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Girl Not Against Fluoride

The CDC (Centre for Disease Control) lists water fluoridation as one of the ten great public health achievements of the 20th Century. Today, Dublin City Council will vote on whether to remove fluoride from our water supply, and when they do, it will not be because the CDC or the WHO have changed their mind about fluoridation, or because new and compelling information makes it the only choice. It will be because people who believe in angel healing, homeopathy, and chemtrails, have somehow gained the ability to influence public policy.

It never ceases to amaze me that, in matter of public health, the debate is more often informed by people who believe everything they read on the internet. Celebrities with a cause-du-jour and an audience are given more time and attention than scientists, doctors, or even just people who understand basic chemistry, and realise that not all scientific papers were created equal. It leads to invented medical scandals (such as the disproven MMR autism link), and poor decisions (such as the one the council may make tonight), and it’s really past time that it stopped.

The past few weeks have seen a number of claims made about fluoride, and I’ve been doing my best to counter them with evidence as they’ve appeared. Here are some of the most common issues presented to me every time I post a tweet using the word fluoride.

Is fluoride damaging our health?

In brief, all of the best evidence says no. Dental fluorosis is the most common side effect from fluoridated water, and it is almost always solely cosmetic. Lots of claims have been made about fluoride affecting brain development, affecting IQ, affecting bone growth – and all of these claims just don’t really apply to water fluoridation. Studies which claim to show adverse effects of fluoride are typically using concentrations of fluoride far higher than what is permitted in our water supply, and the concentration in our water supply is monitored. In high concentrations, fluoride absolutely can cause significant health problems, but these concentrations are hundreds of times more than what is currently in our water supply.

What about these countries that don’t fluoridate?

There are lots of reasons that a country may not fluoridate their water. In some cases, it is because they fluoridate alternatives, such as milk or salt (e.g. Germany, Switzerland). In other cases, it is because their water is naturally fluoridated (e.g. France, Argentina, Mexico, and many more). In still more cases, it is because the government has decided to approach dental health in a different way. No countries have yet decided to ban fluoridation because the angels told them it was a form of mind control, although Ireland seems to be teetering on the brink of gaining this dubious title.

This country doesn’t fluoridate, and their dental health is fine. What gives?

Systematic reviews (large studies which look at all of the data available) have concluded that water fluoridation results in a fewer children presenting with cavities, decreased decay, fewer missing teeth, and have concluded that it is responsible for significant cavity prevention across the population. But dental health is not a single point issue – many factors affect dental health, and water fluoridation is just one of them. Countries which have excellent dental health without fluoridation also typically have very robust dental health programs, providing free or inexpensive dental care for children, ensuring that they see dentists regularly, thus keeping the cavities down without fluoride.

More studies have also shown that dental health is highly linked to socio-economic status – in other words, families who cannot afford regular dental care, and do not have it provided for them by the state, tend to have more dental problems. Without fluoridation (and given no alternative), these families are disproportionately affected.

Water fluoridation is not a silver bullet for dental health problems, but without a dental health system which allows equal access to effective care (through school programs, subsidised or free care, etc.), it is one of the best solutions we have. Removing water fluoridation without implementing one or more solid alternatives is a recipe for disaster.

It should be my choice to fluoridate. I don’t approve of mass medication.

The mass medication issue is a tricky one, and like a lot of ethical issues, it is far from black and white. You could argue that a government has a responsibility to protect the health of its people, and that it should provide dental health care to do so (because poor dental health affects many areas of an individual’s life). And many people believe that it would be better if a government provided this through improved dental care system, and I’m inclined to agree. Where that cannot be provided, however, what is a government to do? Fluoride has been shown to help dental health, and if you agree that a government has a responsibility to do its best for the health, life, and wellbeing of its people, shouldn’t they use it?

Mass medication is an ethical dilemma– even if it is shown to benefit people, and cause little or no harm. It is a debate that needs much consideration, but it is a debate that deserves better than scaremongering tactics, false information, and outright lies.

(Edit: 1/10/14 – edited to add some some supporting info: in a 1965 court case, the Supreme Court decided that water fluoridation did not constitute mass medication. The term is inaccurate, and designed to scare people, and used here only because it is the term that will be used most often by those who oppose fluoridation. Water fluoridation is water treatment, not mass medication.)

The fluoride debate is an emotive issue, and because of this, it will probably continue to be controversial. The controversy, however, merely makes it even more important that our politicians do not bow to pressure from scare-tactic groups and appeals to emotion, but decide based on the best available evidence. And that evidence is pretty clear – just ask the WHO, the CDC, the ADA…

My name is Jennifer Keane. I studied at Maynooth University where I was awarded my BSc, and then at the Open University, where I received my MSc. I’m passionate about the truth, about science, and about education. I’m the Girl Not Against Fluoride. I won’t pose in my underwear, but I do have my very own superhero costume. It is my graduation robes, because I am qualified.

 

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Current Affairs

Dear Always

Dear Always,

We need to talk. It’s about your Always Dailies panty liners which, your advert assures me, will help one achieve hitherto unknown levels of freshness, the likes of which could never be realised by simply washing, and wearing clean underwear.

I remember the first time I saw your ad, because it was such a revelatory moment for me. You see, until now, I’ve largely gone through my life accepting the need for sanitary products around about once a month, but otherwise, simply wearing underwear as normal. Imagine that! I had absolutely no idea that my completely normal, typical bodily functions were so unclean during the rest of the month!

I mean, I was of course aware that, during a period, one should use scented sanitary products to disguise any sort of hint of natural odour, and I know that I’m always delighted when, at that special time of the month, I get to choose which strong artificial scent I’d like my groin to emanate should anyone have the misfortune to accidentally sniff me, but I simply never realised that I could enjoy that little treat all month long.

I shudder to think of all the awkward situations that I’ve put friends, family, and co-workers in by not smelling of lemon, verbena, roses, and aloe-vera each and every day. Why, I can only imagine the horror they must have felt when they realised that I was “unfresh.”

Sure, some might accuse you of trying to bilk more profit from women by marketing a completely unnecessary product, with a campaign designed to instill in women an insecurity about normal bodily function that they never had before. And yes, there will be some who may accuse you of trying to make women feel ashamed of something that they have absolutely no control over. There might even be those who point out the potentially damaging impact of a message which tells young girls and women that the way a normal, healthy vagina functions is something that is the very antithesis of “fresh”, and needs to be masked, hidden, and never spoken of.

Not me though. No, I recognise the valuable public service that you are providing, and the real usefulness in making sure that women know that just using your products during their period isn’t enough to achieve real “freshness”.

I, for one, look forward to an increased range of fresh-bringing products, and would be delighted to share some ideas with you if you’d like – the completely untapped male boxer-liner market, for example, could be a real boon. Just imagine all the men out there whose genital regions don’t smell of sandalwood, old spice, and sawdust?!

I’m so sorry to have to cut this short, but I have to go and sanitise myself. It’s been a while since my shower this morning, and I think I can almost smell my skin again.

Love and freshness!

Jen

 

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Current Affairs

Communicating Science: The sticky MMR nontroversy

It’s 2013, and almost unbelievably, the MMR nontroversy has raised its ugly head once again. Recently, a measles outbreak in Wales has left numerous people ill, and Andrew Wakefield is on the front pages declaring that he was right after all. Isn’t it time we put this one to bed? Just why is this myth so very sticky?

What follows here is a modified version of a paper submitted during my studies of science communication, so you can expect the language to be a little more academic than usual for this blog. Given that the crux of my argument is that academic language isn’t doing the job when it comes to communicating about the MMR, I’m aware of the irony…

If you want the cliff notes, here they are:

  • Parents aren’t and weren’t stupid to believe that the MMR may have a link to autism, because that was the message that they were given at the time.
  • Parents were led to believe that there was an equal amount of evidence on both sides of the debate, and that there was a sustained debate about the purported link, by multiple media accounts which opted to provide “balance” above and beyond accuracy.
  • Parents didn’t just frivolously decide not to vaccinate – they were more likely to not vaccinate, for example, if they had experience with a family member or friend’s child who had developed autism – they decided based on their experiences with autism, their worries about their children, and their understanding of the perceived debate or controversy within the medical community about the safety of the vaccine.
  • While it was necessary to debunk the false claims about the MMR, doing so by dismissing parents’ fears as irrational, superstitious, or stupid was ineffective, and didn’t address the genuine fears and concerns that parents held. (And really now, how many times have you immediately done a 180 on a deeply held belief because someone called you stupid?)
  • There were a lot of opportunities to communicate with parents, but most of the communications were instead addressed to scientists and doctors who already believed the MMR was safe. These communications weren’t clear to everyone, and weren’t accessible to people who needed information to make a crucial decision.
  • Communications that were aimed at parents often didn’t come from trusted figures, such as their own GP or health worker, but from larger institutions or organisations that the public didn’t know, and given the worries, didn’t trust.
  • And, of course, the important note – all the best available evidence says that (excepting for some side-effects, as with all medicines) the MMR is safe and effective, and that there is no link with autism.

 

It has been reported that rate of measles infections has risen dramatically in countries like the UK and France (Roxby, 2011), and in 2011, the World Health Organisation pushed back its target date for eradication of measles to 2015. The controversy surrounding the MMR vaccine has endured in spite of attempts to refute the bad science which plagues its supporters, and the effects of this are now being felt. Despite the fact that the Wakefield’s original paper (Wakefield et al, 1998) has been widely discredited, and even retracted by the Lancet (the original journal of publication), there is still mistrust among parts of the population in Europe, and further afield, and still people who firmly believe that there is a link between the MMR vaccine and autism.

In 1998, Andrew Wakefield and colleagues published a paper in the Lancet (Wakefield et al, 1998) which linked the measles virus with a bowel disorder, and then later developmental disorders, in the form of autism. At a press conference announcing the paper, however, Wakefield spoke about the MMR vaccine, linking it to autism in a way that was neither proven nor investigated by his initial paper and suggesting that individual vaccines are preferable to the combined MMR vaccine (BBC, 2008). Just one month later, in March 1998, 37 scientific experts gathered to review the evidence, and concluded that there was no evidence to support a connection between the MMR vaccine, but the damage was already done (BBC, 2008).

