Media manipulation from Hillsborough to Leveson

Soho Skeptics

7/11/12

Chris Atkins is probably best known for his documentary film Starsuckers and he told us a bit about how it came to be and some of what’s happened since at the first Soho Skeptics event last week.

Chris pointed out that his talk could probably be summed up by one story that was doing the rounds that day – that of Brian Cox supposedly slamming the BBC for not letting them listen for alien transmissions live on air, lest it conflict with editorial guidelines…

But moving on to the talk for real, we started with documentaries. What is their purpose? They should communicate truths to the audience. Chris cited 3 of his favourites as Fog of War, Man on Wire, and Inside Job. However, he likes to do the opposite; tell the story through lies in order to expose people.

So how is the media involved in manipulation? Starting with Hillsborough, the Sun printed the headline on 19^th April 1989: “THE TRUTH”. We now know that none of it was in fact true, it was a smear campaign by South Yorkshire police.

“Lies can be made simple and exciting… they make newspaper owners more money”

Tabloid behaviour was satirised but never exposed. So Chris wondered how these wider issues could be exposed? Start with the truth!

Setting up for Starsuckers

They tried talking to editors; asking for interviews and if they could film behind the newspaper scenes. They got a resounding “no” from all quarters for that one.

They also spoke to journalists off-record, who freely admitted “we make things up and steal personal information” but no one would say any of this in public, it would lose them their job! So it was a media secret, kept from customers.

This went on for about a year, until they wondered – what would happen if we called the tip lines and lied? Would people print this stuff? Starting with some ground rules: don’t be too mean to the celebrity in question, you want them to be on-side. Also make it absurd, so that the newspaper takes all the blame.

Success! The Mirror printed their made-up story about Amy Winehouse setting her beehive on fire at a party. So did the Star… who actually added their own details! But that was only the beginning; it ended up on international news websites, which had simply cut and pasted from the ‘original’ story, including the Times of India.

Then there was the Guy Ritchie juggling cutlery in a restaurant and stabbing himself in the face with a fork, which circulated similarly. It seemed they couldn’t make up a story ridiculous enough, and while ethically they couldn’t accept money for doing it as part of the project, the papers do pay people for tips usually.

For example, they planted a story about ‘moving men’ finding physics books in Sarah Harding’s house. The Sun went with “Sarah’s a real boffin” and it ended up on about 30 websites.

About 3 years before the hacking scandal really kicked off, it was noted that papers would break the law to get information and stories. Working undercover, Chris found that £350 could get you someone’s full medical history from the NHS, if you knew who to ask. £500 cash got screenshots of someone’s bank statements from their bank. You could also get mobile phone usage histories and all sorts. There was a private data trade that was well-known and accepted in the media but not really talked about.

Ironically, inspired by the News of the World (NotW), they decided to do a “sting” operation to expose the practices. In Starsuckers Chris posed as someone offering plastic surgery records of celebrities.

Surprisingly, the Express said no because it would be “unethical”! NotW were cautious, asking how this could be “in the public interest”? However, the Mirror were instantly offering tens of thousands of pounds. The Sunday People also offered money and when Chris asked “could we get in trouble for this?” the response was (accompanied by lots of laughing):

“well the PCC [Press Complaints Commission]… is there but don’t worry, we’ll just have to print a small apology somewhere in the paper… it’s a slap on the wrist… the PCC is run by the newspaper editors“

Next problem: how to get publicity for a film which is kicking all the papers in the balls? (Chris’ words there). Go to the Guardian! So they printed the stories; see Paul Lewis’ article for a summary of their success.

The backlash

Tabloid journalists started turning up at Chris’ house. He was threatened with libel by the NotW, who said they’d had their “privacy invaded”! Even using no-win-no-fee lawyers. That went on for a couple of weeks before they caved, and the film went out.

Starsuckers was aired on TV and then e-mails started coming in from students asking if they could make money this way; some were selling their stories then telling Chris about it, some planning to fund the entirety of their university fees this way! Perhaps the best example of the Big Society in action, Chris thought.

Other papers involved simply went with “no comment”.

Leveson

The Guardian broke the Dowler phone hacking story, arrests were made, papers closed, inquiries started.

Chris’ film was referenced during the Leveson inquiry, which was quite surreal. It was used as a stick to beat editors.

Gordon Smart: “I would disagree that [the stories] weren’t true” – but Chris made it up! So apparently the Sun creates facts by printing things. They even cited the internet as proof it was true!! For example re: the Sarah Harding articles. Even the Guardian fell for that argument at one point, showing that people are still misunderstanding how the internet actually works.

