Burzynski II

Sorry for the unimaginative title, but I get the feeling number 2 won’t be the last and at least this makes it easily searchable.

In this post, I want to talk about people’s online behaviour regarding this issue, think about it a bit and hopefully get others to do the same. It’s not a sciencey one (lots of links at the end for that, though), but I hope people will read it nonetheless.

I would say that the general acceptance of alternative medicine by the general public (and indeed the NHS, having walked past the ‘Hospital for Integrated Medicine’, formerly the Royal London Homeopathic Hospital, again the other day) creates a dangerous accepting background for these kinds of situations and media coverage of them (the BBC as well), and is a huge contributing factor in people’s choices. So that’s where raising awareness of the dangers and lack of evidence behind alt med as a whole comes in.

With the recent publication of an ‘apology’ from the Observer – actually it’s not an apology, it’s a hamfisted justification for their worryingly positive portrayal of the Burzynski clinic in the previous article that drew all the attention in the first place – it is unfortunately time to step back and really think about what’s going on here. Andy wrote an excellent post in reply the same day over at Quackometer and Josephine Jones is collating responses here.

Today Keir Liddle has also written a good post at the 21st floor starting to address the question of how the anti-Burzynski crowd (let’s call it that, to avoid ambiguity and meaningless labels) is coming across. In addition, upon hearing about people tweeting directly at patients enrolled at the clinic, Hayley Stevens posted her thoughts.

The issue

I am very concerned about this. A very small number of people are thinking it sensible/acceptable/useful to send tweets to people, one account in particular which I won’t link to here, who are paying for Burzynski to treat them. Let’s call them patients.

Let us set the scene.

These people are very ill. They have cancer; most of us have experienced family members and/or friends dealing with various types of cancer (it’s important to remember it’s not just one thing, just as virus isn’t – measles is a specific disease, as is pancreatic cancer, but cancer alone is an umbrella term) and do try to bear in mind how big an emotional toll that takes.

Generally if they have made the decision to spend their life savings and more on a last-ditch attempt to find a cure, you can be sure they have been giving a certain amount of time to live. They know they are dying and, while we all are, when your mortality is thrown in your face by something like a diagnosis of terminal cancer, your perspective is likely to change.

Also, having made said decision to spend thousands on a certain strategy attempting to prolong your life, some strangers shouting at you is unlikely (to say the very least) to change your mind.

The effects

Next, let’s think about what Twitter is. For those of us that use it, this really shouldn’t be difficult to get our heads around, however I’m finding that it actually can be.

Twitter is a bit like your text inbox, or ceefax if you really aren’t an internet person (though in that case you’re unlikely to end up here… anyway). It’s a stream of events coming to you from out in the ether, you read it when you feel like it, unless you have alerts set up as well (like a text notification noise and/or vibration), in which case you’re more aware of each time you get a message through.

Imagine you are one of these patients and your twitter feed starts lighting up with messages from concerned skeptics. They’re telling you that the man you’re giving all your money to is a fraud, a liar and a quack. They’re telling you you’ve been conned, duped, you’re wasting your money and your time.

Now, one reasonably polite message from you, you think, surely won’t come across badly?

I’m just concerned. Surely it’s better they know the truth?

Normally, yes, I prefer the truth over a dangerous lie any day. But again, these are very vulnerable people who have already made a commitment. What possible benefit do you think your attempt to enlighten them will bring?

Imagine your twitter feed/inbox filling up with messages from people you don’t even know, have never met and will never meet, telling you these things – insinuating that you’ve made a horrible decision so close to the end of your life (for yourself or family members). One message from you, one message from someone else… how many hundreds of people are following? If they all decide to raise their concerns, do you think this is positive?

Think about it

Here’s my problem.

I do believe the vast majority of skeptical types and everyone who is following and contributing to this story are good people, people who are concerned for their fellow human beings, who don’t like to see an unscrupulous, ethically blind man take advantage of the sick and dying. I like to think most people I engage with in any case are that kind of person.

But if you think it’s ok to force your voice into the world of the people mentioned above, in this context, then I am concerned. I am concerned that you are being selfish.

Why? Because, as I said, telling people whose minds are made up about all this evidence for Burzynski being a conman is going to make no difference to them, except make them feel horrible, and they don’t need any more of that.

Aren’t you just going directly to them because you want to absolve yourself? You have information, important information, that you feel everyone should know about. Informed decisions are the best kind. People are ill, you don’t want them to do the wrong thing – that’s understandable. But it’s too late. As much as you want them to listen to you and change their minds, that won’t happen, so don’t approach them in the first place, please.

Harsh truth

You want people to accept an awful reality, but I’m afraid you must do the same. We cannot help everyone. The patients are not the target here – nor are the generous fundraisers who have already made commitments to give their time and money (even if we feel it is misdirected, again, you cannot ask people to go back on their well-meaning promises) – because no amount of data and facts will convince them that what they’ve committed to isn’t right. They have access to all of the things coming to light, which they can read if they wish. Directing your otherwise well-intentioned concerns at them will not help.

We have to accept that however much we would like everyone to suddenly see the light and embrace the truths that have been unearthed, that’s not going to happen.

This information must be shared so that fewer people in future, when faced with such a terrible situation, will go down this path. What we don’t need is people coming across as insensitive and rude with no concern for people’s situations – because then things like that nasty Observer editorial will happen, and as a minor point – the reputation of the ‘skeptical community’, whatever that is, is tarnished. That can really have a negative impact on whatever good we can glean from these kinds of occurrences now and in the future.