Though many reports have emphasised the safety of the MMR vaccine (Demicheli et al, 2012), and debunked any potential links between it and the autism, the idea has proved to be a resilient one. It is arguable that referring to the MMR vaccine as controversial lends an undeserved credibility to the suggested autism link by implying that there is still some debate about the safety of the vaccine, or that the link to autism is merely unproven, rather than disproven. Articles some 12 years after the publications of the first refutations still refer to a controversial debate which will be reignited, speculation, and suspicion (Reid, 2012).

The years since Wakefield’s controversial press conference have been characterised by a public mistrust in science, exacerbated further by incidents such as “Climategate” (Holliman, 2011), and Diederik Stapel’s data falsification scandal (Vogel, 2011). In particular, a number of high profile cases involving pharmaceutical companies hiding data (such as Roche, and their Tamiflu data – BMJ Tamiflu Campaign, 2012), or otherwise misleading the public and the medical profession about the effectiveness of their products has further served to deepen the mistrust that some groups feel towards pharmaceutical companies, and this behaviour has undermined the credibility of these companies when it comes to being completely truthful about the effects of their drugs.

Those whose trust has been damaged by these incidents need not look far to find contradictory information regarding the safety of their drugs, and in particular, regarding the MMR vaccine. Groups such as Autism Action Network maintain that the MMR vaccine does cause autism, and collect articles and information which they consider evidence of the vaccine-autism link (Autism Action Network, 2012). Their articles, filled with emotive language, sceptical of the consensus that the vaccine is safe, and painting Andrew Wakefield as a maverick who is taking on the financially motivated pharmaceutical companies, are typical of those found on websites which have sprung up to support Andrew Wakefield and his conclusion that the MMR causes autism.

The 1998 paper which Wakefield and colleagues published was a small case study comprising of just 12 subjects, and the stated subject of the paper was not vaccination, but about digestive disorders and a possible link with developmental disorders in children. Although the study did not examine the any aspect of the vaccination (i.e. the hypothesis that three separate vaccinations are safer than a 3-in-1 vaccination), the vaccine is mentioned in the results, where Wakefield notes that “In eight children, the onset of behavioural problems had been linked, either by the parents or by the child’s physician, with measles, mumps, and rubella vaccination” and “One child (child four) had received monovalent measles vaccine at 15 months, after which his development slowed (confirmed by professional assessors)”.  Though these bold statements are at the heart of the MMR controversy, they were published in a scientific paper in a paid-access journal, meaning that they might have gone unnoticed without the further media attention stirred both by Wakefield, and later by his supporters.

In March 1998, a month after Wakefield’s initial press conference (which had already been the subject of numerous newspaper articles warning about the dangers of the 3-in-1 jab – Guardian, 1998), the Department of Health in the UK convened a Medical Research Council to examine the evidence presented by Wakefield (and others), and to establish how best to advise people regarding the vaccination. The research council consisted of 37 experts in fields such as virology, immunology, child psychiatry, and gastroenterology. The report (DoH, 1998) which they produced concluded that there was no evidence of a link between the MMR vaccine and autism. Their mistake? The report started with the words “Dear doctor”.

With a report produced so soon after the initial press conference, the Department of Health, along with other official bodies, had a chance to effectively communicate to the public, and to engage with them by listening to their fears, and addressing them. Indeed, Goldacre (2008) points out that the initial reporting regarding Wakefield’s paper was quite metered (compared to later coverage), and that it was only in the following years, as prominent figures (such as The Blair family) became involved, that the scandal really began to grow, so there was ample opportunity to engage with the public and ensure that accurate reports about the safety and effectiveness of the vaccine reached the public in such a way that they could understand and appreciate.  Instead, the report they produced seems to have been done with the deficit model of science communication (PUS) firmly in mind (Serpell & Green, 2006). Rather than communicate directly with the public, the primary communication was addressed to doctors, who were to advise parents about the vaccine. The communication is well referenced, and very clear from the point of view of a doctor, but does little to address the fears of parents who were likely to arrive for vaccinations having read countless stories about the dangers of the vaccine. The communication is not one which could be handed to parents themselves to read, but rather is intended as a reference source for a doctor, so that he or she may tell parents that the vaccine is safe. The communication is based on the flawed assumption that parents, and the public in general, are waiting to be “filled up” with the scientific findings about the vaccine, and importantly, assumes that the trust between doctor and patients had not been damaged by a high profile doctor claiming that parents may have harmed their children by vaccinating them. Later studies (Casiday, R et al, 2006) have shown that parental trust in doctors was, in fact, damaged by the MMR scandal, and that, of those surveyed who had rejected the MMR vaccine, almost all (88.7%) felt that their doctors were too dismissive of parents’ concerns about vaccine side effects. In relying on doctors to relay the information, and in not attempting to engage with parents and address their concerns, the Department of Health fell back on the out of date PUS model of communication, and parents failed to respond. The Department of Health failed to realise that merely stating the evidence, and having an authority figure relay the evidence, did not adequately address the concerns raised by worried parents, and this communication failure, in part, allowed for the fears to take hold and grow. Additionally, Petts & Niemeyer (2004) note that many groups of parents, felt that they did not have the opportunity to discuss their concerns properly with their GP, and had only passive or unhelpful relationships with their GP. Combined with their observations that all the groups preferred opportunities for direct discussion of the issues, and information provision from health providers, it is not hard to see how people may have felt that the information regarding MMR safety wasn’t as clear as scientists thought. Even though participants in the study had generally low exposure to official information about the vaccine, all groups were aware of the information being presented in the media, making unprompted references to autism.

Those who supported Wakefield, and his assertions regarding the MMR autism link, were much more proactive about engaging with the public. In 2003, a made-for-tv movie called Hear the Silence dramatised the vaccine controversy, painting Wakefield in a very favourable light. Wakefield is a named character in the movie, the mother of an autistic son is a pastiche of clichés, meeting opposition from her husband, friends, and uncaring and unfeeling doctors and experts, until Dr. Wakefield explains what has happened to her son. The movie is quite heavy handed, suggesting the Wakefield’s work is being covered up because it doesn’t suit drug companies (who make too much money from the vaccinations). As noted by Aaronovitch (2003) reviewing the movie, it is pitched as a “dramatised account of the work of Dr Andrew Wakefield and his colleagues at the Royal Free Hospital in the late 1990s, and a mother’s search for what happened to her child”, the implication being that the movie is, in essence, true, even though it is, in actuality, a highly coloured and distorted piece. Importantly, however, the piece is not a paid-access journal, it is not a restrictive letter, nor is it a closed door conference. The movie portrays Wakefield as a maverick hero, the parents of autistic children as people struggling against an injustice that has been wrought upon them by evil vaccine makers, and it played exceptionally well into the fears and worries of parents in the aftermath of Wakefield’s publications. By engaging with these fears and worries, and hopes of a cure, the movie communicated effectively with parents who had autistic children, parents who were worried about the vaccine. Though the movie was inaccurate, biased, and mostly not factual, the movie engaged people in a way which the Department of Health had failed to do.

By the time Hear the Silence was broadcast, several papers had been published refuting the claims made by Andrew Wakefield, yet Goldacre (2008) notes that less than one third of all of the broadsheet articles on the MMR vaccine in 2002 referred to the growing body of evidence demonstrating the safety of the vaccine. Just 11% of the articles mentioned that the MMR was (and is) regarded as safe in the 90 other countries it is used in. Goldacre criticises not only the media, but the scientists who, with no media training, were unprepared to counter the emotional anecdotes and sensationalist press. With poor public engagement and communication by the scientists, the studies which refuted the MMR vaccine’s connection with autism were lost among stories by non-science reporters, with comments from celebrities rather than specialists, and those celebrities had plenty to say.

Some celebrities have contributed significantly to the controversy surrounding the MMR, and the media, perhaps in a misguided attempt at impartiality (Ward, 2008), often seek to “balance” a piece on the vaccine by including both an expert (typically a doctor, scientist, or other qualified person) and someone who holds a different opinion (concerned celebrities, parents of an autistic child, leader of an anti-vaccination action group, etc.).  Actress Jenny McCarthy is a vocal supporter of the anti-vaccination movement, and claims that her son developed autism as a result of the vaccine (and has subsequently been cured by a number of alternative therapies for autism). Despite her lack of medical qualifications, McCarthy’s opinion on the vaccine may hold more weight than scientists give her credit for, with a recent survey finding that approximately one quarter of US parents trust the advice of a celebrity about vaccinations (Time, 2011). The same survey showed that, while most parents (76%) do trust their doctors, a significant majority (65%) also trusted parents who said that their children had been harmed by vaccinations. By juxtaposing celebrities like McCarthy with legitimate experts, the media have not only given those who are anti-vaccination a platform, but they have also given them a boost in credibility by association, and one which they do not deserve. Quoting Offit, Gross (2009) notes that the media have helped to perpetuate vaccine myths, in presenting two sides of an issue with equal time and weight afforded, even when only one side has supporting evidence.

In 2003, Verstraeten et al had completed a study of over 140,000 children, concluding that there was no link between vaccines and autism (in particular, the vaccine preservative thimerosal, thought by some to cause autism – the preservative was removed as a precautionaery measure, even though it contains ethylmercury, which is removed relatively quickly from the body, and not methylmercury, which bioaccumulates and has been linked with developmental defecits in children). By 2004, the Institute of Medicine had finished a review of over 200 studies for any possible link between autism and vaccines, and unanimously found that there was no evidence of a causal relationship between the two. The myth persists, Kaufman (2007) argues, because of the volume of conflicting and contrasting information available. With many anti-vaccination sites presenting themselves as legitimate sources of scientific information, many parents see expert advice and conclusions as just one more opinion on the issue, assigning equal weight to these opinions as those found on the anti-vaccination sites, perhaps taking their cues from the ever-present “balance” mantra which appears to have stuck firmly with science journalists.

