down the wrath of the special masters upon you. He cites the unseen medical records as “evidence,” claiming that even though autism is not mentioned these records clearly show the pattern of regressive autism.

In fact autism has never been a barrier to claiming a vaccine injury. Bailey Banks attorney is quoted by RFK as saying that he decided not to go with the Omnibus because that would have made it harder to win. That is hardly surprising as in Bailey’s case a single incident of acute disseminated encephalomyelitis (ADEM) was alleged to have caused his problems. The omnibus was arguing for a persistent measles virus in the brain and never mentioned ADEM in any of the three test cases.

JFK’s other source is vaccine injury lawyer Robert Krakow.  But somehow, despite quoting him extensively, RFK never gets round to informing us that Krakow is himself the parent of an autistic child. He was intimately connected with the Omnibus for many years. In fact he was to be the replacement test case for Hannah Poling until he decided that the evidence for mercury causing autism was so weak that he jumped ship and is now pursuing his own claim for a vaccine induced mitochondrial disorder.

As to the alleged hostility of the special masters to autism claims, I am grateful to Anne who commented (no 5) on the Neurodiversity blog cited above as follows;

July 3, 2002 Autism General Order #1. There Chief Special Master Golkiewicz recounted how Cliff Shoemaker and other counsel for petitioners wanted to put the autism claims on hold pending scientific developments that they could use as proof of causation. Although the Special Master agreed to place the cases on hold, he forcefully reminded petitioners and their counsel that “[a]utism cases involving Table Injuries have been compensated under the Program,” and that cases like that should not be held up in the omnibus proceeding:

“One important caveat, however, is drawn to the attention of all petitioners and their counsel! There may be cases involving autistic-like disorders which manifested following an injury defined in the Vaccine Injury Table. That is, a vaccine may have suffered an episode involving a severe acute encephalopathy within 72 hours after a pertussis vaccination (DTP or DTaP), or 5 to 15 days after an MMR vaccination. If so, such an acute encephalopathy and any residual effects thereof would be presumed to be vaccine-caused pursuant to the Vaccine Injury Table. See 42 C.F.R. § 100.3(a) (10-1-97 version of CFR).5 However, this would apply only to cases falling within the current Vaccine Injury Table’s definition of “acute encephalopathy,” in which the vaccinee suffered a sudden, dramatic, and severe change in level of consciousness lasting at least 24 hours. 42 C.F.R. § 100.3(b)(2)(i)(A) and (D). The incident must have been “sufficiently severe so as to require hospitalization,” though actual hospitalization at the time need not have occurred. 42 C.F.R. § 100.3(b)(2)(i). Autism cases involving Table Injuries have been compensated under the Program. If in a particular case there exist medical records demonstrating that such a qualifying “acute encephalopathy” occurred within the appropriate time frame, petitioner or counsel should bring that to the assigned special master’s attention so that, if appropriate, the case can be processed without delay as a Table Injury.

Finally, petitioners should note that even after electing to have their case stayed pending the conclusion of the Omnibus Autism Proceeding, such election is not irrevocable. That is, if at a future time a petitioner determines that his own case should be separated from the Omnibus Autism Proceeding and processed separately, with the petitioner introducing case-specific proof of causation, such petitioner may request that a special master analyze his case. A special master will be assigned and the case will be processed as expeditiously as possible.”

(7/3/02 Autism General Order #1, pp. 6-8.)

So the special masters were inviting plaintiffs to submit claims for table injuries and bypass the Omnibus because they did not want children to suffer unnecessary delay in obtaining compensation, not because they were trying to cover up the alleged vaccine autism connection. Perhaps they remembered the previous spike in vaccine claimants when according to one attorney who spoke to Arthur Allen over a third of all claims had nothing to do with DTP. The government set the evidence barrier low and it was exploited. Predictably the government reacted and removed most of the injuries from DTP from the list that receieved automatic awards - the list of table injuries. And just to show how unworthy is RFK’s appraisal of the special masters as tools of the government here is another quote from Arthur Allen’s book. This time it is the senior special master, Gary Golkiewicz, commenting on the removal of DTP injuries from the table who told Arthur that the government had

“altered the game so that it is clearly in their favor. This group has a vested interest in vaccines being good. It does not take a mental giant to see the unfairness in this.”