It’s similar to politics; it’s the fence-sitters and undecideds, not the safe seats, on which attention needs to be focussed, if you actually want to make a difference.

Philosophies and ethics

Today a friend shared this excellent article about how doctors tend to deal with death. They don’t fight for every last second they can muster, they realise what can and can’t be done, what’s inevitable and what’s important. Quality of life over quantity, in the case of many terminal illnesses.

A friend of mine who is a doctor recently told me of a patient who had had very serious strokes and was not going to recover. She had got to know her and the family well, and they were arranging for her to go home to spend her last few days with her loved ones. However, a senior doctor who was rarely on the ward decided to come in and instead override that decision, recommending her instead for rehabilitation – keeping her in the hospital, trying to get her to restart, essentially. She died in hospital, without her family, and my friend was, understandably, incredibly angry. There are serious questions about prolonging life, which are beyond the scope of this post, however.

A major finding that Sense About Science has is that people who spend their last months chasing hopes around the globe, spending their money and time exhausting themselves – when it’s all over and done with, loved ones will wish they had just spent time together, enjoying what life they had left.

That is the real crime; that people like Burzynski and all the other quacks we will continue to attempt to expose are exploiting people’s desire for life to continue, and in doing so, they rob them of it.

I haven’t written about it before, but when a good friend of mine died of an incurable form of brain cancer, in addition to the loss, pain and anger, I was also relieved. Relieved that her family was so strong and dealt with it so well – she spent her last time in a hospice, with wonderful care (the amount of respect I have for end-of-life carers cannot be expressed in words), with family around. We, her old friends, were also allowed to visit her, for which I am very grateful.

Unfortunately, children cannot generally make sense of such a situation and cannot make their own decisions; their parents will make them instead. The act of dragging a child across oceans for invasive medical procedures that cause them pain and impede their ability to enjoy the life they have is seriously questionable in ethical terms. Again a bigger issue, but something else that should be considered if you are thinking about engaging families of patients directly.

Do you want to accuse people of causing their children pain? Again, the hope is to prevent people from taking such decisions in future, but addressing those who cannot be swayed is simply pointless and brings no benefits.

Don’t be a Dick

We’ve said it before and we’ll say it again.

I think the number of people who would send such messages because they are just dickish, want to spread their correct opinion around and care not for the feelings of others is very small.

The rest of the people, I expect, are well-meaning but are directing their concerns the wrong way. Your anxiety for their situation is not the point, your desperation to tell everyone you find who is doing something you consider stupid or wrong – in this case, you must keep it to yourself.

There are factors that make this particular case distinct from, say, homeopaths trying to treat illnesses for which effective medical treatments are available. It’s different from people who want to take their baby to the chiropractor. If you can’t see why, read slower, think more – leave a comment? I’m finding that some people get it, some don’t. If you don’t, at least refrain from saying things before you’ve asked a few people.

This is important – for this case and how it could turn out, for the people involved (also, who must remain anonymous wherever possible, for the above reasons), for the skeptics.

Links

Here are a few links, stuff that’s been happening in the #Burzynski tag, for those who aren’t following.

Science-Based Medicine addresses the fact that Burzynski is often using cocktails of chemotherapeutic drugs on his patients. Drug combinations that are not approved for the types of cancer in question. Drugs that some patients are unaware they’re signing up for. Drugs people are specifically hoping to avoid in many cases. Sadly this is common with a lot of alt med; especially TCM. Actual drugs are often included, at unknown levels and from unverifiable sources, making the treatment even more dangerous than if it were just harmless.

An important analysis of what’s really going on with Burzynski’s claims of approved treatments, publications and specific types of cancer patients they recruit, from the Ministry of Truth.

The clinic issued a Press Release suggesting their ‘representative’ Mr Stephens had been fired*, but we bloggers would still be pursued for libel. *Though he is still listed on the Patient Group website as the “Marketing & Sponsorship” contact  (noted by @writerjames ).

Some hard reading showed the list of publications in said press release to be, bluntly, crap.

Martin Robbins has also been in touch with the clinic about Stephens and received a response.

Even the BMJ have picked up on the story now.

Skeptical Humanities is researching patient outcomes. Sadly they are overwhelmingly worst-case-scenario, with only a handful of survivors.

Saul Green had researched in the past Burzynski’s claim of having a PhD, which seems to be false.

Josephine Jones is still updating the Burzynski-topic post Master List

On charging to enrol people in his trials. Interestingly, if one wishes to donate donate to clinic, one writes cheques to him personally!l

The clinic on Facebook – where the wall was shut down and many people came out with ‘this isn’t a place for negative comments’ type comments. Worrying.

The cancer act is rarely enforced – but it is illegal to claim you can cure cancer when in fact you cannot. @jon_S captures such a claim.

Some of the costs of a course of treatment at the clinic are described here by some people who went there.

Interacting on the Interweb

The latest furore surrounding the ‘potentially damaging’ nature of things like Facebook and Twitter is in swing, with the Daily Mail (safe to click! Minus images) interpreting a scientist’s views as social networking turning your kids’ brains to mush. Note that Martin does of course disagree – as do I.

Sciencepunk has taken the time to speak to Susan Greenfield herself to try to get a clearer idea of exactly what her concerns and suggested solutions might be, under all the media distortion and so on. He’s written up the interview for New Scientist. I take up her invitation to join the debate.

Unfortunately, listening to her speak I still find myself vehemently disagreeing with most of what she says for various reasons, including the fact that she clearly has very little or no personal experience of what she talks about, is missing some key issues and appears to wilfully ignore positive outcomes in favour of potentially negative ones.

That’s not very scientific!

So, let’s get ranty.