The safety of the MMR has been verified by numerous studies, and this message has been well communicated to the professional audience of doctors, nurses, and healthcare professionals, but it’s clear that while this scientific evidence may be persuasive to some groups of people, it may not be as effective at persuading the true target audience – parents who will decide whether or not to vaccinate their children. It is comforting to assume that facts “speak for themselves”, but this fallacy ignores the greater political, social, and economic factors and consequences of a parent’s decision.

Pattison (2001) notes that the kind of composite knowledge held by ordinary people, founded in a more complex view of reality than that experienced by scientists, is often perceived by scientists as being superstitious or irrational, and something which needs to be destroyed. He points out that ‘scientists must take care not to treat fear and reservation as ignorance and then try to destroy it with a blunt “rational” instrument’. This oversimplified notion of superstition as a guiding force for parental decisions regarding the MMR vaccine does not acknowledge the perceived risks that parents must weigh when deciding to vaccinate. Parents’ decisions on whether to vaccinate their children were not wholly informed by the scientific evidence surrounding the safety of the MMR vaccine – McMurray et al (2004) found that their decisions were informed and affected more significantly by personal experience than by scientific evidence, and that the parents perceived the risk and long term effects of autism to be much worse than the risks associated with measles, mumps, or rubella. Those parents who chose not to vaccinate their children made the choice because they knew a child or children with autism; by contrast, parents who had experienced the long term negative effects of measles, mumps, and rubella were more likely to vaccinate their children. To merely dismiss the experiences of the parents who chose not to vaccinate their children is to trivialise the concerns of parents whose fear and mistrust of the official pronouncements of safety is founded not entirely in superstition, but in their own experiences and understanding of the information communicated to them.

A significant contributing factor to the understanding of the information communicated to the public regarding the scare was the journalistic presentation of the information. In their report “Towards a better map: Science, the public and the media”, Hargreaves et al (2003), showed that it is incorrect to assume that parents were unaware of the information regarding the safety of the MMR vaccination, but that the way it was communicated did cause confusion. Hargreaves et al performed surveys which aimed to find out how opinions and understanding of the MMR controversy (and other topical science issues) changed over a period of time (approximately 7.5 months), and examined this in context with the reporting on the story. In their first survey, they found that 39% of respondents incorrectly assumed that there was an equal amount of evidence on both sides of the debate, and in their second survey, this number had risen to 53% of respondents. The application of the journalistic norm of balance is likely to have played a part in this, as information presented as “both sides of the story” did not make clear the differences in the quality of the information and, as noted by Dixon & Clarke (2013) may have lead readers to infer equal status or expertise to the conflicting views. An additional, interesting discovery from the survey was the fact that 49% of people stated that their main reason for feeling confused about scientific issues in the news was the complexity of the science issues themselves.

Bellaby (2003) also notes that parents’ behaviour regarding the MMR is not necessarily irrational – pointing out that challenge to authority (including scientific authority) is not unexpected in a healthy democracy, and that the way to deal with such challenges is not just about disseminating the best information, but about two way communication and a transparency in the presentation of evidence. Despite these observations, the message today is the same as it was in 1998, when Wakefield first claimed to have found something which caused autism – parents get their information from a wide range of sources (Time, 2011), and scientists are hard-pressed to compete with the emotional stories and appeals of parents struggling with autistic children and no hope of a cure. Baker (2008) notes that the studies which appeal most to scientists, those which are the most “elegant” are likely also the most difficult for a parent to understand, and that scientists need to find some way to make these dry, detached studies as compelling as the anecdotes and small case studies presented to support the link between autism and the MMR vaccine.

Covolo et al (2013) note that public perception of presumed risk associated with influenza vaccines was high, and that the uptake was not optimal, suggesting that there have been lasting effects from the MMR controversy in the way people perceive vaccines and public health programs. Scientists need to acknowledge the social context in which parents receive and understand the information they disseminate, and not treat any confusion or concerns as something to merely be quashed.

Often, when a new study which show something groundbreaking, or something which is in sharp contrast to the current understanding of something, it is because a mistake has been made. Whether that mistake is intentional or accidental, the process of peer-review, other scientists repeating the work and not achieving the same results, usually shows up the mistake, and the result is published in a journal. Though this self-correction is at the heart of the scientific method, it is often misrepresented by the media, and thus, poorly understood by the public. A fairly common occurrence (the publication of a paper, and the further publication of a paper which disputes or rebuffs the findings) turns into headlines which first read that “coffee causes cancer”, only to read “coffee doesn’t cause cancer” or “coffee may prevent cancer” mere weeks later, and it serves to fuel the mistrust that the public has for science in the wake of its larger and more public scandals (climategate, Vogel, etc.). Though this self-correction is crucial, it is portrayed, and thus appears, as if “science” cannot make up its mind, and can’t be trusted to get things right. Though it would serve their reader well if they did so, many science journalists are simply not sceptical enough of the press releases which land on their desks. As noted astronomer Carl Sagan says, “extraordinary claims require extraordinary proof”, and while waiting for that proof might ensure more accurate articles, it might also mean fewer revenue-increasing exclusives, scare stories, or scandals.

While it is easy to lay much of the blame for the MMR controversy at the feet of the media, scientists are not without blame. Offit and Coffin (2003) note that scientists need to change the way they communicate in order to take account of, and counteract, the way that the claims are reported. Though facts may speak for themselves in a scientific context, simply providing these facts, and claiming that if the public does not understand them that it is a fault with the media, or with the public themselves, is a reiteration of the deficit model (Mikulak, 2011), and it’s clear that it is ineffective. Time (and declining immunisation rates, along with climbing infection rates) has shown that it is not enough to conduct studies which refute Wakefield’s claims and publish the results in a press release; the story must be made compelling, emotional, and personal, as well as informative. Many scientists, however, seem to feel that it is the media who are at fault in the MMR controversy, claiming that reporting of the MMR story is what drove parents to avoid vaccinating their children (Speers and Lewis, 2004; Mikulak, 2011), but the failures in communication lie not just with the journalists, but also with the scientists who have not engaged with the public, and who seem often to base their communications on the out-moded PUS (public understanding of science) or deficit model of communication. Offit (Gross 2009) wishes that scientists would “do a better job of communicating theoretical risk and the difference between coincidence and causation. Once you raise the notion of a possibility of harm, he says, ‘it’s hard for people to get that notion out of their head.’”

I believe that, in cleaving to the PUS model of communication, in not engaging with the public and recognising and understanding the source of their concerns, and in hoping that merely providing some papers which refute Wakefield’s claims will somehow fill the gaps in knowledge and correct the deficit in public knowledge regarding MMR, scientists are as responsible as the journalists for the continuing MMR controversy. The damage done by the MMR controversy has led the public to change the way they consume scientific information, and to doubt previously trusted sources, which has manifested as doubt in other vaccines, and damaged public trust in health authorities. The health and wellbeing of children is a highly emotive, often politically volatile area, and while the media led with impassioned and heart-rending stories of damaged children, science responded with epidemiological studies.

 

References:

  • Aaronovitch, D. (2003) A travesty of Truth. The Observer. Available from: http://www.guardian.co.uk/society/2003/dec/14/broadcasting.science
  • Autism Action Network (2012). Vaccine Court: CA Boy has Autism from MMR. Available from: http://capwiz.com/a-champ/issues/alert/?alertid=62329506&queueid=[capwiz:queue_id]
  • Baker J (2008) Mercury, vaccines, and autism: One controversy, three histories. Am J Public Health 9: 244–253
  • BBC (2008). MMR research timeline. Available from: http://news.bbc.co.uk/2/hi/health/1808956.stm
  • Bellaby, P (2003), ‘Communication and miscommunication of risk: understanding UK parents’ attitudes to combined MMR vaccination’, BMJ: British Medical Journal (International Edition), 327, 7417, pp. 725-728
  • BMJ Tamiflu Campaign (2012). Available from: http://www.bmj.com/tamiflu
  • Casiday, R, Cresswell, T, Wilson, D, & Panter-Brick, C n.d., (2006) ‘A survey of UK parental attitudes to the MMR vaccine and trust in medical authority’, Vaccine, 24, 2, pp. 177-184
  • Covolo, L, Mascaretti, S, Caruana, A, Orizio, G, Caimi, L, & Gelatti, U (2013), ‘How has the flu virus infected the Web? 2010 influenza and vaccine information available on the Internet’, BMC Public Health, 13, 1, pp. 1-10
  • Demicheli V, Rivetti A, Debalini MG, Di Pietrantonj C (2012). “Vaccines for measles, mumps and rubella in children”. Cochrane Database Syst Rev 2: CD004407
  • Department of Health (1998) Measles, Measles Mumps Rubella (MMR) Vaccine, Crohn’s Disease and Autism. Available from: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4013397.pdf
  • Dixon, G, & Clarke, C (2013), ‘The effect of falsely balanced reporting of the autism–vaccine controversy on vaccine safety perceptions and behavioral intentions’, Health Education Research, 28, 2, pp. 352-359
  • Goldacre, B (2008). The Media’s MMR Hoax (extract from Bad Science). Available from: http://www.badscience.net/2008/08/the-medias-mmr-hoax/
  • Gross L (2009) A Broken Trust: Lessons from the Vaccine–Autism Wars. PLoS Biol 7(5): e1000114
  • The Guardian, 27 February 1998, “Alert over child jabs”
  • Hargreaves, I., Lewis, J. and Speers, T. (2003) ‘Towards a better map: Science, the public and the media’, Economic and Social Research Council.
  • Holliman, R. (2011). Advocacy in the tail: Exploring the implications of ‘climategate’ for science journalism and public debate in the digital age. Journalism 12(7), 832-846
  • Institute of Medicine. (2004) Immunization safety review: Vaccines and autism. Available from :http://www.iom.edu/CMS/3793/4705/20155.a​spx
  • Jackson, C, Cheater, F, Harrison, W, Peacock, R, Bekker, H, West, R, & Leese, B 2011, ‘Randomised cluster trial to support informed parental decision-making for the MMR vaccine’, BMC Public Health, 11, 1, pp. 475-485
  • Kaufman S.R, Nov. 2007 An event in the history of thought: Autism and vaccine safety doubt. Paper presented at the American Anthropological Association conference, Washington, DC.
  • Mikulak, A 2011, ‘Mismatches between ‘Scientific’ and ‘Non-Scientific’ Ways of Knowing and Their Contributions to Public Understanding of Science’, Integrative Psychological & Behavioral Science, 45, 2, pp. 201-215
  • Offit, P. (2008) Autism’s False Prophets: Bad science, risky medicine, and the search for a cure.
  • Offit, P, & Coffin, S n.d., (2003) ‘Communicating science to the public: MMR vaccine and autism’, Vaccine, 22, 1, pp. 1-6
  • Pattison, S. (2001) ‘Dealing with uncertainty’, British Medical Journal, 323, p. 840.
  • Petts, J, & Niemeyer, S (2004), ‘Health risk communication and amplification: learning from the MMR vaccination controversy’, Health, Risk & Society, 6, 1, pp. 7-23
  • Reid, S. (2012). MMR: A mother’s victory. The vast majority of doctors say there is no link between the triple jab and autism, but could an Italian court case reignite this controversial debate? Daily Mail. Available from: http://www.dailymail.co.uk/news/article-2160054/MMR-A-mothers-victory-The-vast-majority-doctors-say-link-triple-jab-autism-Italian-court-case-reignite-controversial-debate.html
  • Roxby, P. (2011, May 13). Measles outbreak warning as cases rise in Europe and UK. Bbc.co.uk. Available from: http://www.bbc.co.uk/news/health-13378119
  • Serpell, L., & Green, J. (2006). Parental decision-making in childhood vaccination. Vaccine, 24, 4041–4046
  • Speers, T., & Lewis, J. (2004). Journalists and jabs: Media coverage of the MMR vaccine. Communication & Medicine, 1, 171–181.
  • Time (2011). Jenny McCarthy, Vaccine Expert? A Quarter of Parents Trust Celebrities. Available from: http://healthland.time.com/2011/04/26/jenny-mccarthy-vaccine-expert-a-quarter-of-parents-trust-celebrities/
  • Verstraeten T, Davis RL, DeStefano F, Lieu TA, Rhodes PH, et al. (2003) Safety of thimerosal-containing vaccines: a two-phased study of computerized health maintenance organization databases. Pediatrics 112: 1039–1048
  • Vogel, G. (2011, October 31). Report: Dutch ‘Lord of the Data’ Forged Dozens of Studies. Science, ScienceInsider. Available from: http://news.sciencemag.org/scienceinsider/2011/10/report-dutch-lord-of-the-data-fo.html
  • Ward, B. (2008). Finding and projecting the voice of science and engineering. Prepared for Science in society: A Career and Professional Development Course, held at the Open University’s Walton Hall Campus, 18-20 February 2008.
  • Wakefield, A, Murch, S, & Anthony, A n.d.,(1998) ‘Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children (Retraction of vol 351, pg 637, 1998)’, Lancet, 375, 9713, p. 445
  • Wakefield, AJ. (2002), ‘Enterocolitis, autism and measles virus’, Molecular Psychiatry, 7, 3, p. 44
Categories
Current Affairs