So much for special masters as government stooges. I have had enough of RFK. I empathize with the commenter on his article who wrote that he never expected this to be the last piece he ever read by Robert Kennedy. I hope it is the last piece I ever have to read as well.

March 1st, 2009 Posted by Mike | MMR, autism Omnibus, journalism, vaccines | 7 comments

Jeni Barnett, Bad Science and MMR

What is it about critics of MMR that makes them so litigious? In this case it is lawyers acting for LBC who, citing breach of copyright, have compelled Ben Goldacre of Bad Science to take down a segment from one of their talk shows in which the presenter, Jeni Barnett, managed to include every myth, half truth and falsehood that go to make up the Great MMR Hoax. On her blog, without any irony at all she complains about her critics trying to silence the debate on MMR! Antony Cox over at Black Triangle places this latest episode in its historical context of repeated attempts by anti-vaccinationists to use the law to silence their critics and gives the lie to claims that the establishment is silencing the MMR lobby with another story of an anti-vaccine activist given a free ride on the Today Programme while the scientific expert, included for balance, was grilled and cross-examined by John Humphries.

Predictably, this attempt at a legal gag is doomed to failure. Holford Watch have compiled a list of all the blogs that are carrying this story. The segment has been transcribed and the text is online as is the audio at Wikileak.

Equally predictably, as reported on Black Triangle, the UK anti-vaccination website, JABS is claiming that the scale of the response by pro science bloggers and civil libertarians shows that it must have been orchestrated by the drugs companies.  We are expected to believe that major drug companies, faced with a legal challenge to one of their pet bloggers, have spent the weekend organizing a blog storm. I am sure that it would have been easier just to set their legal team on the case. As ever, when faced with a choice between common sense and a conspiracy theory, the anti-vaccination lobby plays true to form.

February 8th, 2009 Posted by Mike | MMR, journalism | 4 comments

Ethics and autism

The recent media debate about the ethical questions that would have to be dealt with if a reliable pre-natal test for autism became available was notable for one reason. It acknowledged that there was an ethical dimension.

In part this rests on our changing perceptions of autism as more autistic voices are heard in the media. There is still a long way to go. As far as I know, no autistic persons’ views were heard during the broadcast debates. One parent from the Autism Hub, Sharon from the Voyage took part in a radio discussion and  made an outstanding contribution by comparison to the experts on the panel. And the Guardian did publish an excellent piece on its website by Anya Ustaszewski. I do not know if this made it into the print edition. It deserved to.

This is a short piece because I am in the midst of annual reviews where I sit down with parents and discuss their child’s progress and what we can do to improve their prospects for the future. I love these meetings. They are a chance to celebrate my pupils’ achievements and consider the wishes of both the parents and their children who all make some contribution to the meeting. Pre-natal testing will not be on the agenda.

January 21st, 2009 Posted by Mike | ethics, genetic testing, journalism | 6 comments

Measles: a non-trivial disease.

Thanks to the Gutenberg Project I have recently discovered a very old report on measles, by W. C. Rucker, Assistant Surgeon General, United States Public Health Service, 1913. It begins starkly enough with the grim statistic that 11,000 children in the USA died of measles in 1910. For those who have no memory of measles I offer this description from Rucker.

Frequently a child will go to a party and engage in innocent games in
which children are brought in close contact with one another. Perhaps
among the guests there is one with reddened, watery, eyes, which are
sensitive to light. The eyelids are perhaps a little puffy, and the guest
has a hard, high-pitched cough. The other children pay no attention to
this, and the games go on uninterruptedly. In this way a single child in
the beginning stages of measles may easily affect 15 or 20 others. This is
frequently the case when kissing games are played.

About 10 days later the children who have exposed themselves to the
disease begin to sicken. They, too, have red, watery, sensitive eyes and
puffy eyelids. In fact, in rather severe cases the whole face has a rather
swollen, puffed appearance. The throat feels parched and a dry, irritating
cough increases the discomfort. The child is apt to come home from school
feeling drowsy and irritable, not infrequently complains of chilly
sensations, and may even have a chill. At night the irritation increases,
the child is feverish, the whites of the eyeballs show little red lines
upon them, and the little sufferer has the appearance of being just ready
to cry.

