Expression Is Not Free

This weekend I journeyed to the centre in the freezing cold to join the Rally for Free Expression opposite the House of Lords. Here’s my flickr set, plus you can see One Law For All’s videos and photos as well (of course, in the one I’m in, I’m making a weird face). Pod Delusion have some excellent highlights in Episode 123.

It was toe-numbingly chilly, but worth it! The turnout was good and the speakers were exceptional.

What for?

Right, there have been some disturbing occurrences in some London universities lately, which I’ve yet to write about, but this is a good time to collate them and look at the (serious) problem at hand.

University College London

First we have UCL. The Atheist, Secularist & Humanist Society (ASHS) advertised for their latest pub-based meet-up, which happened to feature a frame from one of the Jesus and Mo comics – appropriately featuring Jesus and Mohammed having a pint together. Aww.

Following what seems to have been one complaint from an angry person to the UCL students’ Union, the UCLU for some reason decided it was appropriate to tell the ASHS to remove the image so that this person, and others, would not be offended.

This all went on for a while, the whole debacle involving resignation, criticism from many angles, demonstrations of support from other universities, cities and indeed countries. Fortunately it did result in the UCLU taking a step back, though the overarching expectation of censorship-to-protect-religious-sensibilities does seem to remain. It’s been a bit of a PR nightmare for UCL – and it is an important issue, well-summarised by Ministry of Truth – but things could have been worse.

Here’s Susan Zuang of the UCL ASHS speaking a bit about it at the rally:

London School of Economics

For example, as they have become at the LSE, which has effectively brought in its own form of blasphemy law following a tiny number of complaints (given the size of the LSE student body) against their ASH posting the same cartoon in solidarity with the UCL ASHS.

The situation here is far more concerning, yet seems to have escaped the media’s notice; a far more heavy-handed and outright defence of religious privilege by the LSE Student Union. I would urge any current and former students to look into this and make their feelings known.

This action by a university – a supposed forum for learning, discussion, philosophy, ideas and progress, is throwing out accusations of racism:

The LSE Students’ Union would like to reiterate that we strongly condemn and stand against any form of racism and discrimination on campus

A depiction of two historical figures sharing a pint is both racist and discriminatory? Even though subscription to a religion does not make one part of a particular race, nor is one’s participation in a society automatically indicative of discriminating against those who don’t? LSE, we are disappoint.

Edit: here’s an account of the correspondence between their ASH and the SU.

Queen Mary University of London

Closer to home for me, as a QM student myself, and an even more worrying incident.

Here are the QM ASHS representatives talking about the fear and intimidation caused when the planned lecture on Sharia Law and Human Rights was interrupted by a man threatening everyone whilst filming them on his phone:

The police were called and the lecture cancelled. Again, in a university, which should be a rich ground for debate about a huge range of topics. Fortunately, the principal has been pragmatic and reassuring.

Principal Simon Gaskell has spoken publically following reports of a disturbance at a recent meeting of the Atheism, Secularism and Humanism Society, and spoke to reassure students that Queen Mary takes your freedom of expression and safety seriously.

“The democratic right to freedom of expression and debate is one Queen Mary strongly upholds and promotes. Talks, meetings and debates are held peacefully at Queen Mary on a daily basis and we will continue to host such events.

“We are equally committed to our duty of care to students. A police investigation of Monday night’s incident is currently underway and Queen Mary will conduct its own review. We will do our utmost to ensure this occurrence is not repeated and that our students are able to gather and engage in debate freely without interference of any kind.”

A short time later the principal released a further statement to all students and staff of the university, which I have reproduced below for those who would like to read it. He reiterates many of the points made by those involved in the events summarised above, and by all of us who support the people involved.

Rhys on Facebook

Finally, our friendly neighbourhood teenage skeptic strikes again. He uploaded the Jesus and Mo cartoon as his Facebook profile photo, again simply to show support for the students in London and in disagreement with the Unions’ approach.

His school later saw fit to tell him to take it down, or face some kind of disciplinary action. Tell me when it became acceptable for schools to interfere in students’ lives outside the school gates, when the matter is nothing to do with the school whatsoever and harming no one?

Here’s Rhys at the rally:

Defend Free Expression

So regarding the rally itself – the turnout was pleasingly high despite the challenging temperature.

You can listen to all of the speeches here on the Pod Delusion – with a full list of the speakers. I would particularly recommend Nick Cohen, Jennifer Hardy (as seen above, a bit), Derek Lennard, Sue Cox, Kate Smurthwaite and Joan Smith, but of course all of it if you do have time. I’ve got some more video snippets: Dawkins, Derek Lennard, Maryam Namazie.