Context is everything

First I recall a comedy sketch (apologies for forgetting whose, do say if you know!) based on the occasions when Facebook is suddenly down/unavailable, in which the bereft individual wanders the streets shoving photographs in people’s faces and shouting “DO YOU LIKE THIS??”.

I laughed, because it’s absurd, we don’t do that… but hang on! We kind of do. I quite often show people pictures I’ve taken, be it on my camera, my phone, downloaded to my computer or even (omg old!) albums with pictures on actual photo paper!

Important to remember is that we behave differently in some situations compared to others; it’s a ridiculous fear that online behaviour is going to replace offline behaviour. They’re different things that don’t translate. Just as you don’t put your feet up on the table in a meeting vs. in the lounge, or take your shirt off and sit on your friend’s shoulders at a posh indoor concert at a swanky theatre.

We like to share our experiences with our friends, and sometimes if we’re a bit more serious about photography, get people’s input on our creative endeavours. That’s not a fault, it’s perfectly normal behaviour and taking feedback/constructive criticism/praise onboard is a good way to improve ourselves if that’s the goal.

Small-talk, seeking approval and helpful suggestions, presenting an image of ourselves – this is what we do in life, not just online. Does she also have a problem with in-person small-talk? Should we only ever be having super-meaningful conversations?

Sorry, but after our lab meeting we like to go and have lunch, talk about the weather, take the piss out of each other and show holiday photos, for example. We don’t spend all day talking about work or the latest world crisis; that would be draining and rather unhealthy, I’m sure most would agree.

In the same way, not all of my tweets or facebook status updates are serious. I share articles, I have a moan about things, we’ll have some discussions. But other times I’ll be swearing about a minor injury, taking a photo of the mouthwatering foods/lovely scenery I see before me or friends/pets making tits of themselves. Because life is a mixture of these things and if it weren’t, it’d be bloody boring.

Greenfield seems to want to make a connection between things like increasing autism rate and internet use. I’m pretty sure it’s well-accepted that the ‘increase’ in rates of conditions like this is due to better diagnosis and a clearer definition of what the condition actually is – these are recent things. There’s no good evidence (that I know of) to suggest the perceived increase is due to vaccines or playing on computers or anything else (edit: Jon Brock says it is indeed demonstrably false); it’s likely always been there, we’re just picking up on it better now. Which is good, because it means more people get the help and support that they need.

Also there’s been a ‘shocking rise in things like happy-slapping’?? Well of course there has, because again this term applies to a phenomenon that’s only been able to exist since mobile phones got video cameras. That does not mean that people didn’t go around beating other people up for fun and to show off to their friends before this era. Sadly I know this from personal experience as I’m sure many do, but good for her if she’s never had to deal with such things.

I do not believe for a second that these kind of people only exist because the internets have created them, by eroding their empathy circuits. There have always been nasty ****s and there always will be, sadly. Don’t blame the internet, or video games, or whatever the latest demon-you-don’t-get is.

When pressed for evidence, instead of offering some, she instead asks if we want to wait and see what kind of evidence emerges? *Ominous sound effect* – That is not an answer, it’s just silly scaremongering. She’s even placing weight in parental concerns, on anecdotes.

Parents will always be concerned about what their kids are up to, it’s the generation gap – every generation is both very different from (in terms of technology in particular) and the same as (regarding concerns, ‘we never did such things!’ ‘you whipper-snappers without any respect’! etc.) the previous ones. Again this is nothing new. To me it just sounds like she’s scared of change and using popular fears as an excuse to criticise.

It’s not so much the technologies in and of themselves that I’m criticising but how they’re used

Nail on the head. If your kid is spending 6 hours straight in front of the TV, damn well turn it off. Go for a walk. You can’t blame Nintendo for the people who spend their lives with the console running, you can’t blame Google for someone staying up until 5am looking at random websites. Discipline your kids and yourself and these things are like any other activity – perfectly healthy in reasonable amounts. Also if my child wanted to hug people for 6 hours, I’d be concerned at the level of clinginess they’d somehow developed.

Hi Ho Silver Lining

What gets me in a real rage about these attacks on social media, the internets and so forth, is that people (especially people who don’t even use it themselves, infuriatingly) are so very quick to not even bother considering the positive outcomes.

I’ve made similar points in the past but I’ll do so again ‘cos I can.

Some people aren’t comfortable in social situations. If you’re so concerned about the people on the austism spectrum, take a bit of time to learn what it is they struggle with, and what helps them. Even for those of us without personal experience of such things, sometimes we all have those days when we’d just rather not have to put on a smiley face and be around people.

For some, that’s more the default setting. That’s not because interaction with other people is completely off-putting, but sometimes the trappings that come with getting together ‘irl’ are just too much. If people are put off by the poking, liking and kind of sharing that happens on FB/Twitter then take a step back and look at what we do offline.

How should I dress? What should I say? What is the tone of my voice conveying? Is this rude? Will I upset them if I say that? What should I do in this situation? Do I have to smile now? Is eye contact creepy? No, if I look away, that’s impolite. Wait, I’m staring. Oh she thinks I’m a complete weirdo. I need to buy the next round? What are they laughing at?

Et cetera. You might not have ever thought these things, but many do, and social interaction can be a stressful experience – think of a time you just wanted to go home to the TV/a book/bed.

But most of us want to talk with people and share bits of our lives. If the above is a regular issue then the internet is an absolute godsend. Again I’m not going to waffle on about my personal reasons for thinking this but would encourage those who are scared of online things ‘replacing real life interaction’ to just stop and reconsider. Maybe, just maybe, the internet is actually a very fulfilling and stimulating environment that does give people a sense of identity and belonging in plenty of cases.