If the anxious mother takes the child to the window in the morning, raises
the curtain, and examines the little one’s throat she will see that the
hard palate and back of the throat are a dull, angry red. Perhaps there
are a few little red spots on the hard palate, and if the mother will look
closely at the lining membrane of the cheek she will see some small
white-tipped, reddish spots. These are called “Koplik’s” spots, and are
one of the signs of measles.

The child is kept from school that day, and that night his fever is higher
than it was the night before. He rolls and tosses about the bed and wakes
up his mother a good many times to ask for a drink of water. This sort of
thing continues for 3 or 4 days; then, one morning when the child is
having its bath the mother sees some little dusky red spots along the hair
line. They look a good deal like flea bites. Within 24 hours this rash is
spread over the body and the child looks very much bespeckled and swollen.
In from 5 to 7 days the rash begins to fade, and within 3 or 4 days
thereafter is entirely gone away, leaving behind a faint mottling of the
skin. This is followed by a peeling off of the outer layer of the skin in
little bran-like pieces. This process is called desquamation, and lasts
about a week or 10 days.

In the meantime the fever has gone away, and as soon as the child has
finished scaling he is permitted to go out and play with the other
children, and before long is back at school. The foregoing is a
description of a mild case.

Yes, that was a mild case. He follows with a more serious case.

If measles assume a malignant type, as it sometimes does among the
nonrobust, it may be ushered in by convulsions, very high fever, and an
excessive development of all the ordinary symptoms, or the rash when it
appears, instead of being a good healthy-looking red, may be a
bluish-black discoloration which looks like a recent bruise.
Broncho-pneumonia, the most common and the most fatal of all the
complications of measles, is very apt to occur. The cough is very painful,
and death quickly relieves the sufferer.

Broncho-pneumonia is treatable nowadays but that is no reason to wish it on a child. Yet a recent comment on an article in the Times suggests precisely that. The article was a reasonable piece on the rise in measles cases (over a thousand this year so far) in the UK because of declining vaccination rates. One commenter replied:

1,000 measles cases? Trivial ! And the disease is easily treated. Your kids are more likely to be struck by lightning than to risk dying from measles, mumps and rubella. So stuff the dependency culture. And note that GPs are seriously overpaid for giving jabs.

If more people read W. C. Rucker we would see less comments like that. Do we have to wait until more people become personally acquainted with the reality of measles before we get a change in attitudes? All those people who claim that the “immuno-compromised” and those with a “genetic predisposition” are at risk from the MMR jab should consider what a full blown measles epidemic would do. Rucker again:

Measles, then, is a serious disease, sparing practically no exposed person
who has not had it. In 1846 it attacked the Faroe Islands, and the record
of that visitation is both remarkable and instructive. The island had been
free from the disease for 65 years, when a Danish cabinetmaker returned
from Copenhagen to Thorshavn with the disease. He infected two friends,
and the epidemic increased by leaps and bounds, until within a very short
time over 6,000 persons out of a population of 7,782 were attacked. Almost
every house on the island became a hospital, and the only persons who
passed through the visitation unscathed were old inhabitants who had had
the disease as children 65 years before. Not a single old person who was
not protected by a previous attack and who was exposed to the infection
failed to contract the disease.

One good thing about the Times article was that it was following a recent trend for the media to discuss vaccines and disease without mentioning autism. The MMR-autism connection seems to be thoroughly discredited with all but a few die-hards in the media nowadays. But the damage has been done and a significant number of people are now suspicious of vaccines for no good reason. The press could make some amends for its role in bringing about this state of affairs by reprinting articles like Rucker’s and reminding people of the real damage that real diseases are capable of instead of promoting unfounded fears.

December 3rd, 2008 Posted by Mike | MMR, journalism, vaccines | 5 comments

Ben Goldacre versus Matthias Rath - Victory!