Kate relayed a very moving anecdote about one of her students (she has taught English to immigrant classes), an Iranian woman who always seemed very committed to her religion; ensuring she always had her headscarf if any men were present, excusing herself from class to pray at the proper times and in the correct direction.

The subject at the time was adverbs of frequency (woo, grammar!) and Kate used the example:

“I never go to church”

To which the Iranian woman responded,

“But aren’t your parents angry?“

“No, because they also never go to church.”

And her sincere reply was both enlightening and sad:

“So… you are free.”

Probably the most moving speaker was again Sue Cox of Survivors’ Voice, whom I have seen previously at both the Protest the Pope rally and March for Secular Europe. Sue is an incredibly brave and admirable woman who speaks out against the abuse she and countless others suffered at the hands of Catholic clergy.

She told of a survivors’ group consisting of deaf and speech-impaired individuals, who had all endured terrible ordeals as children, including one man who recalled being passed around a group of  more than 10 clergymen who treated him as “a piece of meat”.

Sue thanked all those who have supported her and the survivors’ groups, which has in part enabled them to take their protest to the Vatican itself, although it is not permitted to speak ill of the Pope himself or hold any kind of demonstration there. With the march followed by helicopters, that same man was told to put down his Ratzinger, Out! banner because it was offensive.

He put it down, picked up someone else’s placard and kept going.

Not that it needs saying, but you know what is offensive? Powerful religious institutions protecting serial child molesters while showing little to no regard for their victims (until they’re found out, and even then some still manage to give excuses and receive protection – like this from yesterday: a ‘victory’ for the Holy See as abuse victim withdraws lawsuit).

The Bottom Line

A wide range of topics were covered at the rally, from child abuse to libel reform, blaming of rape victims, corrupt politics, the nuances of comedy, and of course the censorship of students by the societies set up to support them.

The message was clear; that freedom of expression is vital to progress. Pick any paradigm shift you can think of – the Suffragettes, Martin Luther King, anything – had those people shied away from offending, we would not be where we are.

We cannot progress further if criticism and debate are stifled. The only speech that needs protecting is that which offends (and we’re not talking hate speech or incitement to violence; those are legislated against for obvious reasons – see the Holocaust or Rwanda genocides, as Nick Cohen rightly pointed out. And people need to stop pretending things fall under this umbrella when they don’t). The things that need changing are those that some people won’t want to have questioned.

Without the freedom and encouragement to ask all kinds of questions, express ideas and new ways of thinking, we cannot better ourselves or help those who cannot help themselves. We can’t oppose abuses of human rights and we can’t improve anything for anyone.

So please, lend your support to those who need it and make sure the message is clear, that we will defend free expression – since, sadly, it still appears to need it.

—

Science Wooseum Revisited

Time for an update on the Science and Art of Medicine – Living Medical Traditions exhibit in the Science Museum, London!

If you’re not familiar with the backstory, do check out these posts or listen to my report in the Pod Delusion live 2nd birthday episode – go, make some tea and a sandwich while it’s on or something

Briefly, we’ve been trying to improve the Science Museum’s alternative medicine exhibit as there were some serious problems with it. It largely came across as promoting alternative treatments, even advertising practitioners and generally being worryingly uncritical, with no reference to the results of reliable studies (i.e. that most of the ‘treatments’ are no better than placebo and many carry serious risks) – and indeed no mention of the wonderous placebo effect at all.

I’ve highlighted some of the original displays and issues in this photo gallery, now with some new photos – though a lot of them are appallingly blurry, apologies – in this new set.

Important statement

We are extremely glad that the Science Museum has chosen to listen to these complaints and do something about them. To take a second look at something (that people have worked hard on and are likely proud of) with an objective eye, receive criticisms, consider them and make some changes – that is admirable, it’s scientific and what we might expect from such a great institution.

I think in summary, some very important changes have been made, which is excellent. But more could (and should) be done as it’s still far from the resource it could be (I’ll come back to this at the end*).

Proposed Changes

Last year the museum proposed some changes, based on discussions with Simon Singh and the rest of us. They decided the main sections to focus on were homeopathy and acupuncture – while I agree these were the ‘main offenders’, the whole gallery exudes quite a credulous vibe, but I am completely accepting that a total overhaul would take a lot of time and money so let’s look at these two sections for now.