The aftermath

The focus then became PR. There are now more people in PR than there are journalists. The news has financial issues, and people are going to PR instead; a >£10bn industry? Indeed, Michael Marshall does a lot of work on ‘Bad News’; click for his talk How PR Came to Rule Modern Journalism.

There are press officers everywhere, and they control what’s printed. People leave journalism, go into PR, and take their contacts with them. From press releases, newspapers get stories, cut-and-paste them and present them as fact.

Nick Davies showed that >50% of articles are in some part from PR in his book Flat Earth News. The Today Programme being one of the worst offenders in this regard.

Chris wondered, could we show how PR becomes news? The Media Standards Trust had a great tool, churnalism.com, which shows which parts of a press release/original text have been cut and pasted unaltered as well as how exactly the whole article matches to the original, giving a “% churn” output.

So, how to press release a piece that’s entirely PR? First, send fake press releases to news desks and analyse the “churn” that comes out.

They decided to work with Valentine’s day, one of the busiest times for PR, when far more than 50% of stories use it; most articles that cite “a study by…” are not about study at all, it is just PR.

Initial attempts weren’t weird enough, for example they tried a law firm showing that Valentine’s was the number 1 day for divorce. But newsdesks get about 300 press releases per day; they sift through them looking for what’s funniest and most interesting.

They did succeed with a story about the “chastity garter“, an accessory that supposedly sent a text from your wife/girlfriend’s thigh to tell you if she was doing stuff she shouldn’t. In fact it was just a plain ribbon garter from ASDA with a digital watched stapled to it.

They send the press release to the Daily Star and they refused to run it, describing it as “disgusting” – from a paper that supports the EDL!!

So instead they looked up local News Agencies, in this case one in Birmingham called Caters. Agencies put the releases on a newswire; their garter story then ended up in The Daily Star, on page 5, chunks of it verbatim! It was very much “churned”, with 39% cut from the press release. It then ended up in the Mail and in global news and even on television. See here for the story.

Downing Street Cat

Getting stories out tends to involve latching on to pre-existing narratives. Facebook is used as a news source now; quotes, photos and videos are taken from people’s pages.

For example, the Sun rips videos from YouTube, puts an ad at the front, embeds it on their website and makes plenty of money from it.

Chris and his colleagues set up a Facebook group about the cat that was supposedly missing from Downing Street, saying that it wasn’t Cameron’s, Larry’s ours! The cat was originally from Battersea so it was possible… the page was entitled “Free ‘Jo’ the cat from Downing Street!” and about an hour later, the Daily Mail messaged them saying “we are intending to take… comments, pictures…” – not asking them, but informing them of their intention to use material from the page in their story.

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All in all Chris very effectively summed up the mechanisms that get lies into the media and back out into public opinion. Even if the videos weren’t behaving on the night…

Q&A

- If we know most of the media is bullshit, what can we do about it??

A) Leveson seems to be helping? It’s on the agenda now, and is a political concern. Murdoch ‘cast a spell over British politics’ – it was a ‘cancer’. The spell might be broken now? MPs came forward to say how much they hated his empire, and MPs should be scared of us.

Chris recalled tweeting the NotW newsdesk number with “please don’t call this number and call them c*nts” – so many people did that the switchboard shut it down!

Mumsnet started the sponsor boycott to hit the papers where it hurt (their wallets).

What can we do? Write to people; MPs, the press, etc.

There should be regulations on the press but they do still need to hold politicians to account. Maybe if there’s no shit to write they’ll start writing about things that are actually important instead..?

- Do you consider yourself a journalist?

A) I’m a filmmaker and I do journalism… I have been, but it’s not my job.

- How in the future can you survive financially?

A) I’m dancing on my own grave! The TV can laugh at print media, which is buggered… people are finding ways. The Evening Standard is in profit! Maybe making money trough advertising online and page views…

- Given the reach of Leveson, how would you address the relationship between news/media and politics?

A) Symbiotic? There’s a book: Where Power Lies. It’s about prime ministers and what happened to them in terms of how much they ignored or obsessed over the press.

For the former, they were more successful politicians. The papers went to them. Compared to, say, Blair who very much did the latter and created policies to fit headlines. It worked in the Sun but… a vicious cycle of authoritarianism.

Politicians should be themselves but think they need the coverage. It’s about the skill of the media over politics now – which is destructive. There are still some genuine politicians though. (Read the book!).

- Why are the small lies of any consequence? Like the Winehouse thing. Did it really affect anyone??

A) The point is the path of journalists from the bizarre columns/gossip desks/diaries. People start there.