Ireland’s Shame

In 1992, as a result of being repeatedly raped, a 14 year old girl became pregnant. Her family reported the rape, and resulting pregnancy, and made the decision to travel to the UK so that the girl could have an abortion. Aware that there is a possible need, the family ask the Gardaí if DNA evidence from the foetus will be required, and the question was referred upwards to the Director of Public Prosecutions (DPP), and further again to the then Attorney General Harry Whelehan, who, as you might expect, immediately replied to the family to assuage their fears, and reassured them in this difficult time.

Except that this is Ireland, a “Catholic country”, and that’s not at all what Whelehan did. Instead, he demanded that they return to Ireland, without harming the foetus, because a 1983 constitutional amendment reaffirmed the illegality of abortion in Ireland, and sought to further prevent any possible change to allow abortion, by stating that “The State acknowledges the right to life of the unborn and, with due regard to the equal right to life of the mother, guarantees in its laws to respect, and, as far as practicable, by its laws to defend and vindicate that right.” An initial appeal to the High Court proved unsuccessful  because the judge in question ruled that the threat to the life of the unborn was “real and imminent” and the the constitution required the the life of the unborn be protected from this threat. The family appealed, their daughter suicidal at the prospect of having to carry the child to term, and eventually, Whelehan’s decision was overturned in the Supreme Court, with the judges recognising that “a woman had a right to an abortion under Article 40.3.3 of the Irish Constitution if there was “a real and substantial risk” to her life.” The girl miscarried shortly after the judgement.

The X case was resolved in 1992, and since then, there has been a need for legislation to allow abortions to be performed if there is a real and substantial risk to the life of the mother. As yet, almost 20 years later, there is no legislation. Ignoring this need for legislation has led to further cases where women have been put in difficult situations, needing to travel outside the country, and finding themselves unable to receive advice regarding abortion. In all cases, the women needed follow-up medical care, and either did not attend due to uncertainty about the legalities of abortion, or were failed by medical staff who seemed to ingore the fact that they had had abortions.

Today, we learned about Savita Halappanavar, another woman who has been failed by the unclear abortion laws and lack of legislation regarding threats to the life and health of the mother. Her case goes beyond a need for travel, or the inaccessibility of information and follow-up medical care regarding abortion, because on October 28th, as a result of being denied a termination, Savita died.

Savita Halappanavar presented to University Hospital Galway on October 21st, when she was 17 weeks pregnant. She was suffering from back pain, and after examination, was found to be miscarrying. The doctors informed Savita, and her husband Praveen, that her cervix was dilated  that she was leaking amniotic fluid, and that the baby would not survive. The doctors also told them that the miscarriage would be over in a few hours. What followed was three days of severe pain, with Savita exposed to life threatening infection as her cervix remained dilated. After the first day, when it became clear that the miscarriage was not going to be over in a few hours, she asked for a termination. She was informed that they would not carry out the termination, because the foetal heartbeat was still present, and that “this is a Catholic country”.

Savita spent 2 more days in agony, and extremely susceptible to infection, before the foetal heartbeat finally stopped. Only at this point was the foetus removed, and although the procedure was successful  it was far too late for Savita. She died, a week after presenting at the hospital, of septicaemia which had been documented “ante-mortem”, i.e. before her death, and E.Coli (ESBL) infection.  Though Savita had pleaded with the doctors to help her, once it became clear they could not save the baby, her husband says she was repeatedly told that there was nothing they could do because the foetus’ heart was still beating. When told that it was the law, and that this was a Catholic country, Savita pointed out that she was neither Irish nor Catholic, but the doctors maintained that there was nothing they could do, and so, while Savita succumbed to infection, the doctors did nothing.

Earlier this year, Cardinal Seán Brady said that the Chruch would lobby the government if there was any attempt to legislate for abortion, and indeed, on the same days as Savita’s story appeared in The Irish Times, a letter from the Bishop of Killala, John Fleming, reminds us that ” for Catholics is that the life of the unborn can never be taken intentionally”, and that “Ireland, without abortion, is recognised as one of the safest countries in the world to be a pregnant mother.” Fleming also pays lip service to that old chestnut that the law in Ireland wouldn’t prevent a mother getting the care she needed, reminding us that even though we should “Choose Life!”, that “Clearly, if the life of the mother is threatened, by illness or some other medical condition, the care provided by medical professionals will make sure that she receives all the medical care needed.”

Bishop Fleming needn’t worry. Rather than come down on any one side of the abortion debate, our elected officials have been avoiding the matter for over 20 years now, and seem determined to continue doing so. Referring to the impending publication of a report regarding Ireland’s abortion legislation, recently one minister said “I hope that report doesn’t come for 10 years, but it’s coming and we’re going to have to deal with it,” and for me, this neatly encapsulates how our elected officials feel about this issue. Rather than fighting for women’s rights, or attempting to finally resolve the decades long outstanding legislation, they hope that the report doesn’t come, so that they don’t have to deal with it. Rather than seeing the report as an opportunity to codify something which has been missing from our law for an embarrassingly long period of time, they see it as something that they are stuck with, that they must reluctantly deal with.

Abortion in Ireland isn’t a right, and it isn’t a privilege. It isn’t even a choice. It’s a political football to be kicked around at times like these, a hot potato that no party wants to be left holding. The cowardice of our elected officials in ignoring the 1992 X judgement, in hoping that the problem would simply go away if ignored for long enough, is something which should not be forgotten. The A, B, and C cases, the X case, and now Savita; all victims of our compassionate, humane, “Catholic” country.

Categories
Current Affairs Science

Balancing act

What would you do if someone claimed that, because of “geopathic stress”, moving your bed could be the key to avoiding cancer? Well, if you’re the Irish Independent, you give that someone the most prominent picture and article space in a section about cancer prevention and treatment, with the bold headline “The truth about avoiding cancer”.

The man in the picture holding the magical pieces of wire is Brendan Murphy, and the article is little more than an advertising piece for his company, Positive Energy. Though the piece starts promisingly by pointing out that geopathic stress is “an area that is still open to debate”, sadly, it fails to deliver that debate. Instead, the reader is treated to a number of claims with a dearth of supporting evidence.

  • By ‘dousing’ (an ancient practice of using two wires to find underground waterways) Brendan can identify where water runs under a house and has found a strong correlation between that and illness.
  • If you’re constantly waking tired and unrefreshed it could be a sign that you’re sleeping over geopathic stress.
  • There’s a growing interest in how geopathic stress or ‘sick building syndrome’ affects health, with planners in several countries now considering geopathic stress lines when building houses. 
  • On the basis that electromagnetic waves affect the body’s ability to restore itself during sleep, Brendan advises also keeping mobile phones and electricity boxes an arm’s length from the bed – as well as keeping WiFI switched off at night.

The piece neither provides, nor suggests where you might find evidence to support the claims about Murphy’s dousing abilities (or anybody’s ability to accurately douse), or why electricity boxes and wifi might prevent your body from “restoring itself”, and if you found yourself wondering what planners are interested in geopathic stress lines, and how they could possible hope to avoid them all if they are as prevalent as claimed, you are not alone. A quick search through any academic database will cure what ails you – geopathic stress turning up only in low quality journals and those that focus on complementary and alternative therapies. Whatever strong correlations Murphy claims to have found between illnesses and these imaginary stress lines, it certainly hasn’t been documented in any research papers.