Homeopathy

From the correspondence:

As you know, we are already proposing to make some changes, on the advice of trustees, to make it quite clear that we are describing specifically the Indian context. In general, as far as I can see, you share the sense of what changes out to be made. You have nonetheless expressed two concerns that we should like to address. We will therefore follow your suggestion and add a parenthetical observation:

Homeopaths believe that ‘like cures like’. This means that homeopathic practitioners will give a remedy – often highly diluted (to the point that a bioscientist would say it contains no active substance at all) – that produces the same symptoms as the illness.

I presume the focus is on India because of the resources available for the exhibit. I’m not sure why otherwise, given that homeopathy was invented in Germany and is used worldwide, to varying degrees of disaster (I’m not exaggerating – keep an eye out for Martin Robbins’ experiences of homeopaths in Africa for more in that vein).

The other strange thing here, for me, is bioscientist. What does that mean? Also, chemists, physicists and mathematicians all agree that the very idea of homeopathy is ridiculous and scientifically meaningless.

The homeopathic travel kit was proposed to be removed entirely but as you can see only the caption has gone – so now people just don’t know what it is. I suppose it would be odd if it were just an empty space? Some text has been removed from the panel and now simply describes the image of a woman preparing her ‘homeopathic treatments’ at a ‘baby clinic’ – which makes me sad in itself.

They have also, as Alex suggested, changed their wording – all cases of doctor have now been replaced with practitioner. This is a good thing.

Acupuncture

From the correspondence:

You have also raised the issue of acupuncture. Taking on board all the advice we have been given we cannot agree with David Conquhoun‘s suggestion that the advice of NICE should simply be dismissed. NICE set the national standard estabilishing whether a “clinical treatment [or set of clnical procedures] is considered highly effective, cost effective and safe, as well as being viewed as a positive experience by patients.” Whilst there may be good reasons for overturning their conclusion about the efficacy of acupuncture this process has to be achieved by debate in the public arena, and that has not yet happened.

Obviously I, and no doubt David, would dispute this, but I’ll just leave that there and move on.

The old board:

New text:

Painkillers alone just weren’t helping Stephen’s knee pain caused be osteoarthritis, so his general practitioner [GP] recommended acupuncture. Here’s his story.

Stephen is a retired clinical psychologist, but still enjoys walking and travel. His knee pain was severely restricting his day-to-day activity and he was considering a joint replacement. But he was anxious to avoid surgery of that kind because of concerns about complications and the variable success of the procedure.

His doctor recommended acupuncture – this is offered by his NHS GP surgery and administered by biomedically trained medical and nurse acupuncturists.

Fine needles were inserted into acupuncture points around Stephen’s knee and areas of local tenderness and left in place for up to 15 minutes. Each treatment led to greater and more prolonged relief of Stephen’s symptoms.

After four weekly treatments at first, Stephen now comes to the acupuncture clinic every 6-8 weeks for a ‘top-up’ which keeps his symptoms under control. Aside from reducing pain and the need for painkillers, the acupuncture has allowed Stephen greater mobility, which itself is important in managing the symptoms of osteoarthritis. As a result Stephen thinks his quality of life has improved.

The last sentence no longer says ‘…his quality of life has improved enormously‘. Finally, a new caption underneath:

Acupuncture has been rigorously tested by medical researchers for a variety of ailments. These tests have shown that acupuncture can relieve pain and this is why it is available as a treatment on the NHS. The NHS summarised its current judgement in a review published in 2010 on the internet at:

www.nhs.uk/conditions/acupuncture/pages/evidence.aspx

So osteoarthritis of the knee is cited as a condition for which positive evidence exists. Rheumatoid arthritis, on the other hand, has been shown to be unaffected by acupuncture treatments. What’s important to note is the qualification on this page:

this evidence does not allow us to draw definite conclusions…More research is needed to investigate whether acupuncture works for these conditions.

So I’m still not sure the exhibit expresses the weakness of the current evidence – but at least there’s a link.

Most pictures have been removed, as have captions suggesting GPs endorsed the treatment as effective. For some reason the (presumably fictitious) patient’s name has been changed from Ian to Stephen and he’s now suffering from osteoarthritis in the knee instead of shoulder/neck pain, presumably due to a quick read of the above link.

Mention of Stephen being a retired clinical psychologist is interesting. To me this would suggest an attempt to legitimise his choice of acupuncture as he was involved in medicine himself. Appeal to authority?

While Jonathan Freedman (top right of the old panel) no longer appears in the upper part of the new display, sadly the advertising for the St Albans clinic below remains.

Introductory Panel

Finally, another change that was accepted to be important was the wording that greets visitors on the first explanatory panel. The new is on the left (bit small, sorry) and the old on the right.

Thankfully, the following statement was added:

Contemporary research shows that many of the practices are, from a scientific point of view, ineffective.