Tabloids use celeb stories more, because they’re more successful! Budding journos get their headlines on the front page and their name in the bylines.

For example, Gordon Smart… Andy Coulson! Piers Morgan… Dominic Mohan.

It starts here. 20 stories/day, no fact-checking time.

If you can be a bad journalist, you can move up the ladder fast. Piers Morgan edited the NotW at 28 years old. He was at the Mirror for 10 years. His work endangered soldiers’ lives.

Running newspapers means deciding elections. The ‘small lies’ are the start of the rot.

[It's a slippery slope].

- Did you not target the Guardian?

A) They don’t pay for stories! We wanted to expose how the payments influenced. More lies à more ££. They were exempt really, they didn’t have a tip-line.

Regarding the Urban Fox Hunting hoax, in 24 hours it went viral, and they started getting death threats. All the papers ran it, including the Guardian. But they asked them to do the reveal to avoid the threats, which they did.

- First, congratulations,… re: the bizarre column. Papers also employ very few people for the number of pages they have to put out. There are too few journalists to print the “proper stories”. What are papers to do when there’s no one to fact-check?

A) Don’t know! In 5yrs will we buy papers?

Straw poll of the room: who’s bought a paper in the week? About 30%.

Print ads earn far more money than online/digital ads. Celeb stories get the most clicks. You know online who’s reading what – it’s very depressing to see what the public is interested in (except us in this room of course…) – it herds journalists.

comment! Print commitment lends more authority to the story?

- Do journalists care about this?

A) It’s kind of like the tabloids. Not all bad. E.g. Morgan was against the Iraq war, the Sun’s cot death research campaign… the Mail printing the Lawrence killers on the front page got them sent down.

Sometimes they do good things. The Mail on Sunday has great investigative journalism. We want tabloids to survive and do what they do well!

There is some nuance in the media beyond good/bad.

- The US has a fact-check culture; it’s very laborious and expensive, do we want it here?

A) International (European) papers changed their editorial policy because of our work. In the US, it is good. It’s healthy! It’s a pain and yes, expensive, also delays stories… but…

e.g. the Daily Star, 3 people with hangovers on a Sunday doing a whole paper from wikipedia! Their 8 page pull-out of Michael Jackson was entirely wikipedia.

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The audio from the talk will also be available via PodDelusion.co.uk soon!

John Maddox Prize 2012

Comments on this post are now closed – thank you to all civil contributors!

Last night I was lucky to be at the Royal Pharmaceutical Society for the annual Sense About Science reception.

I am a member of Voice of Young Science, which is a network set up and supported by SAS that allows young scientists to get involved with pro-science activism. Through this group, we are able to participate in public-facing discourse about science and challenge common misconceptions. This takes the form of supporting campaigns (such as Libel Reform) and contributing to publications. For example, I picked up a copy of Peer Review: the nuts and bolts last night because I joined discussions about its content and aims. Anyone young scientists who’d like to, definitely sign up!

Many of us London-based VOYS members went along last night to show our support for SAS and the RPS, and to find out who won the first John Maddox Prize for Standing up for Science. Sir John Maddox was a long-term editor of Nature and helped expand Sense About Science as a charity, supporting and encouraging its work, as well as helping to establish programmes like VOYS.

Two prizes were awarded this year:

Shi-min Fang

Many of us are aware that China is plagued by superstition and dangerous “traditional” cures in the medical field, which costs many lives needlessly. Shi-min Fang has worked tirelessly to expose clinics that take advantage of people by selling unproven treatments, and to help the public understand the importance of evidence. He is a freelance journalist and has endured threats to his life and physical assaults because of his work. His acceptance video was moving, including:

I consider this award as an acknowledgment of our efforts from the international science community and I deeply appreciate it

Here’s some more on his homepage. Shi-min is clearly deserving of the prize given the scale of what he has undertaken and what he has suffered through standing up for his principles, and for scientific evidence, trying to help others and improve healthcare in his country. Edit: here’s an interview with him on New Scientist about exposing fraud in Chinese research.

Professor Simon Wessely

Professor Wessely has worked for many years on ME (chronic fatigue syndrome) and Gulf War syndrome. ME has been a disease surrounded by controversy, with some people disparaging sufferers as “fakers”, and some patients completely reluctant to consider the condition as anything like a mental health disorder, preferring to insist it is due to an as-yet-undiscovered virus, for example. While those such as Professor Wessely try to help patients through research, and have indeed challenged the misconceptions surrounding ME sufferers, they are also targeted by people who are angry that they are not doing the “right kind of research”.