Of course, writing this on a blog isn’t the best way of conveying such a message, I know. So don’t whine at me about that!!

The wealth of information online, both factual things to learn and giving better access to ‘real life’ events and so on, it’s a huge resource that helps people immensely. Liaise with friends, make new ones, find a place to stay at short notice… the list is extensive.

People seem so hell-bent on discovering how damaging the interwebnets are for our brains, they don’t seem to be bothered about the good it’s doing. This happens with every technological leap, like television as she mentions herself; will it replace books?! No, of course not.

If you think Twitter is all people saying what they had for breakfast, I don’t want to talk to you about it. Either give it a try or listen to the people who explain it really isn’t, at least try to get a better idea, or shut up. Don’t knock it if you haven’t tried it, as they say.

If you only update your facebook page to broadcast your personal life then don’t complain it’s all about gossip and invasion of privacy. These experiences are user-driven, they are what we make them, and if I see more of this pointless demonising, I will shout louder.

My friends, whom I cannot refer to as ‘online’ or ‘offline’ because they are largely both (except when there are huge oceans in the way), have kept me afloat when I’ve been too upset to talk on the phone, too much of a mess to leave the house or present myself to people face-to-face.

Thank FSM for the internet because without it… well, imagine! Where would I get to see parrots dancing to horrible pop songs hilariously or cats in all manner of sickeningly cute predicaments. Or indeed hear first-hand accounts from countries descending into civil war, or kids getting beaten by police at legal protests.

Life is not simple, nor is our virtual world. Embrace it/keep your distance, whatever. But don’t be so quick to demonise what you have not even tried to understand or see good within.

That’s the remit of rags like the one that published the silly, distorted story in the first place.

—

I’m not going to go into the video games criticism much; saying that actions don’t have consequences and this could affect how people think is just another I’ve-never-played-them sourced view, in my opinion, and I’ve had rants about all that before as well.

Edit: more people are irritated!

Dorothy Bishop has written an open letter to Greenfield regarding her comments. Edit (2): having received much support and thanks for her letter, one academic chooses to challenge her position. If you want to see how scientists fight, take a look.

Martin has a more serious piece addressing Greenfield’s somewhat shaky claim that she has never linked autism to internet use, following more high-profile individuals losing their rag with her, including Carl Zimmer – documenting the rise of the most amusing #greenfieldism hashtag.

It’s even made it to the Wall Street Journal!

Breaking!! Susan Greenfield causes autism!

16/8/11: More recently, Andrew Maynard (my fellow I’m a Scientist! 2010 contestant) has published an excellent analysis of Greenfield’s latest outing, which came in the form of a video statement published on the Guardian website.

Antisocial media

So today I’ve been reading a bit more about:

How social media is destroying our brains!

One of my favourite comics noted a particular divide in society long ago (back in ‘97!); people who love technology and people who… don’t.

Technofear

Highlighted in the Guardian and the Telegraph this week, this is a story that comes up quite a lot lately.

Turkle’s thesis is simple: technology is threatening to dominate our lives and make us less human

Oh, see how teh technomologies are ruining us as a species!! (They write on their laptops, seeing through their glasses, whilst recovering from operations last week or popping an aspirin for that headache).

Give us a break.

The different kinds of communication that people are using have become something that scares people

What, it scares some people, therefore it’s evil? What is this, the dark ages? It’s a shame we’ve not come far enough to realise that fear generally just leads to prejudice and is not a sensible reason to shun technology.

It’s no new phenomenon, of course. The population has always suffered from technofear and not always from the least informed members of society. For example, even a fictional* Socrates got his toga in a twist over the arrival of books if we’re to trust his student, Plato (from Dialogues of Plato, Phaedrus, p. 275):

this discovery of yours will create forgetfulness in the learners’ souls, because they will not use their memories…

Yet, amazingly, even with the ubiquitous written word, we still manage to retain a fair bit of info in our minds. Indeed, people learn tremendous amounts from articles in their many forms. It may not be everyone’s favourite medium – audiobooks, TV, seminars and so on are going strong because not everyone learns/enjoys things in the same ways. But we’d all agree books aren’t evil, I think (I guess it depends on the content!).

they will be hearers of many things and will have learned nothing; they will appear to be omniscient and will generally know nothing; they will be tiresome company, having the show of wisdom without the reality.

Yeah, I know a lot of people like that too, Socrates. Funnily enough, they tend to read less.

*This looks like an interesting book; here, on the myth that led to Socrates’ character as depicted by Plato in Phaedrus - a king who refuses the gift of writing from the god Thoth, for fear of causing forgetfulness, and the origins of the ‘mnemonic’!

On the subject of interesting books, Martin has just linked me to this post by Jonah Lehrer – a review of a book called The Shallows that came out last year, exploring how the internet might be affecting our brains. Lehrer also cites Phaedrus as an early ‘technological scare’ and muses on man’s relationship with technology – in reality and fiction – the nature of multitasking and impact of video games. A highly recommended post.

Virtual Reality

The main argument seems to be that by talking to each other through the internet, people are departing from reality and suffering as a result.

it is actually isolating us from real human interactions in a cyber-reality that is a poor imitation of the real world

I’m not sure what kind of world some of these people think they live in. Do they strike up a conversation with every stranger that walks past? Have they ever travelled the London Underground? Not talking to people you don’t know isn’t considered odd. So why is talking to people you do know, who don’t happen to be in your physical vicinity, so very upsetting?