And an important clarification has been made:

even today 40% of the population of China use Traditional Chinese Medicine clinics as their first (and often only) choice for healthcare.

Whereas before it was simply an argumentum ad populum – that loads of people use it, ergo it must work/be acceptable (bottom of the right-hand photo).

Other changes made & suggested

Most importantly, the awful interactive video display has been removed completely.

What is disappointing is that some of the things I would consider to be quite dangerous are still there. For example, this description of the herbal product Masturin, about which I can find no actual research, but oft-repeated claims of this nature:

DESCRIPTION

Uterotonic, specific for female disorders. Prepared from herbal ingredients like Saraca indica, Withania somnifera, Abroma augusta, Berberis aristata, Rauwolfia serpentina and iron acting solely on female reproductive system.

INDICATIONS

• Uterine tonic
• very effective in P.I.D.
• Relieves pain in Dysmenorrhoea

A herbal uterine tonic it tones up the nerves and ensures pain free and regular periods. Made from herbs

It worries me that this product is on display along with the claim that Joshanda ‘treats colds and flu’ – it’s this kind of uncritical exposure I take issue with. I know the anthropologists want to claim it’s about looking at culture but I really think you can do that in a safer, more informative way.

Also I was disappointed to see no changes to ‘Professor’ Shi Zaixiang’s board, relating to the claim that he was diagnosing and treating Ménière‘s disease. Also the acupuncture model at the start has not been adjusted so that it no longer claims ‘point BL-60 can be used to treat headaches‘.

*I’m not saying that it should all be a total bloodbath (which is what many ‘skeptics’ might want) but it should reflect what the research has shown – more obviously and comprehensively. It should explore negative sides to these traditions (and more recent inventions) – for example, as my friend pointed out, the devastating impact of TCM on wildlife, making many species endangered and even extinct. Also, ideally (and for me most importantly), tieing in the placebo effect with modern medicine and how the discovery and development of the randomised controlled clinical trial has revolutionised healthcare.

The main thing that drives otherwise rational and caring people to submit themselves and others to quackery when they are vulnerable is ignorance – not of the wilful kind, but most people just don’t know how medicine works. Juxtaposition of alternative ineffective treatment modalities with confirmed effective medicine is the perfect teaching tool.

I’m not trying to be patronising. I am frequently upset by hearing of parents dragging terminally ill children around the globe chasing false hopes and subjecting them to invasive, pointless treatments that often cost them their life savings and cause the child a lot of pain when they could be doing fun things and enjoying what life they have with their loved ones.

What’s a shame is that available expertise hasn’t been utilised. I find this puzzling:

The suggestion that we consult Edzard Ernst is of course a valuable one. However there seems to be little disagreement about the facts (beyond the discussion in which we turn to NICE as an authority). Instead the issue which has been very helpfully brought out in these debates is whether the exhibit can be misconstrued.

I would say that consulting an expert in alternative medicine in constructing an exhibit about alternative medicine would be useful in tackling clarity and factual issues alike.

If anything can be done to make the general public more aware of what they can and can’t trust, medicine-wise, I’m for it. I think this gallery could play a part in that – but at the moment it isn’t. To be noted is that they are planning a ‘radical overhaul’ of medicine in the museum generally so more input from funders and visitors would no doubt be useful.

—

To finish, there’s this hilarious comment in the TCM section:

You don’t have to be ill to need treatment

Well that just sums up alt med perfectly, doesn’t it!! (Also, lifestyle is important in medicine and wellbeing full-stop. Any doctor worth his salt will tell you that, and we hear it all the time; medicine IS holistic. Why do people think otherwise?!)

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.

Burzynski

I think it’s time for me to say something on this subject. It is after all very closely related to my current… vocation (if one can call it that, being a PhD student still!) and impacting directly on some of my friends.

One of those friends is my co-host of our long-neglected podcast, Super Duper Woo-Fighting Duo (With Capes)! – Rhys Morgan.

Edit: even BoingBoing is on it this evening!

Background

Feel free to scroll down to ‘The Threats‘ and ‘Some Interesting Correspondence‘ sections if you know all this…

The subject is one Stanislaw Burzynski, based in Houston, Texas. He offers an experimental treatment (though to call it that is probably a bit generous) to cancer patients called “Antineoplaston Therapy”. These antineoplastons are claimed to be peptides (bits of protein – though they’re generally not, technically – see comment 11 for more) found in urine. When a difference between cancer patients’ and healthy individuals’ urine peptide profile was found, an assumption was made that cancer sufferers were lacking these protein chunks and therefore replacing them should be an effective cure. A list of his patents and publications can be found here. This NYT article is extensive and demonstrates the shocking wealth accumulated:

… the gross income of Dr. Burzynski and an institute he runs was $40 million from 1988 to 1994… he took home $1 million a year.