Continuing to largely ignore the seemingly fictional nature of the piece, the author concludes that there has been “little investigation into the area, but if something as small as changing where you sleep, or moving your phone, might impact on your health it could be worth thinking about.” A statement of equal legitimacy might be “there has been little investigation into the area of alien-induced head colds, but if something as small as wearing these protective alien UFO blocking nose plugs might impact on your health, it could be worth thinking about”.

Further down the page, nestled between largely sensible articles from an Irish Cancer Society representative and a dietician, Dr. Aileen O’Kane, now an Ayurvedic practitioner tells us that “if the digestive system is overtaxed the immune system is compromised and can’t gobble up the cancer cells that the body is always producing, the way it normally would”, and in a nod to the thoroughly debunked “alkaline diet” craze, that “Many people who have cancer have excess acid in the body.” The conclusion, highlighted for you in a section of its own, is to “keep acidic foods to a minimum”. O’Kane believes that any illness, including cancer, is the body’s warning sign that our lives are out of balance.

Our lives aren’t the only things suffering from a lack of balance – increasingly, in the name of journalistic balance, legitimate and accurate information is overshadowed by misleading quotes and scaremongering by those brought in to “balance” the piece. It’s one thing to include dissenting opinions when discussing the latest trend in fashionable shoes, or whether some movie lives up to the hype, but medical science isn’t about which opinion is more popular or compelling, it’s about evidence.

These articles might pay lip service to the lack of evidence by saying things like “still up for debate” or “Dr. Someone  believes that”, but placing these articles next to pieces by legitimate medical professionals lends them a degree of credibility which they often don’t deserve. When articles like these are published, the trust that is placed in well-respected and nationally read newspapers such as The Irish Independent is extended to the people who make claims about alternative therapies. They are claims that shouldn’t be trusted, claims for which they should have to provide evidence – but the mere fact of publication often means they don’t have to.

Every time an author discusses serious medical conditions like cancer, and decides that appearing to be “neutral” is more important than reporting accurately, they perpetuate the idea that alternative and unproven therapies are as legitimate as proven ones, and that when it comes to treating these conditions, everyone’s opinion is equal, even if those opinions come with no pertinent training, no supporting evidence, or an eye-watering price tag. Encouraging people to “think about” these alleged cancer causes and prevention methods essentially encourages baseless worry, reaching down to a fear of terminal illness and death that we all possess, and as no effort is made to draw a distinction between the sensible advice (eat a healthy, varied diet) and the more ridiculous advice (magical invisible lines under your bed), the overall impression one is left with is that each of these “truths” about cancer prevention are equally valid. Alternative therapies are alternative because they have either not been proved to work, or have been proven not to work, and including these therapies, simply so that you can call your piece balanced is irresponsible to the point of dangerous – a lesson which The Independent sorely needs to learn.

Categories
Current Affairs Science

Scapegoats and quackery

““The search for a scapegoat is the easiest of all hunting expeditions.” – Dwight D. Eisenhower

Quack clinics are often quick to claim their victories, with the smallest improvement in a condition being hailed as irrefutable proof that the treatment works. When the treatment fails, however, and there is blame to be apportioned, it seems that everyone and everything but the treatment are to be targeted.

A few days ago, we heard about Olivia Downie, who sadly has become so ill that she is unlikely to live. Her family raised money to send her to the Hope4Cancer Institute in Tijuana, Mexico, so that she could receive Sono-Photo Dynamic Therapy. The unproven  treatment uses light and sound to fight cancer, and is not generally accepted as an effective treatment for cancer. The expense, difficulty, and stress of travelling to Mexico have been compounded for the family, as the treatment has not worked, and Olivia has deteriorated significantly. She is now too unwell to fly home without medical assistance, and will need a chartered flight with specialist care if she is to be brought home before she dies.

This is a story which is all too familiar for many who read about alternative cancer treatments – though we are told at great length about the alleged successes of the treatment, more often than not, a family spends all that they have only to be separated from their loved one, and to potentially see them die alone in a foreign country. Several articles appeared today, detailing the fears of her parents that her life support machines will be turned off, because of delays in paying their medical bills. Surprisingly, instead of criticising the clinic for what is despicable, bullying behaviour, the blame has been placed at the feet of NatWest, saying that their banking problems, which caused delayed payments and account issues, are threatening Olivia’s life.

The Daily Mail opens their article by talking about the “innovative”,”life-saving”, “specialised” treatment, and gives no mention to its unproven nature (barely mentioning the fact that the treatment hasn’t worked). Later, we are told that the hospital deny making this threat, but that denial has come after a rushed payment was arranged by the family at the weekend.

 

 

The Daily Mail article quotes the mother as she spoke to the Telegraph, and the article which appears in the Telegraph is similarly uncritical of the clinic and the treatment, and eager to lay the blame with the banks.

 

The Telegraph is happy to tell us about the “life-saving” treatment which Olivia received at the Mexico clinic, and though Olivia’s mother, Linza, is quoted as saying that you “can’t blame the banks. It was bad timing, it was one of those things”, the Telegraph (among others) seem to be quite happy to blame the bank for threats to Olivia’s life support machines. In fact, as more articles appear, the focus seems to be on the role the NatWest problems may have played in the transfer of funds, and on nothing else.

I can only imagine how difficult and upsetting this time must be for Olivia’s family, but this doesn’t excuse the lazy, uncritical reporting which will almost certainly draw more attention to the clinic. The treatment doesn’t work, and it hasn’t been properly tested or proven. Andy Lewis blogged about Olivia, including a video which shows the doctors promising results that they cannot hope to achieve, lying about the effects of chemotherapy, and the effectiveness of their treatment, and articles discussing the treatment have been at best uncritical, and at worst, complimentary.

When a lone maverick sets up a clinic, because he or she has been persecuted by the mainstream medical community and Big Pharma, because they have a simple, non-toxic cure for all cancers, it all sounds a little bit too good to be true, and that’s almost invariably because it’s not true at all. The Hope4Cancer clinic is another example of this, and once again, the uncritical reporting serves only to harm the public. NatWest haven’t threatened the life of this little girl, the clinic which promised a cure based on wishes and dreams, and then threatened to pull the plug for purely mercenary reasons are the ones who should be at the receiving end of any backlash forthcoming, as they alone are responsible for what has happened.

Categories
Current Affairs

Burzynski and Patient Choice

It’s difficult to know where to start a post like this, perhaps because I most often start my posts by noting something which has been asserted as fact, and then proceed to debunk it. This post is about Burzynski, a subject which is becoming increasingly hard to write about, because two issues – namely the validity of the treatment (incorporating Burzynski’s practices, honesty, publication, etc), and the patients being treated – have become so entangled that it is difficult to discuss one without treading on ground covered by the other. Last week, after being contacted by a tweeter who asked me some leading questions about Burzynski, I tweeted the following messages:

 

This sparked a series of messages (excerpts of this particular exchange can be seen here, many examples can be seen by simply searching for #Burzynski on Twitter) the general form of which have become par for the course for any people critically discussing Burzynski on Twitter. It isn’t long before I am being asked to comment on specific patient cases (in this case, Laura Hymas of HopeForLaura), and before that specific patient is drawn in to the conversation. Despite the fact that it was a supporter of Burzysnki who originally began to include Laura in the conversation, it quickly becomes a case of “skeptics attacking a patient”.

Though I suspect our reasons will differ wildly, there is one point on which myself and @BurzynskiSaves agree on here – it is all very sad indeed; a conversation which started about a treatment, and the need to publish data, has devolved into mudslinging with patients and supporters.

Stanislaw Burzynski & Antineoplastons

At the heart of all of these exchanges are the questions of validity, honesty, and integrity – does Burzynski’s treatment work as advertised, is he being honest about the protocols that he is using and the results he is getting, and is it correct for him to be operating as he does. At the risk of treading over old ground, I do not currently believe that Burzynski’s treatment works as advertised. However, this belief is not because I blindly believe whatever the FDA tells me, or because I want to help suppress a revolutionary cancer cure; it is because I have examined the evidence presented to me, and concluded that it does not support the assertions that he is making. Burzynski’s website tells us that he discovered antineoplastons in 1967, the same year he graduated. It also tells us that he founded his clinic and began treating patients in 1977. Burzynski’s resume notes that he made a presentation on April 9th, 1988, in Kurume, Japan, at the Kurume University School of Medicine. The title of this presentation was “Clinical Results of Antineoplaston Therapy”. In order for such a presentation to be made (assuming that the details about the presentation are accurate), there would have to be clinical results, and in order for there to be results, there would have to be clinical trials. One can postulate, then, that Burzynski began trying his antineoplaston therapy, in humans, at some date before the presentation. It has been approximately 45 years since he discovered antineoplastons, approximately 35 years since he began treating patients with them, and approximately 24 years since that first presentation in which he discussed the clinical results of his treatment. This is an extremely long time to be testing a treatment without publishing significant results, moving further through the trial process, or reaching a stage where the product can be marketed to the general public. The FDA estimates that it takes approximately 8.5 years for a new cancer drug to reach the market, from inception, through trialling, and to delivery. This 8.5 year timeline includes laboratory and animal testing. The FDA have recognised that some drugs are a priority, and have even made special processes available to try to shorten this timeframe further, to allow patients to benefit from lifesaving drugs. Even allowing for extra time in laboratory development, typical delays in the process, and other factors, 45 years is an extremely long time for anyone to be trialling a drug, especially one with such astonishing results.