I am currently reading the excellent Bad Science by Ben Goldacre. If you want  a taster I recommend this edited excerpt from The MMR Hoax that forms the penultimate chapter. This is not just about autism. Brain Gym, homeopathy, Gillian McKeith, Patrick Holford, fishoil - nearly all the usual suspects are featured. There is one glaring omission - Matthias Rath. This is the man who went to South Africa and persuaded people to switch from their anti-retroviral AIDS medication to his nutritional supplement, VitaCell. He was hoping to do a deal with the South African government whose presiedent, Thabo Mbeki, took the stance that poverty rather than HIV was the biggest factor in the AIDS epidemic in his country. He was supported by his health minister, Dr Manto Tshabalala-Msimang who blocked the supply of ARVs in favour of the healing properties of lemon, garlic and beetroot. Dr Manto Tshabalala-Msimang had previously met with Matthias Rath.

Ben Goldacre has written about Rath on his blog but some of the links are broken and Rath does not get a mention in Ben Goldacre’s book. Now we know why. For the last year Rath has been pursuing Ben Goldacre and the Guardian for libel. On Friday Ben Goldacre reported on his blog, Bad Science that

This libel case has drawn on for over a year, with the writ hanging both in my toilet, and over my head. Although fighting it has been fascinating, and in many respects a great pleasure, it has also taken a phenomenal amount of my time, entirely unpaid, to deal with it. For the duration of the case I have also been silenced on the serious issues that Rath’s activities raise, the chapter on his work was pulled from my book, and I have been unable to comment on his further movements around the world.

He also told us that  Rath had finally dropped his case. So instead of a chapter, Rath will now be the subject of a book.

For my part, I will probably now write a swift book on Rath and South Africa, as a way to make all the fascinating extra information I’ve had to dredge through useful to others, and to try and recoup something so that my time was not wasted. It will be meticulously well referenced and carefully written.

Today it was front page news in the Guardian with extensive features inside. Two articles by Ben Goldacre and an excellent leader article. Full marks to the Guardian for backing Ben Goldacre. They have been awarded interim costs of £220,000 and will be pursuing Rath for the rest of the estimated half a million pounds it has cost them to defend this action.  Let us hope that the damage to his reputation and his wallet will make him less of a threat to human health. Just how reprehensible Matthias Rath is can be judged by these witness statements from South Africa also published by the Guardian today. Here is one testimony to Rath’s crimes.

Mandla Majola is the coordinator of the Treatment Action Campaign (TAC) in Khayelitsha, a township outside Cape Town. TAC educates people about HIV and Aids:

“Matthias Rath arrived in Khayelitsha in around 2005. He opened three offices where his vitamins were distributed from. Posters were put up on the bridge, at the taxi rank and bus and train stations. The people’s understanding of Rath’s message was that antiretrovirals (ARVs) were toxic and that he was encouraging people not to take them, but to take his vitamins instead. They also understood him to be saying that his multivitamins were a cure for HIV. The posters with his messages confused people. People who were sick, but had not yet started taking ARVs became reluctant to start and others stopped the regimen. I am aware of many cases of people who have been confused by Rath and Sanco and who have lost their lives because of them.”

The Guardian also features another hero in this case, veteran anti-apartheid campaigner and HIV positive Zackie Achmat who founded the Treatment Action Campaign.

And just to bring this back on topic does anyone remember Jaquelyn McCandless MD, the retired sex therapist who became an autism expert when her granddaughter was diagnosed and is now a DAN! practitioner and author of the book, Children with Starving Brains? She has also been busy in Africa recruiting HIV positive women for a “study” into the effects of low dose naltrexone on AIDS. Two years ago she was in Liberia but that cannot have worked out because the study has moved to Mali.

Naltrexone is a recognized treatment for alcohol and drug abuse and according to Wikipedia has also been suggested as a treatment for erectile dysfunction in men and smoking in women and Crohn’s disease. Low dose Naltrexone has also been suggested for multiple sclerosis,  Parkinson’s, cancer, autoimmune diseases such as rheumatoid arthritis or ankylosing spondylitis, and central nervous system disorders. And it has also been suggested as a treatment for, you’ve guessed it, Autism.

Another brave maverick doctor with a quack cure for everything heads for Africa. I wonder if Ben Goldacre wants to write another book.

September 14th, 2008 Posted by Mike | Quackery, journalism | 4 comments