Wessely has, as a result, been the target of threats and campaigns to discredit him and his colleagues. Wessely acknowledged these colleagues with his acceptance:

I have been helped and sustained by the support of so many other wonderful clinicians and scientists who work in the same field and have had similar experiences to me over the years, any one of whom would have been equally worthy of this honour

See here for a discussion of some of the early work on these conditions, and here for an interview with Wessely from 2006 that goes over the whole story. Edit: following lengthy discussion below and some posts elsewhere about the prize, the Independent has an article on the controversy, too.
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All in all it was a lovely evening with many friendly faces and some inspiring words from people doing fantastic things for science. Then some fun times in the pub! Perfect, really. Some video of the winners here, New Scientist also has a piece about the event, and here’s Nature’s editorial.

Keep an eye on Sense About Science‘s activities and do get involved!

Libel Reform update: 3 years on

Background

A couple of years back I attended a Skeptics in the Pub meeting in Holborn at which Dave Gorman and Prof Brian Cox came to support Simon Singh. He had been served a libel threat by the British Chiropractic Association (BCA) for criticising claims from chiropractors about curing colic in babies and so on. A dangerous claim to make, and, as Simon put it, a “bogus” one.

Fortunately, Simon won his case. Others haven’t been so lucky, and more threats are being issued.

There are many problems with the UK libel laws – lots of background information can be found here at libelreform.org and I’ve written some posts over the years (really rather a lot of posts actually), if you’re interested in past events.

Essentially libel laws are often used to silence fair, necessary and important criticism. People without the money to fight these hideously expensive cases tend to just give up. Individuals are bullied by large corporations, medical debates are stifled, unethical behaviour is hidden.

The libel reform campaign has been set up and run by the three charities, Sense About Science, English Pen and Index on Censorship. Two years ago there was the Big Libel Gig, to fundraise for victims of libel threats.

Libel Reform in Parliament

So today’s journey to the Houses of Parliament (committee room 11, in fact – compared to 14 two years back!) was to look at the current situation. A draft bill has gone through (and sorry, from the get-go, my legal/political terminology is likely to be incorrect at times – feel free to correct it!) and we’re looking at how it measures up to the promises given by all three parties before the last general election, to see if the proposed changes are what we need.

Me looking bored in orange – just concentrating, honest! (Photo from @mwstory)

In attendance today were Dara O’Briain, Brian Cox, Dave Gorman, Ben Goldacre, Jon Butterworth, Evan Harris, Peter Wilmshurst and many others, we packed out the committee room like last time. A summary from the Guardian here and Mike Harris writes, too.

Speakers

I’ll go through the speakers in the order they appeared with any comments/links I feel necessary! Here’s an awesome video summary from the day:

Kirsty Hughes - Index on Censorship chief exec.

Kirsty gave a quick introduction and mentioned the passing of the USA’s SPEECH Act, which prevented foreign libel suits from being enforced in the US – a measure to counteract libel tourism, which is a big problem with our own libel system.

Jo Glanville – Index on Censorship editor and incoming English PEN director

Jo mentioned that in the current bill, libel tourism and libel chills in peer review situations have been addressed, but the public interest defence has not, nor has the issue of corporations vs. individuals. Due process for online forums should also be considered (the lack of provision for the internet age is a common problem in our legal system – coincidentally the Twitter Joke Trial was ongoing as well today).

Robert Flello – Labour MP for Stoke-on-Trent

Robert asked how anyone can possibly interpret these laws and defend themselves, not being a lawyer himself and having tried to “get to grips with things”, while he has more resources available to him than perhaps the average person. He stressed that the libel threat letters sent to people are intimidating and bullying, and much work is still needed to improve the bill. It shouldn’t always have to involve the courts so the clarity must be there, in addition to sorting out the corporations issue. While government is in recess for the summer, lobbying must continue for all that time in order to add new clauses.

David Davis – Conservative MP for Haltemprice and Howden

David said we must “extend protection to anyone making well-informed, well-intentioned critical comments that are in the public interest”. Regarding the phenomenon of parliamentary privilege in the commons, he pointed out this kind of protection should also operate in science and medicine, where it’s vital we can have debates without fear of being silenced.

He asked rhetorically whether the parties have understood what is being asked of them, considering the complexity of the issue. The public interest defence aspect is still impenetrable and we don’t just want to rely on ministers being persuaded over the summer – coalitions respond to pressume fromt he back benches, so what is wanted and why must be made clear [I'd say it's pretty clear already, but hey].

We all need to be able to say when someone is/people are wrong and “behaving like charlatans”!