Enter examples of sitting at the dinner table, at funerals, in restaurants whilst texting. Sorry, but if someone lacks manners, that’s probably one of many manifestations and it would be easy to shake a finger at some parents…

If you didn’t turn off the TV at dinner time or explain why answering your phone in the middle of a conversation isn’t acceptable; if you didn’t catch that rudeness early, then don’t be surprised if it continues and gets worse.

But it’s not exclusively young people – far from it! I’d say 95% of the phones going off in lectures/talks belong to the more senior members of the audience, for example. Perhaps another case of lack of understanding/acceptance of technology causing more of the problems than the technology itself.

I hate these things, I keep forgetting I even have it! I don’t know it’s mine that’s ringing most of the time - we’ve all heard that one!

Yes, most of us have had a collision with someone staring at their phone. But is it any better if they’re staring at a newspaper or a book? No. Especially if you’re in the middle of the road at the time (yes, man on Clerkenwell road reading the Metro, I’m thinking of you!!). These things have always happened, they always will; it’s people, not the technology. We can moan and then laugh about it but don’t blame the gadgets, it’s pointless!

Twitter and FB don’t connect people, they isolate them from reality, say a rising number of academics http://bit.ly/eyayqJ – define reality

Thanks to @colmmu for returning me to the original point of this section.

Technojoy

One of the things that irks me most about these objectors is that they so rarely seem to consider people who are incapable of that peculiar idea of  real social interaction, or at least find it difficult – due to living with an Autism Spectrum Disorder (ASD), for example.

I have many friends with varying degrees of Asperger’s or simply find it difficult/unpleasant to interact with people directly – that doesn’t mean they don’t like people at all or despise all forms of human contact, though.

I’ve said before that I used to prefer to be on my own, didn’t have many friends – but a busy chat room provided a comfortable environment to talk to people of a range of ages, living in different countries. Talking to people online completely rekindled my interest in humanity and social interaction as a whole.

Of course that will not be the case for everyone. But I begrudge attacks on all social media on the premise that it prevents socialising (clue’s in the name?!) and the cultivation of interpersonal skills.

I suppose the problem is getting the people who do benefit from social media in touch with those who shun it; when one group finds it hard to talk directly to people and the other will only ever do that, that’s quite a barrier.

It’s not just a benefit to autistic people, though. It’s still not a well-understood condition and, like technology itself, often feared by the ignorant. By providing such individuals with the means to talk to others and, for example, explain their reactions and feelings, other people can better understand them and learn how best to approach them as friends, which is mutually beneficial.

It can be daunting to try to talk to someone whose ideas of acceptable social actions differ from yours quite drastically – that works both ways. I know people online who are great fun to talk to because of their sense of humour and intellectual brilliance. I’m very grateful for the opportunity to get to know them because I sometimes do find it much harder to talk to them ‘in real life’.

Sadly, critics of social media don’t seem to grasp this and the many other benefits of platforms like Twitter and Facebook, which I have sung the praises of before and will continue to do so.

Times, they are a-changing; move with them or be left behind!

—-

Links:

Marc Cortez‘s take on the latest complaints.

The different kinds of communication that people are using have become something that scares people

Germ Warfare

Yesterday the lovely Mr Levey of my university’s press dept shared this link on Twitter:

Kettle handles dirtier than keyboards! Who’s for a nice cuppa? http://bit.ly/cHBOTg (mail) | http://bit.ly/b9IA9r (press assoc)

At first I begin to despair that my work (and general) tea times would no longer be as pleasant as they were.

Typical Detto(x/l) advert style; trouble in the toilet brush

Then I notice one’s a Daily Mail article, have a read of that and then the press release and decide it’s just the latest in the crusade against the eeeevil microbes.

“Germs”

I hate this word.

It’s in all the adverts. They’re illustrated with little green monsters that have no basis in reality I can fathom, except those weird little rubber gremlin finger puppets I remember from childhood, like mini boglins (does anyone remember boglins?!).

I bloody loved my boglin!

So these representations of microbes, the relevant ones mainly being bacteria (I assume, anyway), as evil little nasties going around with the intention of making your children sick and being generally filthy are just silly.

First, of course, single-celled organisms do not have brains and therefore are incapable of mischievous and/or malicious scheming.

Secondly, you’re covered in the things. We’re basically walking incubators; toasty, inviting niches all over the place. But don’t jump into a bath of bleach!! This has always been the case.

Bacteria have been around for a much longer time than any of the more complicated forms of life so whatever has sprung up in this world has had to live with them and we are certainly no exception.

We’re pretty well-suited to playing host to bugs, inside and out. Lots of them are quite useful (though the good/bad bacteria obsession of the yoghurt/milk drink industry is another topic altogether) and we’d be at a loose end without them.

Many just aren’t a problem. They don’t do anything for us but also won’t make us sick.

Then there are a few that are to be avoided where possible, but even if we do get sick, most of the time it’s not life-threatening (especially thanks to modern medicine!) and being ill is perfectly normal, especially when we’re growing up!

Practice Makes Perfect

Our immune systems need to develop. In order to build up a good range of circulating antibodies we need to be exposed to a range of antigens to trigger their manufacture. Antigens come on the surface of bacteria and viruses, for example.

In the case of some viruses, we deliberately put some antigens (but not the whole, active virus) into the blood to fool the immune system into thinking there’s an infection and generating the relevant antibodies, which then allow us to resist or effectively fight the real infection later on. That’s your vaccinations.

Anyway, point being, it’s quite an important part of healthy immune system development to come into contact with a range of bugs.