However, the theory itself is dodgy at best and years of tests have not convinced the worldwide medical community. Yet Burzynski continues to run his clinic, charging people tens of thousands of dollars with promises of efficacy and hopes of being cured – even if the patients have been given a few months or years by doctors elsewhere.

Edit: this is shocking – records show Burzynski threw random chemotherapy cocktails at people (those saying chemo kills; well, he certainly didn’t seem to do his research on it), failed to disclose pharmacy ownership conflict of interest, did not alter treatment despite scans showing no improvement... Texas Medical Board might finally be doing their job.

Also see here for his public record – makes for a disturbing read. Plus, they also have a range of ‘healthcare products’, unsurprisingly – glorious website full of scibabble nonsense words and indeed typos.

What’s happening?

Now, more and more people are starting to criticise this man and his practice and the tactics we have seen so many times before – legal threats, bullying, hoping to silence – are coming thick and fast. There is now a petition asking the clinic to release a concise, publicly-available review of all the clinical trial data it has accumulated over the years.

The turning point was this uncritical article in the Observer about a stricken family with a little girl suffering from a serious brain cancer. The family details their emotional struggle – one which many of us will sympathise wholeheartedly with – and the resulting search for hope, their sights landing on Burzynski’s clinic.

Peter Kay offered to do some benefit gigs to help towards their $200,000 funds goal for this ‘treatment’. These were on the 24th and 25th November last week, and tonight the Comedy Store in Manchester is hosting another with various acts. I also saw a tweet reporting that BBC 6 Music had run an advert for one of the money-raising events.

Many immensely generous donations have been made. It is heartening to see human kindness at work – but so very upsetting given the circumstances.

Here are some e-mails regarding the article that were not published (or at least, not fully) by the Observer – a lot of people are concerned by their endorsement and the lack of provision to challenge what was written. Obviously this is a sensitive issue, around a grief-stricken family, but many others will continue to suffer if this is not properly addressed.

Publicity around this man and his dealings has soared today, as a result of retweets from Stephen Fry, Ben Goldacre, Dave Gorman, Dara O’Briain and continuing valuable support from others such as Simon Singh.

Another friend of mine, Kat, has written a fantastic post for the Cancer Research UK blog – this is serious stuff and those of us who have watched people deal with such a terminal illness do not want to see them swindled, spending their hard-earned savings lining fraudsters’ pockets and losing precious time with their families and loved ones.

Some people who have been directly affected have set up their own website in the hope that others won’t follow in their footsteps: http://www.burzynskiscam.com/

The threats

So, regarding the bullying I mentioned. Rhys wrote a post in mid-August detailing his views of Burzynski, backed up with accounts of past occurrences – including this case:

“Dr. Stanislaw R. Burzynski, had defrauded the plaintiff and violated the terms of the health plan.
We agree that the defendant may not trick the plaintiff into paying for an unlawful, unapproved drug. We AFFIRM.”

and how the 30+ years of trials have yielded very little to support the claims made. Check out Quackwatch from way back in 1998 for more.

He had to take the post down at the beginning of this month but he has now published all the correspondence here – please do have a read (also on Google+, and I’m pasting it below (click ‘read more’ if you’re on the blog homepage and can’t see it) because his site keeps going down!).

His silence was broken because Andy Lewis started receiving his own threats after he wrote his criticism of the Observer article, Kay’s unquestioning support and the issue as a whole. Another here for your amusement. Also read more from The 21st Floor, David Gorski, scienceblogs (good comments), Peter Harrison and Zen Buffy – Josephine Jones is compiling a kind of I Am Spartacus! list for posts on the subject.

Some interesting correspondence

A friend sent me this link to a September 2004 letter to the editor of the academic journal Integrative Cancer Therapies (who have published quite a few of Burzynski’s papers) from a researcher by the name of Andrew Vickers. He takes issue with an article by Burzynski published in the journal in March of that year:

Burzynski SR. The present state of antineoplaston research.
Integr Cancer Ther. 2004;3(1):47-58.

I’ve downloaded and saved this paper if anyone wants a copy, get in touch on Twitter or in the comments so I can e-mail you.

The article cites 73 papers and articles, 38 of which have Burzynski as first author, and a further 10 have his name as one of the first 3 authors – probably he’s in the list somewhere with the rest – plus a couple have one Burzynski B. (presumably a family member). If you search his name in PubMed, 45 articles are returned.