Simon Singh – funky-haired mathematician, author and TV bloke

It’s all been going for 3 years! Simon recalled the first meeting at SitP and that everyone in attendance agreed it was a disgraced that people could be silenced in this way. As a thought experiment, he asked if we passed the current bill and there was a new case… what then? Actually, nothing has really changed. It would still eat 2.5yrs of your life and cost you a hell of a lot of money.

So, we have to change it, including the public interest defence in particular. Clegg apparently said it should be an “international blueprint” and Lord McNally said “this will be my legacy”. But new cases are still happening, and the chill is still there. We have to make the politicians understand!

Dave Gorman – comedian, author and presenter

Dave has written his own post here. He started by asking us to look at Simon’s case from the BCA’s point of view. Were they lying when they made their claims? If not, then they should have welcomed the debate that ensued. They were given the right of reply to Simon’s Guardian article to explain their claims, they declined. They just wanted to silence their critics.

What about the thousands of cases that don’t get to court? People who can’t afford it and are scared into keeping quiet. What truths are we not hearing??

Kamila Shamsie – novelist

Kamila wished to highlight that the arts also suffer libel chilling effects. Novels have been written and people have decided that characters resemble them closely, have sued, and the book disappears. Libel also affects our culture because of self-censorship. Publishers often can’t afford to spend money on laywers as well as new novelists. People are marginalised and shut out, and small publishers can be put out of business entirely.

Ben Goldacre - Doctor, author, massive nerd

Ben was sued by Matthias Rath, a vitamin pill salesman who tried (and sadly succeeded a lot) to convince people that taking his pills would cure them of HIV/AIDS. His case lasted 17 months, cost £535,000 and even though they won, only £365,000 of the costs were recouped, meaning that winning such a libel case still costs £175,000 (thankfully picked up by the Guardian) and a hell of a lot of your time.

Medicine is full of claims that are dangerous, people make mistakes trying to good, and sometimes charlatans step in deliberately misleading people. We must be able to criticise because people’s lives are at risk.

Ben ended with: “Do you want us to stand up and criticise these people, or do you want us to shut up?“

Dara Ó Briain – comedian and presenter

He does a lot of talking on stage, taking the piss out of quacks and bad science and the like. Ben and Simon are quite well-versed in the background though, yet have still faced this problem – how is he supposed to feel! The chilling effect is far-reaching.

The Reynolds defence applies specifically to the media and journalists and as such doesn’t work for small groups/organisations or individuals, bloggers, etc. With respect to those who use libel threats to unjustly maintain misleading reputations and claims, “we cannot offer them the privilege of not having their feelings hurt“.

Brian Cox - pretty physics prof., presenter, pianist (all the Ps! Wait, what?)

Here’s Brian summing up on BBC News. He kept it short yesterday, but emphasised that the scientific process is, unsurprisingly, really important in science! It has to be protected; if the laws aren’t reformed, people can’t work in the way they need in order to do their science.

Katie O’Donovan - of mumsnet.com

The national importance of libel reform had been highlighted so far but Katie wanted to emphasise the public and personal need for freedom of speech protection. Protection for people discussing spurious claims made by people and companies about food, birth and so on – people need to digest these claims without the libel chill hanging over them and its potential threat to their livelihood. What is the value of anonymity online? A huge debate, it has its problems (trolls, bullying etc.), but it’s also vital in allowing people to talk freely, protecting themselves from potential dangers (think victims of violence) and obtain advice – the potential is there in the bill but it needs to be improved.

David Marshall - Which? consumer group

Evan started by pointing out that consumer organisations, such as Which?, sort through the vast number of claims made by companies trying to sell us things.

David highlighted two points of law (that I admit mostly went over my head), the first being the Reynolds defence as a public interest defence – possibly more? The second being that corporations are often using libel as reputation management. It’s a poor way to do business, just by silencing your potential critics!

Stuart Jones - biochemist, new libel victim

Stuart works for the NHS as a biochemist and just last week was threatened with a libel suit by Dr Sarah Myhill after raising concerns about her practice (details from Sense About Science, who are helping, along with some well-known “charitable lawyers”!) He wanted to speak about the feelings caused by receiving such a letter, after trying to do something important and good, realising that someone wishes to bankrupt you. He referred to the “months of legal wrangling” defending your comments, which makes you feel depressed, powerless and importantly puts you off doing the right thing in future. Ultimately, patients suffer. He ended by asking: “Who exactly are Britain’s libel laws currently protecting?“

Kate Briscoe - www.legalbeagles.info

Legal Beagles is an OFT-approved free consumer legal advice service. They received a defamation libel threat from Schillings, a privacy law firm, regarding their clients Retail Loss Prevention Ltd. RLP carry out “civil recovery demands” following shoplifting allegations; intimidating and often disproportionate demands of recompense from the supposed perpetrators. This indiscriminately includes the mentally ill (e.g. people suffering from dementia who cannot be held fully responsible for their actions) and even parents who return items taken by their children without their knowledge.