There have also been some questions raised about the honesty of Burzynski, and this is of particular importance when it pertains to his treatment protocols. Patients go to Burzynski when they have no other treatment options available, or when those treatment options available have proved unsuccessful or too dangerous. They do so because what Burzynski advertises is a targeted gene therapy using his antineoplastons. I suspect that many are not expecting to be given chemotheraputic drugs as part of their treatment, and it is certainly not something that is featured prominently on his website, but Burzynski isn’t just treating with antineoplastons – he’s often prescribing multiple chemotheraputic drugs for off-label use, at highly inflated prices from his own pharmacy. One patient blog talks about Afinitor and Votrient, and mentions that the patient is taking a combination of five off-label chemo drugs, along with the antineoplastons. This is not the only mention of Afinitor, there are numerous comments (scroll to comments for those) and patient blogs which mention that they are taking this (and other) chemo drug in addition to the antineoplastons. This couple maintain that they were not told that some of the drugs were chemotheraputic drugs, and that taking those drugs has cause problems with eligibility for other trials (though I am uncertain of the veracity of this site). Though the Burzynski clinic website prominently features the antineoplastons as the cure for cancer, it seems that many (if not all) of the patients are being given traditional chemotherapy in addition to the antineoplastons.

Finally, many have questioned Burzynski’s integrity, due to the prices of treatment at his clinic. Reported prices vary, but are generally in the tens of thousands per year of treatment. The FDA permits charging during clinical trials under very specific circumstances (related to investigational drugs), though it does not regulate what is charged. The FDA permits the charging so that drug manufacturers can recover the costs for making these drugs while trialling them. Although one patient blog mentions that the charge is not for the trial but for “case management” (suggesting that they are not being prescribed under this investigational drug regulation), it is possible that things have changed since this blog (and indeed, the law changed to allow for charges around the time of that blog). One can only speculate what it costs to produce antineoplastons, though Burzynski sells capsules containing antineoplastons for approximately $1 per capsule (0r $0.78, if you buy in bulk), though Burzynski seems to make most of his cash charging inflated rates for case management and off-label chemo drugs.

Data is important

It would be more than a little hypocritical of me to point out the fallacy of ad hominem attacks, and then base my own criticism of Burzynski solely on personal actions which are questionable. Whether or not Burzynski is himself ethical, honest, or even nice, if he has developed a miracle drug, he has as much right to trial it as anyone else (and even to be lauded for his discovery). Though I don’t like the stories which suggest dishonesty, they are just stories, and are as liable to bias as the patient anecdotes that “skeptics” dismiss as “not proof”. One thing which is more telling than any stories, and the point which should be focused on, is the lack of any real data to support Burzynski’s treatment. Though his website has many patient anecdotes and success stories, there are also plenty of examples where the treatment did not work, and as he seems to exclusively list success stories, they can not be counted on as reliable evidence. Most articles about antineoplastons published in scientific journals have been authored or co-authored by Burzynski himself. When people use these to point out that he has published data, they overlook the mediating factors – namely that the research hasn’t been replicated (to any significant degree) by completely external researchers, and that the journals in question are often considered poor quality. When it comes to drug development, data is king – this is simply the application of the scientific method. An assertion must have the data to support it, or else it should be considered false, and in this case, the data to support it is not reliable. It is true that there have been cases where data has been withheld from the FDA, and where drug companies have behaved unscrupulously – I absolutely won’t claim that “big pharma” is perfect – but these cases do not override the need to produce data which supports your assertion that your treatment works.

Patient Choice & Informed Consent

It has been said to me that patients don’t care about data, they care about people. They speak to people treated by Burzynski and they are given hope, and hope is the most important thing. It would be easy to keep discussing Burzynski in a very detached way, focusing only on the data (or lack thereof), but for many, this discussion is too shallow, because there are patients involved, and those patients have families and friends, and a whole host of people who would give anything for them to be better again. More than this, the patients have been drawn into the discussion, either willingly or unwillingly, and for them, attacks on Burzynski must often seem very personal, for a number of reasons.

One issue that is often raised is that of patient choice – the right of a patient to chose their treatment without criticism. Cancer treatment can be brutal, and even though treatments have improved, and the side effects are more manageable than before, there is an undeniable effect on the patient. Sometimes, patients decide that the side effects of the treatment outweigh the potential gain, and either decide to seek no more active treatment (e.g. pursuing palliative care only), or decide to seek an alternative, whether it be conventional treatment in another country/hospital, or an alternative therapy. Patient advocates, and Burzynski supporters, all maintain that patient choice is important, and I’m inclined to agree. I imagine that, if I were very ill, and the chances of a cure were not good, I would like the ability to choose whether to pursue further treatment. I wouldn’t like to deny this choice to anyone, but what I would like is for that choice to be based on the best information possible.

People say that patients don’t care about data, journals, and FDA squabbles, but even if that is true, patients do deserve the truth about their treatment, their prognosis, and everything associated with it. A patient has every right to choose alternative medicine over conventional treatment, but it is a poorly informed choice if it is based on informercials, advertising websites, and unproven claims. The fault, and the criticism, lies not with the patient, but with those who would prey on people when they are feeling vulnerable or desperate. Scientific papers are often dry and inaccessible (both because of the content, and because of the expensive paid access required to read them), and it is not as easy to relate to data points on a graph as it is to relate to a named patient, with an adorable picture and a heart-warming cure story. Quacks know this, and use it to manipulate people, helping only their own bank balance, and often leaving families devastated when the promised cure does not come about. I have been accused of attacking patients seeking Burzynski treatment, of wanting to deny their freedom of choice, or take away their last hope; this has never been the case. I don’t attack patients because I am aware of how difficult it is when a family member is sick, and when the treatment is difficult. I don’t attack patients, because I believe the blame should be laid squarely at the feet of those who manipulate and deceive patients.

A final, thorny issue is that of fake patients. Even as people call for Burzynski to publish data, there are various patient blogs reporting successes and shrinking tumours, and a multitude of patient anecdotes and youtube videos featuring people who were given a very poor prognosis, and have lived far longer than expected. Whenever Burzynski is discussed, these patients are mentioned as proof, and I have more than once been asked to comment on specific patient cases, or asked if I am, in criticising Burzynski, calling these patients fakes, shills, or liars. The truth is, I can’t comment on these cases, because I just don’t know the circumstances. I am not privy to medical treatment details, personal information, or anything like it. I see the information that is made public by the patients and nothing more. I am glad to know that there are people beating the odds, living longer than expected, and even going into remission where before there was little hope for a cure, but I can’t say what causes these events any more than a Burzynski supporter can claim them as definite proof of efficacy. I would certainly prefer to believe that we do not live in a world where people pretend to have terminal illnesses to make money, sell a treatment, or otherwise deceive people, though I know there are those who have. Asking me to comment on patient cases is ultimately fruitless – I have no way to know if people are legitimate, or if they are telling the truth when they update their blogs – and, importantly, my quibble has never been with the patients. If there are people acting as paid marks for Burzynski, then they are doing something which my conscience would not allow me to do, but they are ultimately in the employ of Burzynski, and this is where the buck should stop.

This is not, and has never been, about me wanting to take away hope, or be malicious to patients. The onus is on Burzynski to publish data to support his claims, and I believe that patients are entitled to know what data there is (or is not). Patients deserve real information to help them make their treatment choices, they do not deserve to be manipulated or lied to. This has only ever been about one thing: information. Patients deserve information, not infomercials.

 

Categories
Current Affairs Science

It’s Burzynski, Jim, but not as we know it.

Stanislaw Burzynski has been in the spotlight for some time now, and if you’re reading this, there’s a good chance that you’re already aware of the controversy surrounding his alternative cancer treatment: Antineoplastons. Burzynski claims unheard of success rates with his treatment, and his website is full of testimonials from patients who say they have been cured of incurable cancers. Given all of the publicity, one might be convinced that Burzynski has just one string to his bow, but it seems that we may have been too quick to judge. Cancer patients can allegedly benefit from antineoplastons, but it seems that we can too.

Aminocare is the genetic solution to anti-ageing, brought to you by the Burzynski Clinic. It will solve all of our ageing problems with a whole new approach which focuses on genetics. As there are a whole host of problems associated with advanced age, many of them more significant than wrinkly skin, something which could combat these problems at a genetic level could be revolutionary – imagine a world free, not only of cancer, but of Alzheimer’s, for example.

Aminocare Brain Longevity Supplement is marketed as possibly preventative of Alzheimer’s (yours for the bargain price of $60 for 60 capsules!), and two of the ingredients stand out as significant. The first is curcumin, a compound which is part of the tumeric spice. Curcumin is the subject of ongoing trials because it has demonstrated some promising results in animal and in vitro studies, and it is true that in animal tests with transgenic Alzheimer mice, there a marked reduction in the plaques and inflammation which are characteristic of Alzheimer’s. So why aren’t we using this revolutionary treatment in humans? Simply, because we are not mice. Mice and humans absorb curcumin quite differently, resulting in drastically lowered amounts of free curcumin (that is, curcumin which has not bound to another molecule as part of metabolic processes) in humans. Curcumin which has bound to another molecule (most often glucuronic acid) can not pass through the blood brain barrier, and thus, cannot target the plaques and inflammation. Because we are aware that curcumin is absorbed differently, much research has been done on combining curcumin with other compounds, to try to increase the absorption. One such compound is found on the ingredients list: piperine.  A note in the product information tells us that piperine is something which increases the absorption of curcumin, and piperine was one of the first compounds tested which appeared to increase the bioavailability of curcumin. However, the overall levels of curcumin absorbed still do not match those seen in prior animal testing. There are some compounds which appear to be performing well in making curcumin absorb more readily, but those compounds are still in the early stages of testing, and piperine is not one of them. The inclusion of that animal test titbit in the product information is a subtle ploy; even though it is technically true, it is not the whole truth.

The second ingredient which caught my eye was “Glutamine Derivative (PG)”, which is described in the product information as a proprietary amino acid derivative phenylacetylglutamine. If you think that looks familiar, you’d be quite right – Burzynski says that it’s the active ingredient in A-10-I, one of his antineoplastons, which apparently cure Alzheimer’s as well as cancer.