I won’t review the studies on how parents keeping their kids in a sanitised bubble has caused them to develop asthma and severe allergies to a whole host of normally harmless stuff. Others have.

I grew up with pets and scrambling in woods/muddy places (one of my favourite games was making little mud cities for toys and collected insects in the garden, much to mum’s dismay as she tries to make a nice rockery). I’m occasionally allergic to mosquito bites (because I get so many) but other than that not a lot. Oh and hayfever severity varies depending on where I’m living.

Still, personal anecdote doesn’t count for much; a family friend has apparently admitted that her obsessively clean house has probably contributed to her son’s multitude of allergies. Which is good I suppose, but a little late for him.

It’s a balancing act of course. Exposure to allergens does sensitise us to them and can cause allergies, so dust and animal fur, mold spores etc. can be harmful. Everything in moderation as the old adage goes.

Playing on Fear

The aforementioned Dettox and other brands really take advantage of parental fears over hygiene and preventing childhood illnesses by marketing lots of products with such outlandish claims as

KILLS 99.9% OF ALL BACTERIA INCLUDING E. COLI

The result of the hysteria over ‘germs’ can often be that people keep things too clean. The thing with bacteria, as anyone who’s had anything to do with hospital hygiene and/or evolution knows, is that when you wipe out a whole bunch of them, the ones that are left are generally the best at surviving.

You’ve just done them a massive favour. The competition is gone! Now they’ve got more resources and space for them to grow and as they grow, they get even better at it, then next time the cleaner comes around, maybe they won’t care at all.

The same can happen in the home.

Breathe Easy

It’s great to keep the kitchen clean; I generally do (but it’s a student flat so it gets pretty disgusting at times) and knowing how to properly prepare and store meat/fish is essential if you don’t want to give yourself and guests food poisoning. Also rinse out cloths/sponges and let them dry; moisture is what the bugs like and if you use a wet old cloth you’re just spreading them around.

But people have taken it too far, sterilising everything to excess. My mum and I discussed the other day after seeing yet another advert for things to make your baby’s high chair so clean they can eat off it; surely spraying all the cleaning products around can’t be good for kids either?

Seems Michael Gough had the same thought and his comment was published in New Scientist (in 2003!) though it seems people are more concerned about the house being sparkling and smelling weird (don’t get me started on air fresheners) than what their kids breathe in.

Dubious Gadget

Mother and I spotted this ozone thing whilst browsing in TK Maxx (on sale for around £10 if I recall) and I felt I had to document it.

Hello, what’s this we’ve found in TK Maxx? Let’s have a closer look…

A look at their website shows their endorsed by Ainsley Harriot (or at least, he sells stuff there and they link to him). Tsk.

Brought to us by Home-tek International Limited, Roe Head House, Far Common Road, Mirfield, West Yorkshire, WF14 0DQ – C.E.O. Jamie Lennox.

This little light-up mini-toilet-like dooda apparently generates ozone in a tub of water so that you can stick all sorts of stuff in it to magically ‘KILL‘ all kinds of microbes; bacteria, viruses and fungi.

I had a look in the instructions to see how they justified selling this or if they explain how it worked at all.

Sadly not. Have a look – it’s kind of hilarious. As far as I can see it just lights up and (going by the picture) makes bubbles; I’d be interested to see if it does actually ‘work’.

The most ridiculous claim is that it kills microbes because they have ‘ozone receptors’ on their outer membranes, which conveniently absorb ozone, leading to their destruction! Yes, ozone is toxic but not because of receptors; it’s a very powerful oxidant (being comprised of oxygen and all).

This PDF from a marine centre states

Most water treatments to condition but not sterilise water with ozone operate on contact times of 1 –2 minutes. Sterilisation with ozone may require contact times of up to 10 minutes and even 30 minutes for effective treatment of some viruses. Contact times can be reduced by applying higher concentrations of ozone to the process water.

Somewhat at odds with the product’s 15 second operation time and “only a few seconds are required” statement. However since they give no actual figures re: output, one cannot calculate supposed effectiveness.

It bothers me that if you google ‘ozone gas safety’, for example, the top sites that come up tend to be ozone machine-peddling companies saying it’s all fine.

Ozone is classified under COSHH (control of substances hazardous to health) regulations, which anyone with experience in biology/chemistry will be familiar with, yet no mention of possible dangers were in the instruction booklet, that I saw.

A glance at wiki (or common sense) does point out that it’s also toxic to people.

Due to the strongly oxidizing properties of ozone, ozone is a primary irritant, affecting especially the eyes and respiratory systems and can be hazardous at even low concentrations. The Canadian Center for Occupation Safety and Health reports that:

“Even very low concentrations of ozone can be harmful to the upper respiratory tract and the lungs. The severity of injury depends on both by the concentration of ozone and the duration of exposure. Severe and permanent lung injury or death could result from even a very short-term exposure to relatively low concentrations.”

This seems to contrast quite starkly with Biotek’s assessment:

Ozone is completely safe

because…

in over 100 years of use, there has been never been a fatal accident.

So it’s ok, everything’s completely safe unless someone’s died!!

This site seems to summarise the risks better. Lots of companies seem to offer equipment for air purification or disinfection services, while others (the more reputable-seeming ones, generally) warn against its use and cite risks of respiratory damage.

Anyway, it seems ozone is a widely-used substance in the world of woo. Might keep an eye on it.

Research Fraud for Dummies

Yesterday I attended Westminster Skeptics to hear Brian Deer, an investigative journalist for the Sunday Times, talk about the ordeal he has been through in exposing Andrew Wakefield – the man who sparked widespread parental hysteria over the MMR vaccine. It took 6 years of fighting to finally get the paper formally retracted.