There was a discussion about RLP in their forum, and it is hoped that the whole practice of civil recovery should dissolve soon. Schillings requested IPs and contact details be given of all posters, and that they all be banned from the forum (including the owners!!). Given that Legle Beagles have no assets or property and technically nothing to lose, they are admirably taking on this bullying company. After learning that Schillings are threatening other consumer services, including the Citizens’ Advice Bureau(!), Legal Beagles have published the letter in full. Amusing, given that Schillings say on their website, “Resolution: achieved out of the spotlight”!!

Kate ended with one of my favourite points: “You have to be super-rich or penniless to deal with such a threat“.

Lord McNally - Minister of State for Justice

He started by poking fun at Evan, saying he “not only invites you to speak, but tells you what to say as well!”. Ehem. He went on to thank the allies, Pen, INDEX and SAS, and pulled up Dara’s statement that we’re “no further forward”, but pointing out that we were “not in the pub”! And that it’s quite a long way to have come. 18 months ago the private members’ bill was drawn up, following pre-legislation it’s now in the Commons and will come back in Autumn then into the Lords’ around November. It was hoped that it would all be done before Leveson but sadly…

The “balance” on public interest may not be right, so that’s “to play for”, apparently. He reassured us that we are “mid-way through”, with support from all three major parties. He said, “even if you don’t get everything you want, libel is now being reformed before parliament” – I’m not sure how comforting that is! Amendments are often strengthened so it will be talked about again, and we shouldn’t be pessimistic.

The question of the internet is difficult, he is aware of the need ot protect freedom online, particularly considering the replication and privacy issues. [The problem of the government largely being made up of people who do not understand the way the internet works or truly wish to protect it is a debate for another time].

They are attempting, honestly, to improve the law. It isn’t a party political issue and it’s a chance to make a good piece of legislation. That is still his intention.

Peter Wilmshurst - consultant cardiologist

Peter recalled that NMT Medical, an American company that made experimental medical devices, brought three libel/slander claims against him. Over four years and £300,000 later, NMT went into liquidation and the ordeal appeared to come to an end at last. He wouldn’t have coped without getting his lawyer, Mark Lewis, on a conditional fee agreement (CFA). The National Research Ethics Service (NRES) found that Peter was not at fault with his comments about NMT’s devices (potentially dangerous to patients).

He was advised that counter-suing would probably be futile, costing upwards of a million pounds. They can’t recoup the costs from the American company now and, worryingly, between 2007-2011 patients have still received NMT devices. The legal action prevented any future discussion of the matter. As a result, patients have suffered heart erosion, replacement implants, perforations and emergency surgeries, and at least one death.

Lawyers have stated that if the current proposals were in force, it would make no difference to how this case played out.

Tim Appenzeller- chief editor, Nature magazine

Tim highlighted the chilling effect of libel on journalism. Nature not only publishes peer-reviewed research articles, but also opinion pieces and journalism, as well as daily publishing online. For every piece they have to waste time and resources on calculating the benefits and importance of the contents versus the risk if they publish. Too much never makes it to the public demain because of this.

Simon Hughes- LibDem MP for Bermondsey and Old Southwark

Simon agreed that the corporate sector can be very intimidating to individuals, and we need to support them and make sure defence is available. “Don’t go to sleep or disappear over the next few months!” was his advice to the libel reform campaigners.

Finally, we had some comments from Andy Slaughter (Labour MP for Hammersmith) and Tracey Brown (Sense About Science director, who said “the law might be complicated, but the issues are not… what kind of society do we want?“

The session was closed by Paul Farrelly (Labour MP for Newcastle-Under-Lyme). We then trekked over to Downing Street where Dara, Brian, Dave and co. delivered the petition box to Number 10.

I had a bit of a chat with people after that, then lunch with friends, and altogether it was a nice day. Encouraging but sometimes sad because people are still dealing with this, injustices are still happening. But we’re getting there – thanks to everyone who’s been involved in the Libel Reform Campaign! Keep it up!

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.

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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.

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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.

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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.

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

The 3rd Perspective

In the spheres of skepticism and alternative health there are two main perspectives we encounter:

The ‘good’ and the ‘bad’

1)      That of the incredulous skeptic who insists all is bullshit, gets angry at the quacks and tries to stop them peddling rubbish at gullible people.