—

Moving on to Andrew’s letter regarding the paper cited above, it’s reasonably short – again if you want the PDF, get in touch, but I’ll paste it here with minimal commentary at intervals.

“Editor:

I read with interest Dr Burzynski’s recent review of research on his technique for treating cancer.1 I have several serious concerns about the scientific quality of his article. The first results presented by Burzynski concern glioma. It is claimed that 7% of 62 evaluable patients had a minor response. However, no fraction of 62 rounds to 7%: 4/62 is 6.45%, 8/62 is 8%*. There is also no fraction of 62 that rounds to 36%, the proportion given for objective response.”

So we can be fairly confident that he’s fiddling numbers from the get-go? * It has been pointed out that this is a mistake: 5/62 is 8%. Presume this is just a typo on Andrew’s part – the point remains.

“Burzynski goes on to report preliminary results of clinical trials on colon cancer conducted at the University of Kurume Medical School in Japan. He claims that the “survival rate of more than 5 years” on antineoplastons was 91% compared to 39% in the chemotherapy control group. Burzynski states that “the study was randomized and compared the results of treatment in 19 patients on . . . chemotherapeutics and antineoplastons [with] 56 patients who received . . . chemotherapy alone.” Yet the reference cited (reference 68) is to a case study. Moreover, a 91% survival rate for 19 patients is impossible, as it corresponds to 17.3 patients.”

 Again some weird numbers coming out, and reference to an article claimed to be about a trial, yet is in fact a study of one case.

“Burzynski also reports a single-arm study of 16 patients with liver cancer in which it is claimed that patients had longer recurrence-free intervals on antineoplastons than off. The citations supporting the claim include a case report and a lab study. Furthermore, the figure illustrating the results shows “time to recurrence [statistic not stated] in patients given antineoplaston AS2-1 after standard chemotherapy compared to control group.” This is despite there being no control group in the study.”

Again no reference to actual trials, but to a single case and lab-based work. Plus a lack of controls (so no valid comparison/conclusion can be made).

“There are several other serious shortcomings of the article. Survival data are presented in bar charts: the techniques for presentation of survival data (such as Kaplan Meier) are well established and were developed specially to deal with issues such as censored data; bar charts are unable to incorporate these features of survival data and are therefore considered inappropriate. No number presented in the text (eg, proportion surviving 5 years) is presented with a measure of uncertainty, such as a standard error or confidence intervals.”

 No reputable clinical study would discuss survival using bar charts. Kaplan-Meier curves have been standard for years. Also he’s presented no statistics for confidence in these numbers.

“I am aware that Burzynski is presenting preliminary data, and I have made no comment or criticism concerning the failure to present inference statistics. Nonetheless, even for a preliminary report, I see no excuse for the use of idiosyncratic and highly inappropriate techniques of presentation, failure to incorporate basic statistical estimates, citation of studies in support of statements when those studies have no bearing on the referring statements, inclusion of obvious mathematical errors, and citation of data for nonexistent control groups.”

He cites Burzynski’s study, to which he is referring, at the end of the letter.

—

Burzynski then wrote a reply! In the same month as Vickers’ letter was published (emphasis mine):

Reply to Vickers 

“Editor:

After reading Andrew Vickers’s letter, one may wonder  why the Assistant Attending Research Methodologist  of the prestigious Memorial Sloan-Kettering  Cancer Center would argue about 0.5% of minor  response and statistics that were not required, while  entirely missing the big picture: a proof of concept  and data on efficacy of antineoplastons in Food and  Drug Administration–supervised clinical trials involving  more than 200 patients. Vickers’s many arguments about unimportant issues obscure the realities of the data that we have presented, which indicate remarkable results in cancers for which chemotherapy and radiation are ineffective.

Publication of my article titled “The Present State of Antineoplaston Research (1)”1 occurred at the same time (March 2004) as the printing of Vickers’s article, “Alternative Cancer Cure: Unproven or Disproven?”  in the March 2004 issue of CA: A Cancer Journal  for Clinicians. In his review article in CA Cancer J Clin, he made reference to only 2 articles on antineoplastons published since 1987. He failed to cite more than 40 of our publications and approximately 300 publications by other authors on antineoplastons and their derivatives. In his letter to the editors, Vickers criticizes reporting of results of the clinical studies conducted at our clinic and also at the University of Kurume Medical School in Japan.  The criticism of our report concerns rounding out percentages to the nearest number. That is why we reported 36% of objective responses instead of 35.5% and 7% of minor responses instead of 6.5%. In the article, I also presented the actual number of patients, allowing readers to make their own calculation.