I strongly urge everyone interested in this matter to read this. It’s Brian’s own summary of the case background, for anyone who isn’t already aware of it. I won’t repeat it all – get the words from Brian himself. Edit 2011: He’s also written about it in the BMJ.

I’ve got a few interspersed video clips – sorry for the dreariness (& strange noise of my camera), I didn’t increase the brightness much to keep the slides visible. My first foray into iMovie; ooh the fun I could have with that program!!

The Trouble with Andrew

Wakefield (I may refer to him as AW for convenience, that’s not an expression of sympathy for him though) qualified as a surgeon, not a clinician. He was never licensed to treat patients GP-style. On top of this, the Royal Free, where he examined the 12 children detailed in his 1998 Lancet study, does not have an autism unit of any kind so already this is suspect.

Astonishingly, he was funded to the tune of £435,643 (+ expenses) by the Legal Aid Fund – an access to justice service for cash-strapped individuals – the money for which comes from tax payers.

£150/hr!!

Fraud Cluedo

Deer runs through many (with hindsight, blindingly obvious) clues as to the true nature of Wakefield’s dodgy research.

There was zero evidence at the time for a vaccine-autism link; it was all an elaborate fishing exercise. As was later discovered, he’d been set on a path to find such a link for 2 years beforehand.

Predicting one’s conclusions with startling accuracy is always a bit of a giveaway in research. It just doesn’t usually work like that (believe me, I know!).

He took enteritis (small intestine inflammation) and disintegrative disorder (a serious condition on the autism spectrum disorder or ASD scale; actually moreso than autism itself) and concluded that they were

Undeniably indicative of a vaccine-induced disorder

At a press conference, when at the time AW was being paid £150/hr to be a principle expert with the purpose of raising lawsuits against big pharma companies, he HAD to say the product is unfit for marketing – if you say anything else, the lawsuit has to fail. His lawsuit cost £18m public money with another £45m on top paid by pharma.

He still denies any conflict of interest.

But what if it’s true?

Well, there’s always the chance that health scares are only media hoaxes, and there was certainly plenty of bad journalism around where this case is concerned.

If it were true (and as Ben Goldacre will always tell us, medicine makes mistakes – when we find out we’ve made one, especially one that’s killing people or seriously ruining their lives – we have to shout about it and fix it as quickly as possible) then it should be happening a lot.

This vaccine has been (and should continue to be) given to thousands upon thousands of children. It would be entirely responsible for the media to pick up on such a serious side-effect, should it exist.

Or, it’s simply a scam.

From July 1996 to February 1997, AW met a series of parents with very specific claims.

The neurosurgeon, in Ward B, with the defibrillator

Going back to the clues, some in particular got Brian’s alarm bells ringing after being assigned by the Sunday Times to investigate Wakefield’s claims.

• The case of the DTP (diptheria, tetanus, pertussis) vaccine

When this vaccine was investigated, a time limit of 14 days was given for onset of symptoms; if it was after that, it didn’t count as a result of the vaccine. When Brian noticed this, he thought

I am absolutely not getting involved in this

He saw the DTP paper and thought there must be people involved who knew of the case, specifically lawyers.

Two advantages to going about medical fraud are in the nature of medical research itself; it is published with a great degree of anonymity, where patient data are concerned.

Medical confidentiality and legal privilege gave a fantastic screen for AW’s work.

• The disparate locations of the children

Wakefield and his legal team solicited the patients he worked on. Brian has a collection of letters that ask for referrals from GPs to AW and that phone calls be made.

Deer points out that anyone who has dealt with hospitals (either working for or receiving treatment knows that consultants do not phone you.

• 8/12 parents originally blamed MMR. Why not all of them?

In fact, all 12 did. The last to come around to this point of view actually did so after a visit from a lawyer who explained some of the things they might have expected to see, should the vaccine be responsible for some change in their child.

2 in 3 sounds vaguely epidemiological. AW manipulated the data to show the 14-day time link, causing a drastic alteration in the mean and range of the onset data by removing outliers.

One parent even categorically stated

That is not true

when shown the paper and realising it was in fact their child that was referred to.

The “symptoms” that AW used to describe his disorder do not really qualify as such (see film); 3 of the children didn’t even have autism, only one of the 12 actually had regressive autism (in which the child appears to be developing normally then regresses at some point).

Wakefield misrepresented the times of onset extremely; for children 4, 8 and 11 it was in fact before they received the vaccine. For 2 it was months after it (Deer has personally interviewed her and seen submissions for litigation to confirm this).

Dodgy Pathology

11 and 12 were reported to have ‘bowel enterocolitis’; however on re-examining the samples, an independent pathologist with no knowledge of the case reported that most were

Endoscopically and histologically normal

Colitis requires some sort of injury; there should be neutrophil infiltration (a type of white blood immune cell) and this was not found to be significant in any of the samples.

Essentially, not one of the 12 children fits his bill (the details of the pathology are expanded on very well in this autism blog), yet he still denies everything.

Some of the many gems Wakefield comes out with in defence/as an excuse:

I just listened to the parents…. they will always tell you the truth… I’m a victim of dark forces! … There is no conflict of interest.

When any doctor anywhere know parents are rarely (though not never) on the money and the aforementioned ‘dark forces’ actually include our very own (Westminster Skeptics president!) Dr. Evan Harris.

In the end… they’re all greedy

Deer made good use of quotations from the film Casino (as above) in his talk. He closed with:

To be a charlatan, you have to be friendly, persuasive… have social skills… what distinguishes them is they’re greedy. They can’t resist going too far.