2)      The alt med proponents; be they sellers or consumers, they aggressively try to persuade you that it works and big pharma/your doctor are lying to you and the global conspiracy has suppressed all the ‘natural cures’.

Of course there are various severities of those views, stronger and milder, but they’re the most prominent types.

The Ugly?

However, there is a point of view that receives less attention. The sufferers of chronic incurable conditions whose friends and family, often merely out of care and concern, insist on telling them about this or that treatment/remedy/ritual/product that will make them better or even cure them.

Once or twice these suggestions can be laughed off or you can humour the person, but after a while it becomes more difficult to ignore.

One of my best internet friends (we’ve never met but have talked for years) has Ehlers-Danlos syndrome (EDS), a rare genetic disorder that affects connective tissue and causes frequent and painful dislocations and many other complications, depending on the exact mutation involved, that can make life very difficult.

Recently she’s expressed extreme frustration at all the people sending her articles about things that will cure or make her feel better. She suffers from other conditions as well, including Crohn’s disease, which gives the obsessive alt medders even more ammunition. I’m going to use her words (with her permission) because they convey the feeling better than my commentary would.

Here’s your anecdotal evidence

“I now have three people trying to convince me that eating right (read bizarre hippie stuff) will “cure” my EDS. Yes cure the syndrome I have, which is caused by a faulty gene I was born with.

I’ve to boil a chicken for at least 24 hours, until the collagen in its joints breaks down, because consuming that will cure me. To think I’ve wasted all this time going to doctors who’ve only studied the condition for years and know how genes work. I should have been chatting to this woman who read a page on the internet! It had nothing to do with EDS but her logic is sound.

Until this cure kicks in, I’ve to make an “elixir” of grains which have been fermented in raw milk from a pastured cow, raw honey, chillies, vinegar and mixed aromatic spices, which has been left to stand in a dark cupboard. I’ve to make it on the night of a new moon and allow it to brew until the next new moon. I then swallow a few spoonfuls several times a day. This will build up my strength, prevent pain and stop me from catching any viruses. It’s been proven to work. The guy whose website it’s on has posted several testimonies from people who tried it (the ones who didn’t die one assumes).

I’m only in pain though because I take painkillers (amazing how that works, I thought I didn’t start taking them until I was in pain!). Oh and my genetic abnormality (that I was born with) was caused by my being fed that poison called baby milk and getting the rubella vaccine (after I was born).

Another concerned friend enlightened me with the fact that if I consume large quantities of raw milk, raw butter and raw eggs, again from those “pastured” animals, along with “good meat”, more fermented grains and fermented beans, I will cure both my Crohn’s and psoriasis pretty much immediately. She has a friend who did it and cured herself and all her children. Those idiot doctors are just trying to make money so they hide the truth from us. There are several websites that prove this too.

Yet another friend knows of an homeopathic pill which will also cure my psoriasis. Yup, expensive water on sugar pills, plus fermented beans, will cure my autoimmune diseases.”

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(To jump in here myself – my friend is obviously very sensible and intelligent, she knows all this is nonsense. But not everyone has that advantage and there are a lot of vulnerable people looking for advice and support online, including very seriously ill individuals…)

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Dangerous advice

“A woman posted on a forum looking for advice. She has breast cancer and breastfeeds. She’s about to start chemo and radiotherapy so has to stop feeding her baby this way. Her baby refuses to take a bottle though and frequently uses the breast for comfort but won’t take a dummy. What should she do to help him adjust? Well these educated women leapt in to help:

DO NOT go for chemo or radiotherapy, it kills more people than they let you know. Instead, go to this website or that website where they have “proven” you can cure cancer with the right diet. All you need is this combination of supplements and drink lots of vegetable juice. Don’t go back to your doctor, this man has a Facebook page that explains how to cure cancer naturally.

The best one?

You have lots of time before you need to worry, don’t trust your doctor. It’s much safer to use this diet.

Apparently, just by reading some website she trundled across one day, this woman is able to asses the progression and stage of your cancer and determine how much danger you’re in. Since she obviously knows more than any oncologist (well have you ever heard of one with this amazing skill?) I think we should all listen to her. Damn the big pharmaceutical companies and their sinister plot to suppress this life-saving knowledge. All it takes is some fermented grains, the tumor will evaporate and all remaining cancerous cells will reverse-mutate into happy ones again.

Seriously there were so many people claiming this stuff. It was scary. I hope this poor woman has the sense to ignore them. How vile can you get?  They are risking the life of a woman, with very young children, a woman they don’t even know! All because of their paranoia and their hatred of doctors and drug companies.