Not content with ridding the world of cancer and degenerative  brain conditions, Burzynski also wants to tackle the scourge of make-up wearers everywhere – ageing. With Aminocare A10 Dietary Supplement, you can genetically slow down ageing. That’s powerful stuff (especially as there is still a ways to go before there is certainty about the genetic causes of ageing), let’s take a look at what’s in it. A10 Dietary Supplement claims to be a blend of amino acids, vitamin B12, and our old friend L-Glutamine Derivative (a.k.a. Dr. Burzynski’s proprietary ingredient, a.k.a. antineoplastons). Below are some of the claims made by this product, and I have highlighted some pertinent information:

A10 Supplement Claims

 

Absolutely none of the statements made about the efficacy of the product have been verified by an external body. This should be enough to make anyone very wary of spending money on such a product ($120 per box!), but if that’s not enough to give you pause for thought, a sidebar note about the product certainly should:

A10 Pic and Blurb

Aminocare A10 slows down the ageing process by gene expression modification. This is hinted at in the product description (“aids the regulation of normal cell division”) and is stated in the sidebar advertisement for the product (pictured left). This over-the-expensive-counter, completely untested, unregulated, and unverified capsule is going to stop you ageing by messing with your gene expression. How will it do this? Presumably, with the magic of antineoplastons, which are advertised as targeted gene therapy, because they “turn off” the “cancer genes”.

Perhaps you, like me, do not relish the thought of swallowing tablets. Never fear, as you may modify your gene expression and stay looking young simply by rubbing antineoplastons onto your skin.  The two antineoplaston ingredients in the  Aminocare Cream and Lotion cream “may restore the proper balance in gene expression” by turning off ageing genes, such as the icky wrinkly gene, and turning on other genes (such as the forever young gene) which are silenced during the normal ageing process. I have used chemicals in the lab which had the potential to mess with your genes and they are, in a word, scary. They are not something I would be in a hurry to smear all over my skin, so it is a very good thing that antineoplastons have an in-built identifier to know which are the “good” genes, and which are the “bad” genes.

A substance which claims to cure everything is called a panacea, and if you investigate this word, it’s likely that the only cures you’ll find are mythical ones, such as the philosopher’s stone, or the elixir of life, and this is not an accident. Throughout history, people have touted various substances as panaceas (tree sap, silver, mercury,etc.), and they have all been proven false. The truth is that we suffer from diseases which are so diverse that there is no one substance that could hope to conquer them all. The patter has changed, the terminology is littered with pseudo-scientific jargon, but the message is still the same. Come one, come all – you can inject them, eat them, or even just rub them all over your body. Antineoplastons are good for the soul!

Categories
Current Affairs Science

Curing Canine Epilepsy with Starvation

Pets can be wonderful companions, and the (often unconditional) love they provide can really lift your spirits when things are dark and difficult. Most people want to repay that joy by giving their pets the best training, toys, and food that they can, and for food in particular, the average pet owner is spoiled for choice. A popular pet food in the UK and Ireland is Burns, and make no mistake, it is legitimately popular, because it is a good and well-liked food. The person responsible for Burns Pet Food is John Burns BVMS Lic. Ac. MRCVS, a veterinary surgeon, and in addition to offering a range of foods, he and his team also offer nutritional and health care advice for your pets, and this is where I must sadly become less complimentary.

Burns Pet Food advertises itself as a holistic pet food, and offers advice on its website about holistic health care for your pets. The principles upon which this health advice is based are:

  • Good health is the normal state.
  • The body will tend towards a state of good health.
  • Healing will take place if it is possible.
  • Acute illness is a sign that the body is trying to heal itself.
  • Chronic illness is the result of failure or suppression of the healing process.

These principles raise alarm bells immediately for their similarity to a number of alternative medicine principles – namely the “healing crisis” myth (common in many CAM therapies, but homoeopathy and chiropractic in particular), and the idea of “optimum health” (common in many CAM therapies). A brief look into Burns’ “Guide to Natural Health Care (PDF)” provides a history of his education, and it becomes clear where these ideas have sprung from:

[…] A few years later, having read some impressive reports about acupuncture I decided to become an acupuncturist. The two-year course on Traditional Oriental Medicine attempted to unite ancient principles of health to our Western way of life. During this time I came to realise that acupuncture suffered from the same important shortcoming as modern medicine – the illness itself was being treated but the treatment did not address the cause of the problem.

At the same time I became a Student of the Macrobiotic movement which was in great vogue in Britain in the seventies but which has now virtually disappeared from view (in the UK at least). Macrobiotics attempted to apply and adapt ancient, traditional philosophy in a way which was practical and appropriate to our modern lifestyle.

At first, the advice given in the guide – based mostly around the idea that a balanced diet is best – seems sound. It isn’t long, however, before we tread into the nebulous region of “toxins”, and their effect on the body. Though the guide does not detail the toxins in question, it assures us that a build-up of these toxins (often a result of poor diet) can cause all sorts of illnesses, from hepatitis to heart disease. I asked Burns what these toxins were, and received some notes on the production of toxins, and a brief definition:

“Toxins” are
1.) The waste products of normal metabolism but which are produced to excess, in the form of mucopolysaccharides, cholesterol and fatty acids., urea.

2.) Pollutant chemicals which are absorbed from the gut, lungs, even through the skin.

3.) Bacterial endotoxins

4.) Ammonia from bacteria and protein metabolism

5.) Products of cell damage (inflammation, infection, free radical production)

6.) The products of fat oxidation i.e. rancid dietary fat but also oxidation of body fat.

These are the sorts of toxins that are regularly mentioned when discussing detoxification and the associated idea of optimum wellness, and they certainly sound legitimate, but even a cursory examination of the claims is enough to begin to debunk them.

Cholesterol, urea, and other chemicals/compounds/particles/etc can build up in the body and cause problems, but this is often something associated with other, more severe medical problems, rather than the cause of them. High levels of urea in the blood can cause a number of problems, such as vomiting, weight loss, etc., but high levels of urea are most often a result of kidney failure – something which is not caused by dietary (or process waste) toxins. Pollutant chemicals have a hard time affecting our bodies, because they must first pass through a number of barriers. The skin is our first line of defence against disease and “pollutant chemicals”, providing an excellent barrier which keeps out a tremendous number of substances. It keeps out any and all particles that are larger than ~40nm in diameter (pretty small!). Indeed, the development of transdermal patch medications has been limited as a direct result of the fact that many molecules (medicinal or otherwise) are simply too large to pass through the skin (and even if they do, they are diffused within the first few layers, before the molecule reaches the bloodstream). The gut is regularly assailed with foreign material, pollutant chemicals, and indeed, food, but before anything reaches the intestines (and absorption), it passes through the stomach. The low pH of the hydrochloric acid effectively kills many common bacteria, and anyone who has ever had the unpleasant experience of having food poisoning can attest to the body’s ability to expel matter that it believes damaging. These systems are not infallible, but nor are they the paper-thin,  sieve-like defences that many alternative medicine practitioners would have you believe. Dietary and stored body fat can be harmful to health, if there is a large amount of it, but it’s not “toxic”. Nor are the products of fatty acid oxidation, which is part of the process of using stored fatty acids for energy. As for the products of cell damage, protein metabolism, and other body functions, any waste material is processed by the body itself.

Just about the only really scary toxin on that list are the bacterial endotoxins – even very small amounts of them can cause severe illness in humans, and the majority of septic shock cases are caused by endotoxins. They are genuinely toxic, but so much so that no adjustment in diet will prevent them from affecting you (or your pet) . I strongly suspect that this particular entry made the list simply to add gravitas to the rest of the entries, because a pet food, no matter how good, will not prevent septic shock, and septic shock does not cause many of the “signs of elimination” discussed later in the guide (and this blog). The “toxins” listed above (even the bacterial endotoxins) do not build up in our body as a result of poor diet, and nor can they be controlled by diet. They are the waste products of normal bodily functions, or things that we encounter daily in our diet, but because of the functions of our liver, kidneys, digestive tract, skin, and other organs, we simply don’t experience toxin build-up unless there is some sort of more serious problem (e.g. kidney or liver failure, genetic disorders, etc.), and if a more serious problem exists, it’s unlikely that dietary change alone will fix it.

The guide, goes on to talk about the development of disease, stating that “as the build-up of toxins continues, the major organ systems will start to show signs of degeneration and failure. […] One may encounter: Heart Disease, Kidney Disease, Diabetes, Tumour formation”. This is a perfect example of putting the cart before the horse – toxin build-up doesn’t cause kidney disease, kidney disease results in build-up of chemicals such as urea. We’re also told that arthritis and rheumatism are caused by muscle tension which is due to:

(1) the accumulation of waste metabolic products in the muscles.
(2) weakness of a major internal organ system. This is a viewpoint which will be familiar to students of acupuncture, but suffice to say that certain muscles relate to specific organs e.g. a weakness in stomach function affects the muscles on the front of the (hind) leg or the lumbar muscles at the level of the stomach.

This, as you might expect, is in sharp contrast to the stated causes of arthritis, as you might find them in a biology or medical textbook – damage to the joint from disease, wear and tear, or in the case of rheumatoid arthritis, inflammation in the joints causing swelling and destruction of cartilage. There is a disorder which does cause joint pain as a result of things building up in the joints, but that’s not arthritis, it’s haemochromatosis.

Throughout the guide, there are plenty of mentions of toxins, and their underlying role in all aspects of animal health. It seems that most conditions are merely “signs of elimination” – the body getting rid of all of these toxins (for example, the warmer weather draws toxins to the surface of the body, which is what causes dogs and cats to moult – a sign of elimination. This is how they expel toxic waste matter.). Ultimately, the main message seems to be that good food will solve a number of behavioural and health problems, and I’m certainly not averse to anyone feeding their pet good food, but I draw the line at questionable medical advice. Moulting (and it’s causes) might not be the most life-threatening  or dangerous condition, but it’s not long before the guide reaches more serious conditions. Approximately half-way through the guide, I came across the following paragraphs, which so shocked me that I was rendered speechless:

Holistic Medicine views epileptic fits as a process by which excess energy is discharged. Generally, excess energy is discharged by increased mental and physical activity – hyperactivity or excessively boisterous behaviour. […]

Holistic treatment of epilepsy is by feeding a diet which is hypo-allergenic, chemical-free, low in protein and fat, and high in complex carbohydrate (brown rice is best for this). It is essential that the quantity of food meets but does not exceed the dog’s energy requirement.