Vickers objects to my presentation of survival data in bar charts. This objection is unjustified in the context of my review. Kaplan-Meier survival probability estimates are more appropriate for detailed reports describing individual clinical trials. In my review, which describes numerous past clinical trials, there was not enough space for these estimates. Also, one should not compare apples and oranges. We can easily produce Kaplan-Meier diagrams for our studies, but, unfortunately, they were not published for comparison studies, such as Prados et al.2 If Vickers reads our recent articles describing survival in antineoplaston clinical trials, published in peer-reviewed journals between 1999 and 2003, he will indeed find Kaplan-  Meier data. Our data on the proportion of patients surviving 5 years contain no uncertainty, since they are  not estimated but true survivals. The patients are either dead or alive after 5 years. No standard error or confidence intervals are necessary.

The final reports on the studies conducted at the University of Kurume had not yet been published at the time my manuscript was submitted to Integrative Cancer Therapies. Japanese researchers have published preliminary reports and case reports; these were listed as references. The Kurume researchers presented the summary of research data directly to me with permission for publication. I described these as “preliminary results” on page 55 without making any changes.  Those researchers are now preparing the final reports for publication.

In conclusion, I believe I have sufficiently answered  Vickers’s questions regarding the clinical trials conducted  by our clinic. Further details will be provided in a number of articles that are now in preparation for  publication.”

Make of that what you will – no further correspondence noted.

—

I’ll just paste the acknowledgements from the paper in question here as these names may be of interest, and comment that the figures are generally of very poor quality, for a 2004 paper:

The studies were sponsored by the Burzynski Research Institute and supervised by its Institutional Review Board (IRB). The membership of the IRB was in agreement with the FDA. The authors [just Burzynski, for the record] express their appreciation to Lucy Rorke, MD, professor of pathology and neurology, University of Pennsylvania, Children’s Hospital of Philadelphia, for review of pathology slides; Dieter Schellinger, MD, professor of radiology, chief, section of neuro-radiology, Georgetown Hospital, Washington, DC; and Joshua Pleasure, MD, M. D. Anderson Cancer Center, Houston, Texas, for evaluation of MRI and PET scans.

The following physicians at the Burzynski Clinic (BC) participated in the study: Robert I. Lewy, Robert Weaver, Marc Bestak, Maxwell Axler, Alonzo Peters, Benjamin Saling, Barbara Burzynski, Tomasz Janicki, Jaroslaw Paszkowiak, Vishnu Alapati, Dmitri Davydov, Vsevolod Dolgopolov, Barbara Drynia, Andrzej Himmel, Wojciech Iwanowski, Gabor Jurida, Mohammad Khan, Eva Kubove, Grace Ormstein, Joseph Nguyen, Mohammed Radmard, Basel Salhoot, Barbara Szymkowski, and Marek Walczak.

The following senior scientists (PhD), microbiologists, pharmacists, and engineers at the BRI and the BC participated in basic research: Robert Waldbillig, Majciej Klimczak, Elwira Ilkowska-Musial, Leszek Musial, Anna Baranowska, Piotr Kuligowski, Ryszard Madry, Donat Manek, Mike Mokrzycki, Andrzej Wieczorek, Anna Wisniewska, Kris Wisniewski, Irma Witkowska, Dennis Wright, and Iwona Zapedowski.

—

I’ll paste Rhys’ post below in case his site is down.

Victim blaming

This has come up a lot lately (not that it’s a new thing by any means) so I’m going to do a proper post on it. Firstly a warning that what I write might be triggering for people – if you don’t know what that means, do look it up.

Second, I’m going to be using a certain terminology, talking about men who are rapists and women who are victims, mainly because that accounts for the majority of cases.

However, not all of them – it’s important to remember that men can be victims as well and often they face even more stigma than women. It is, rather sadly, an accepted fact that women are often victims of sexual assault. For men, there is often a further element of shame attached if such a thing happens to them. This stops them speaking out and people think the problem is so small as to be insignificant. It isn’t.

Men get drugged, overpowered and frozen by fear, too. Assuming it’s all about the greater strength of a man overpowering a woman is part of the victim-blaming culture; “you didn’t fight back enough”. Sometimes you can’t, sometimes it happens too quickly for you to process – don’t act like you know better than someone who has suffered what you have not.

One (of fortunately few) personal analogies I have is when I was set upon by someone I used to go to school with. She (yes, she) had about 10 friends nearby and my reaction was to wait for her to get bored of punching me, which, fortunately, she did.