Jack of Kent called the conflict of interest intolerable and marvelled at the outcome of Wakefield’s attempted libel case:

He even upset David Eady!

Evan Harris addressed the room (which greeted him with thunderous applause, as an attempt to reassure him that despite losing his Oxford & West Abingdon seat to the tory first-timer Nicola Blackwood), first noting that Brian had showed us less than 10% of the material he has on Wakefield.

He also reminded us that Brian is a journalist, not a scientist/medical doctor, and has done a fantastic job of wading through the terminology (indeed, where seasoned scientists – Lancet editors included – had failed to do so).

The Lancet were given the opportunity of advance warning so that they could give their view of the situation. They didn’t do this and instead leaked the story; since Brian’s income as a journalist relies on publishing stories this was yet another blow to him personally.

Evan points out the strict restrictions in medicine regarding testing on children, due to their inability to consent, and the refusal to give parents the power to make decisions for them (though here my mind turned to MGM and why this is still permitted).

In this case, the medical establishment failed.

Questions

Did Wakefield set out to be deceptive and fraudulent to the level we now know him to be, or did it perhaps snowball accidentally?

He recalls that AW took a book out from the library, Field’s Virology, and applied what he learned from this in order to make the conclusion that measles causes Crohn’s disease. Anyone (and I have some friends) with this knows it’s not true; we don’t know what causes it and it can be incredibly serious. As has been said before, discovering the cause of something is no crime (far from it); as long as you actually have evidence to back up that claim.

This is why he wished to perform colonoscopies on the children (again anyone who has experienced this will probably not wish it on anyone, especially not kids), to see if he could find measles virus in the terminal ileum to support his hypothesis.

We are also reminded of Barry Marshall from Perth Hospital, who had the (then outrageous) idea that a pathogen caused stomach ulcers. We now know this to be true (Helicobacter pylori does indeed cause them) and Wakefield had extrapolated this result to measles in the bowel —> autistic enterocolitis.

I would say that Andrew Wakefield is a pathological liar… he was driven to this

Yet another colossal conflict of interest lies in his patent for a single measles vaccine. Brian references The Producers, in which a key point is the ability to make more money out of a ‘flop’ than a success; Biotech companies can make money from ‘mug punters’ who don’t know things will not work (and here, I think of homeopathy!). The vaccine was never going to work, but in discrediting MMR, Wakefield created a market for it anyway.

He planned a testing kit and a cure for the measles/autism/bowel disease collective syndrome he dreamt up. The medical school allowed this because they knew that AW was being paid by lawyers whilst carrying out his research and he was protected (here I think of the Pope!!).

David Colquhoun remarks that it was not the whole of the medical establishment covering his tracks; Mark Pepys got rid of him eventually.

He was offered one year’s paid absence to prove his results but he refused, including denying anyone access to the biopsies… He was not treated unfairly, as many claim.

His question settles on asking Brian if he could write up the story regarding the medical school as its conduct is still of major concern.

Brian agrees and tells us that Malcolm Grant approved a 48-hour denial clause and fought the investigation for 3 years. He also finds the recent BMJ editorial on the subject to be somewhat inadequate (though I won’t go into that as the principal of my university wrote it; perhaps another time… when I’ve finished my PhD perhaps?!).

They could not retract the paper straight away because

The medical school conducted an investigation and cleared it.

A cover-up certainly worthy of further exposure, after repeated dismissals of Deer’s hard work simply because he’s “not a doctor”.

With regard to the rest of the authors, who pulled their names from the paper when the scandal peaked, the 2nd author was also charged but not found guilty of dishonesty.

Twitter!

Someone received a Tweet, supposedly from “the best friend of the mother of the Californian child” (that’s number 11), saying that “the family was living in Fulham at the time”.

Brian is not impressed. He has clearly seen it all before; my best friend’s cousin’s boyfriend’s mate knows such-and-such… and what results is rarely, if ever, reliable.

He knows they were not living in Fulham at the time, having met the family twice in person (both here and in California). The father denies that any of the results are true.

Jack of Kent then reads another Tweet (from someone like @TrishDecien, perhaps) saying:

My view is that Wakefield was sincere, if misguided/sloppy. Believe me, the parents needed, & still do, explanations about autism

None of us disagree that we need explanations about autism. However, that is not the point. The man committed serious medical fraud, has played on the trust and fears of parents the world over. When someone mentions that now parents are doubting, however much we discredit AW and his ‘work’, the problem will not go away – Deer agrees

You can’t un-ring the bell

@Flayman makes another good point.

My wife was a research biologist. She read Wakefield’s paper and even though she felt it was “quite rubbish science”, there is the doubt – to ignore the conclusions might be negligent? How could you ever forgive yourself?

Sometimes no amount of intelligence can overcome the combination of parental paranoia, care and guilt.
Finally, Evan asks about Brian’s experience of hate mail.

Brian observes that he tends to see two forms of blame; for the vaccine, and for oneself. He considers guilt a kind of self-directed anger; some parents (dozens to scores, he says) blame him personally and have resorted to obsessive stalking.

I have myself had to delete many facebook acquaintances after arguments of varying lengths over their anti-vax stance. It is a faith position. Parents who want an explanation and are convinced there’s a pharmaceutical company conspiracy (my quote of the day to @facesake: Who is this big farmer and what’s his game anyway?) cannot be persuaded with facts, because their convictions aren’t based in evidence – it’s emotional.

Deer has saved many lives through discrediting Wakefield, though the likes of Jenny McCarthy (who has finally had to admit her son does not in fact have autism) and frightened parents continue to do their damage.