Epilepsy is because you feed your dog too much, and it has excess energy to get rid of.

I can’t think of a more irresponsible thing to say to a pet owner, or a more irresponsible behaviour to encourage. A dog developes epilepsy, the owner thinks the food is exceeding the dog’s requirements and feeds less, the dog continues to have periodic fits, the owner continues to reduce the food given to the dog. I enquired as to whether there was a study I could read which might support this connection between overfeeding and epilepsy, and received the following from John Burns (via another staff member):

There is no source for this; it is my simply me musing on the nature of holistic health based partly on my understanding of traditional medicine, especially Macrobiotics.

I thought that the comments on epilepsy were quite irresponsible, but a few pages on, and I’ve found something equally questionable:

Many pet owners who are interested in holistic medicine or who are concerned about using drugs and chemicals on their pets are reluctant to have their pets vaccinated. In theory if a pet has the correct diet and lifestyle it will be naturally resistant to disease and therefore need not be vaccinated.

However, theories do not always work in practice. My policy is that a puppy/kitten should be vaccinated by conventional methods in the usual way. Distemper, parvovirus and leptospirosis are too dangerous to be treated lightly and I do not have sufficient confidence in Homeopathic vaccination.

You don’t have sufficient confidence in Homeopathic vaccination? Why would anyone have any confidence in homeopathic vaccination, let alone someone who is medically trained?

The guide finishes with an overview of a holistic lifestyle, which includes many more typical alternative medicine ideas and phrases, including lots of mentions of “Western Medicine”, and the suggestion that our society is “fragmented and ill-at-ease”, because we have “replaced the problem of infectious disease with that of degenerative disease”. We are also treated to an overview of Macrobiotics and the Seven Levels of Judgement that it is concerned with. Both sections are too long to include here, so I suggest that you consult the guide to read them.

When it comes right down to it, pets are an easy target for alternative medicine. Adults who choose alternative medicine for themselves may have been taken in by the advertising and false mysticism associated with it, but they have made that choice for themselves. Adults who choose alternative medicine on behalf of those less able to decide (young children, pets, etc.) muddy the waters, as the recipient of the treatment must naturally assume that their primary care-givers mean only the best, and that the treatment will work as promised. In this scenario, pets bring an additional complication – they can’t tell you that it isn’t working, that they are sick or in pain, or that they would rather you medicated their epilepsy than starved them for it.

 

Update:

Since posting my blog, Burns have responded by pointing out that I’m obviously skeptical of alternative medicine. They also have let us know that they can’t share their miraculous healing stories with us for “legal reasons”…

(Sadly, this image was stored on the Twentyfirst Floor server, and as such, is not accessible any more. I’m trying to find a local copy that I can replace it with, as the post also seems to have disappeared from the Facebook page in question)

Categories
Current Affairs Religion

Tiny steps

It’s Tuesday, and the internet is still offended. Why? Because a store owner in Missouri posted an ill-advised sign in his window, which was spotted and widely circulated on the internet. It read:

Skepticon is NOT welcomed to my Christian Business

The owner of the Gelato Mio store saw something at Skepticon that upset him, which prompted him to put up this sign in his store window. You can read more about this on Hemant Mehta’s blog, which details the incident, and the response to the posting of the sign once pictures of it were circulated on the internet. Mehta’s blog is also the place to go to see a further apology from the owner of the store, which is as follows:

To the World:

Hello, my name is Andy and I’m the owner of Gelato Mio, a gelato shop located in Springfield, Missouri. There has been quite a lot of buzz and discussion concerning a picture of the sign I briefly posted in my front window Saturday evening. I’d like to take this opportunity to tell my story and offer a heartfelt apology to your community. I messed up, plain and simple. This is NOT an excuse, but how it happened from my perspective.

I decided to welcome the convention downtown by offering the attendees 10% off their purchases at my store. A lot of the group from the convention were stopping by, being very polite and enjoying my Gelato. Saturday night started out as a great night. Once the store slowed down, I decided to walk down the street to learn more about the convention, fully thinking it was something involving UFOs (“skeptics”). What I saw instead was a man conducting a mock sermon, reading the bible and cursing it. Instead of saying “Amen”, the phrase was “god damn”. Being a Christian, and expecting flying saucers, I was not only totally surprised but totally offended. I took it very personally and quickly decided in the heat of the moment that I had to take matters into my own hands and let people know how I felt at that moment in time.

So, I went quickly back to my business, grabbed the first piece of paper I could find, wrote the note and taped it in my front window. This was an impulsive response, which I fully acknowledge was completely wrong and unacceptable. The sign was posted for about 10 minutes or so before I calmed down, came to my senses, and took it down. For what it’s worth, nobody was turned away. I strongly believe that everybody is entitled to their beliefs. I’m not apologizing for my beliefs, but rather for my inexcusable actions. I was wrong.

Guys, I really don’t know what else I can do to express my apologies. I’ve received dozens of calls and hundreds of emails since the incident, and have done my best to reply to each and every one and express my regret for what happened. For the thousands of you whom I’ve offended, I sincerely apologize. I hope you can find it in your hearts to forgive me. This is me as a human being sincerely apologizing for my actions.

To those of you who accept my apology, Thank You; it means a lot. To those of you who haven’t, I hope you will. I’m just a 28 year old small business owner who made a big mistake. I hope you see that I have not made any excuses, I’ve owned up to what I did, and I apologize.

For what it’s worth, an Atheist reached out to me to help me work through all of this and contact your community directly. I graciously accepted his offer.

I will give everyone who comes to my store this week 10% off as a token of my apology. Really, what’s more universal than ice cream?

Sincerely, Andy

So, Andy acted impulsively, realised the mistake he made, and apologised. End of story, right? Sadly, no, because there are still people out there who would rather make an example of Andy than accept the apology and move on. PZ Myers disagrees, and his objections are now posted as part of Mehta’s blog (and you can see a selection of tweets here). The comments for Mehta’s blog contain a disappointing amount of hate, hurt, and irrationality, and readers seem fairly split about whether or not the apology is to be accepted or not. I’m afraid that I’m going to have to come down on the “accept the apology” side of things, and risk the ire that this will, doubtlessly, bring.

I tend to subscribe to the “don’t be a dick” philosophy, because being a dick doesn’t help get the point across, and mostly just tends to upset and alienate people. For anyone who would like to respond by telling me that they are a discriminated against minority who face abuse every day, and therefore have the right to be a dick, I will pre-emptively counter by reminding you that I live in a country which has, enshrined in it’s employment equality law, the right of a religious, medical, or educational organisation to discriminate on the grounds of religion, and where the vast majority of schools fall under religious patronage, meaning that it is almost impossible to educate one’s children without faith. With that said, please do me the courtesy of not dismissing what I say because I “don’t understand” the discrimination people face.

I think that Andy, like all of us, is human, and that he responded stupidly to something that was designed to provoke a response. He is by no means the only person guilty of such a crime, and I would wager that, if we were to check our own blogs, emails, and Twitter feeds, we’d probably find messages that we regret posting, or that we think now, with hindsight, were posted too hastily. Many people who believe strongly in religion do not merely see religious criticism as criticism of the religion, but as a very personal attack too – I could talk here about the various regions of the brain thought to be associated with religious thought, and the psychosocio-development of religion, but it’s probably more succinct to say that religion and faith are very personal and important things to those who believe, and those who believe tend to identify that belief as a large part of themselves as a person. In short, Andy, as a believer, has an emotional attachment to his faith, and when he saw something that ridiculed that faith, it also felt like something which ridiculed him directly, and his feelings were hurt. He acted, like many of us with hurt feelings do – by lashing out.

Am I aware that it’s irrational? Yes. Am I aware that it is illegal? Yes. Do we all sometimes do irrational, and possibly even illegal, things when we are feeling hurt and upset? If we’re honest, yes. Do we all apologise, publicly, for our irrational behaviour once the fog of upset has cleared? Well, no, actually. Mostly, we don’t. We shroud ourselves in a cloak of indignation, rights, beliefs, and other such emotional things, and declare that we were right anyway, or that it’s a matter of opinion, or other such placations. We use the cloak of indignation to bat away anything that might damage or tear the cloak, lest it expose the flawed logic beneath it. Privately, we might admit that we were hasty, but publicly, we do not want to lose face, so we gather our indignicloak about us and continue on. Does that sound like the kind of behaviour that skeptics revere, or more like the kind of thing that we are renowned for ridiculing? It is, I think, much easier to maintain an air of indignant offense than it is to accept that trashing a menu online  or posting hundreds of fake bad reviews was also an emotional reaction that, in hindsight, may be unjustified.

I’m not saying that what Andy did was ok – demonstrably, it wasn’t; it was offensive, and illegal. What I am saying is that he seems to have realised that his behaviour was offensive and illegal, and taken steps to remedy it. Frankly, he could have simply left the sign there, turned away patrons, and picketed the con for the rest of the weekend, and depending on the area he was in, he may well have received popular support for such actions. The fact is that that’s not what he has done. He took down the sign once his initial upset had cleared. He apologised, and has done so again, explaining (but not making excuses for) his behaviour.

People like Andy don’t understand our beliefs (or lack thereof) simply because we browbeat them into submission. People like Andy may never understand how or why we don’t believe in Jesus or Mohammed or any other deity. It would be nice if, in the future, everyone understood everyone’s beliefs, but if we are honest with ourselves, we might realise that, while we know about the beliefs of Christians, for example, we don’t understand them. I can think of many reasons why someone might have faith, but I don’t understand them because, to me, they seem illogical or hollow or simply weak. I speak the language of science, and evidence, and proof, and they speak the language of belief and faith.

I’m not saying that atheists should lie prone on the ground and allow people to walk all over them, but what I am saying is that responding like an aggrieved extremist group does not do anyone any favours. Do you honestly think that, if his shop goes out of business, he’ll suddenly have a conversion experience, become an atheist, and start attending Skepticon himself? Do you think that a non-acceptance of, what really appears to be, a sincere apology makes you seem like the better person? Do you believe that making a loud example of this person will help anyone, in any way? I don’t. Tiny steps matter.