You won’t know the details of people’s experiences of attack and betrayal, so don’t presume to tell them what they should have done to avoid it.

It’s simple – the rapist should not have done what they did and they are the only party at fault.

—

Sadly, victim-blaming happens all the time, particularly in the case of women who have the misfortune to experience sexual assault.

There was one recent incident that has highlighted this fact. After an interview with a high-profile rape victim (she pushed strands of her hair into the car seats during her assault, which aided the conviction of her attacker), Eamonn Holmes makes a disgusting and completely pointless comment:

“Well, I hope you take taxis now”

Unfortunately a lot of usually considerate, sensible and caring people will respond to this and similar admonitions with comments along the lines of well it’s just good advice… taxis are safer… you can help to protect yourself etc. etc.

The response I got to my complaint was, pretty much as expected, disappointing.

Hi Marianne

Many thanks for your email. I was the producer on yesterday’s show and can absolutely assure you that Eamonn was certainly not suggesting that the victim was in any way to blame for this horrific attack, he was merely making the point for the benefit of viewers that it is generally safer to call a taxi than to walk the streets alone at night.

I hope this clears up any misunderstanding.

Many thanks

Kirsty

Sorry, but this is not an adequate assessment of the problem, and I’ll leave it for others to expand upon that.

None of us wish to be attacked. We all take precautions when we go out; these are common sense things, we have our instincts and we don’t like putting ourselves in danger. You don’t need to tell adults about these things.

Especially not after the fact. Put a woman in a low-cut top who’s had a few drinks in a room full of people – it doesn’t matter if they’re her friends or total strangers. Put her in another room with another set of people at another time – she has changed nothing, but her company may be different. She may have the misfortune to encounter someone who will assault her.

There have been surveys that reveal disturbing things about the way many people think (in fact rape stats in general are often very shocking).

If you are careful not to use rape specifically as a term when asking people questions about it, a ridiculously high percentage of people will admit to thinking it’s somehow OK.

The culture-wide attitudes towards sexual assaults, responsibilities and rights are rather warped, it would seem. Unfortunately, people will vehemently defend their ‘right’ to tell rape jokes, to mash the term with other words to describe things (frape being one I really hate; when someone uses your facebook account to change your status) et cetera.

These things are intertwined with sexism and other archaic ideas, it’s a complex social and psychological problem that some try hard to combat, not least because the number of victims is so very high, all over the world; of course, rape is still used as a weapon of war in countries experiencing conflict.

The fact that many wish to dismiss it with jokes rather than reprimand their friends who make light of it says a lot. It’s ok to be a bit rapey, it’s just a laugh. She was asking for it, right?

Wrong.

The amount of friends I have who have, over time, revealed to me their experiences… I am now quite surprised if I meet someone who has not experienced sexual violence at some point. Most of those people had abusive partners, but not all. Sometimes “friends”, often family members, rarely total strangers.

How, pray tell, would changing one’s behaviour avoid such situations? I can’t see it myself. The girl in the low-cut top and the drink in her hand can be herself in many situations, but the only thing that causes her to be assaulted is her assailant.

Shaming women because of what they wear, how they behave… that’s what the slut walks were all about.

What is needed is a shift away from blaming women for what happens to them and to society rejecting those who commit crimes, and those who sanction them.

Recently I had a bit of a rant about a Metro article’s language when describing one of Vincent Tabak’s defence lawyer’s statements, somewhat prompted by a Welsh police force’s new poster that did the rounds on Twitter (right).

This again skirts around the fact that rapists cause rape, not women drinking or any other arbitrary behaviour.

Also, if one does express apprehension towards various people or situations, as a woman concerned for one’s safety, men will often pipe up with “hey, that’s offensive! Don’t assume all guys are rapists, that’s just sexist as well” or some other tripe.

You can’t have it both ways. If you’re going to tell women they’re responsible for everything that happens to them, including crimes, then suck it up when you see them taking precautions or getting a ‘creepy vibe’ from someone.

If you’re making excuses for a friend you suspect of having dangerous attitudes towards women, stop and ask yourself if perhaps you could be educating him instead.

We are all daughters, some of us sisters and/or mothers – imagine members of your own family and friends. How would you feel if her friends made jokes about raping her, or took advantage of her when she was too drunk to be responsible for her own actions?

There’s a campaign with the slogan ‘men can stop rape’ – which I don’t entirely agree with based on what I said at the start of the post, but it is often true. Your laugh at that disgusting joke is part of the problem. Your unquestioning attitude, his admission of what he’d do to her if…

Stop blaming women. Start behaving like a civilised human being.