Oh and don’t get me started on their claims about what chiropractic can do. So many, Americans especially, believe in chiropractic and homeopathy. I wonder if they have ever actually looked at how these “treatments” are supposed to work? It’s the most surreal nonsense ever. Someone did say I should go to a chiropractor for my Crohn’s once. Of course, it’s obvious, cracking my spine is sure to stop my immune system from attacking my gut.

I know people on Facebook who take their newborn babies to chiropractors. It’s madness. Why the hell would you trust some glorified massage therapist to manipulate your baby’s spine? At best it’s painful and scary for them. God knows what they could accidentally do.

Then there are my ‘real life’ friends who keep trying to convince me I should let them do Reiki on me. It’s so logical, have someone hold their hands somewhere near you while they think really hard. I bet I can stop taking my pills after just a couple of sessions.”

I’m not stupid

“I know it comes from them wanting to help but I think it’s also that they want to show how much they “know”. They’re also saying that they know much better than me, the person who has to live with these conditions, and implying that I haven’t bothered to do any research. If I had, then of course I would have come to the same conclusion as them.

If anyone dares challenge their opinions, it’s claimed that you just haven’t done enough research. Apparently doctors do not use evidence based information in their treatments. I had one person tell me that some people want to heal themselves, others just want to treat the symptoms. Basically saying that my choice of conventional medication and therapies is stupid. I actually get pitied for trusting the doctors who have specialised in my disease for most of their lives. Who have seen thousands of people like me and have been able to compare their histories, eating habits and symptoms.

It’s draining and sometimes offensive. I don’t want to upset anyone by asking them to shut up about this stuff, so I bite my tongue but it gets to me after a while. I am not an idiot and I’m not naive. I am doing what I believe is best for me and for my family. I’m sick of the attitude and frustrated that they don’t respect my choices. Especially considering the stuff they choose to believe is based on bizarre, illogical claims.

At best their repeated claims are annoying and frustrating. At worst they’re downright dangerous. I don’t have an annoying cramp or a case of the runs. I have a very serious disease which almost killed me. It will not go away and there is every chance my life will be in danger again. If they hadn’t gotten my immune system under control, it would have destroyed my bowel. Now imagine that I had been determined to not take any of these “toxic” drugs. My body could have been so badly diseased that I couldn’t recover, that’s if I didn’t starve to death.

The only reason I am able to eat now is that I take two different pills, three times every day, which stop me rejecting everything I eat and drink. Trying to digest pulses would be so dangerous for me. Yet these people insist it’s what I need to do to get better. Thank god I know enough about my body and my disease that I haven’t tried it.

What if I didn’t know that? What if that poor women with cancer isn’t smart enough to immediately dismiss everything she was told? It was all presented as fact. “

—

She also has issues with the amount of prayers people are offering, something I agree with but not everyone will and not as potentially dangerous as the kinds of things discussed here – so I’ll leave that out for now. Another popular one, especially on Facebook, at the moment is chemtrails. Sigh.

Not only risking yourself

While the stories of people choosing woo to treat their own conditions is sad in itself, worse still is people forcing it upon their children, potentially risking their lives.

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“One of my ‘friends’ daughters developed a severe rash, really nasty. It seemed allergic. She decided not to get it treated at all. Instead she dabbed breast milk on it and left her body to fight it. She actually risked her daughter, not herself. Refused to get it checked even though it was horrendous. She posted photos of it in her blog. It spread over her entire body, which was all swollen. Her face swelled badly, closing her eyes.
She knows better than any doctor though. The breastfeeding, no-vaxing mothers all talk about how amazingly healthy their children are…”

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In addition, not only do these attitudes endanger them and their children, but other people’s as well. Declining herd immunity means we have seen resurgences of whooping cough and measles, for example.

Yet now, people are trying to promote recovery from Andrew Wakefield‘s fraudulent claims in the form of publicly-available written accounts, our libel laws are once again an impediment – fascinating and disturbing that the solicitor who paid Wakefield is also the director of the Society of Homeopaths, considering homeopathic measles ‘vaccines’ have been under scrutiny of late (on Newsnight, for example). Just sayin’.

We’ve a very long way to go.

I consider myself a very tolerant person but it is so so hard sometimes. When I’m repeatedly confronted by this idiocy it weighs me down. The religious nonsense is very hard. Even the ones who are otherwise nice people are tainted by their faith. They’re closed-minded, judgemental, bigoted, condescending and rude. Not to mention completely irrational and illogical, willing to dismiss extremely obvious facts if they even slightly contradict the doctrine.