Fish in a barrel

This is a guest post from Ian (@teachingofsci), which I think is a calm demonstration of why so many who try to engage with proponents of alt med end up seriously lacking a feeling of calm.

I have had similar situations in which I’ve tried to converse with otherwise intelligent, rational, friendly people, who have shouted that they will not read anything I ask them to read before we can continue the conversation with a bit more information behind us. If people are unwilling even to look at evidence that might not support their view, what’s the point, really?

Different people have different ways of going about skeptical activism, and advocating rational thinking – often with an ultimate goal of protecting gullible and vulnerable people from those who would profit from their ignorance, and perhaps simultaneously endanger their health. I don’t believe there’s a right way, but sometimes this kind of tactic can prove useful. Enjoy!

Following the BBC exposé showing that some companies and pharmacies are still selling homeopathic ‘remedies’ as if they worked as vaccines for serious illnesses (summarised at the Nightingale Collaboration), I saw some retweeted comments from @JessPinkus. Some of them were quite aggressive, and her stream included one directed to @drwollastonmp suggesting doctors recommend vaccines to make a profit. I found this quite ironic. She and many other fans of alternative medicine often raise the ethical issue of potentially damaging treatment for children. Medical professionals always consider this risk, which in most vaccines is vanishingly small. But she exaggerates this for real vaccines yet fails to apply the concept to homeopathy. It is legitimate to raise the side effects of vaccines, but only if compared to (a) vaccine benefits and (b) risks of (ineffective) homeopathy.

It’s reasonable to say that as the daughter of Tony Pinkus (of Ainsworth’s ‘Pharmacy’) she has probably been brought up with a fairly biased view of the usefulness of homeopathy, and feels she is defending her family. She pointed out that even though unvaccinated she has not suffered from pertussis, failing to recognise the protection she is offered by everyone else’s herd immunity. I’d like to place on the record that I am sure she is sincere.

That doesn’t mean she’s right.

After swapping a few tweets, I invited her to send me pro-homeopathy info, which I would read and comment on. In exchange I suggested she read and comment on Ben Goldacre’s 2009 piece in the Guardian. I would then blog about both sources and responses. She agreed and I shortly received an email with her comments and three documents as pdfs.

She then tweeted that she didn’t want me blogging it, didn’t want me to include her email and didn’t want her name mentioned.

Well, perhaps she misunderstood and thought I meant her email address, which obviously I would never share. But just in case she meant the text as well – despite agreeing to the original proposal – I shall summarise her response rather than quote it.

Comments on “Against” Evidence

I should emphasize that my correspondent did not actually engage with any of the ideas in the article. She wrote that she hadn’t read it properly, because she had read loads of similar things before. Instead her email made several points, which I have paraphrased.

  • Medical companies have a vested interest in keeping people ill to sell more drugs.
  • Homeopathy cures people and their symptoms disappear (correlation not causation, regression to the mean).
  • Drugs companies fund groups including the BBC (my emphasis) to criticise homeopathy (conspiracy theory).
  • Homeopathy is popular which proves it must work (appeal to popularity).
  • We can’t criticise homeopathy by asking for data, because that can’t contradict the experience of patients (anecdotal evidence).
  • Homeopathy is a choice and people should be allowed to make their own choice (she did not specify an informed choice).

I think the links sum up my thoughts quite clearly…

“For” Evidence

The three papers that were attached included a highly speculative model of how homeopathy might work, and a study looking at measured changes in EEG graphs when subjects were exposed to remedies. The last was effectively an advert from the Society of Homeopaths, but fails to make clear that their ‘meta-analyses’ only reference positive studies. They have still failed to produce evidence to contradict the 2005 Shang study, as Alan Henness has explained in the BMJ Rabid Responses.

Conclusion

I didn’t change her opinion. She didn’t even read the article I sent. I should have heeded the excellent advice implicit in the classic xkcd cartoon.

I did, however, get a fresh reminder about how so many people prefer anecdotes to evidence. It also encouraged me to look at this specific case with interest. While defending her father she linked to the letters published by the BBC. I feel these show very carefully chosen wording, perhaps designed to evade responsibility while still giving a clear recommendation for ineffective products. He presumably had this adjudication from the ASA in mind. (For other claims by Tony Pinkus you can see an article on homeopathy being used in Cuba.)

The real point I failed to get across is that the use of homeopathic medicines – even if the choice is truly informed, which is the last thing adherents want – really does have side effects. It limits effective medical care, and it affects society in the form of endangered children and adults. Despite appearing cheap, its failure to have any non-placebo effect means it is far less cost-effective than actual medicine. And if we allow homeopaths to use the language of ‘patient choice’ unchallenged they will continue taking advantage of the vulnerable.—

You can see Ian’s blogposts over on his site, here.

ALL the trials!

Be aware of this new and incredibly important campaign: alltrials.

It’s time all clinical trial results are reported. Patients, researchers, doctors and regulators everywhere in the world will benefit from publication of clinical trial results.

Please sign the petition

Please do. Doctors cannot prescribe the most suitable treatments, if they don’t know what the most suitable treatments are due to lacking information. Patients therefore suffer. Academics cannot plan their research effectively without knowing previous results. The government cannot make appropriate funding decisions without this information, either.

So, help to make ALL clinical trial data available to everyone who needs it – all of us.

Edit 05/02/13: GSK have just signed up! Amazing! Ben has written a quick post on it and here’s the alltrials news.

Here’s a bit about why alltrials is important, in the form of a write-up of Dr Ben Goldacre‘s talk in late 2012 for Soho Skeptics (albeit in a King’s lecture theatre near Waterloo…).

Bad Pharma

Obviously the title of Ben’s new book, which I’m sure he will be happy for you to buy!

So the main problems are: withheld trials; poorly designed trials and ignoring opportunities to run them; the failure to distribute results.

Evidence-based medicine (EBM) incorporates: fair tests; good analysis; spreading information. So, as it stands, a lot of non-evidence-based medicine seems to be going on, and not just from the usual quacks.

Drug development is a tricky business, and an extraordinarily expensive one. But sometimes a new drug gets through the early stages of testing to the point where we need to see what happens when it’s given to people. A famous example of how not to do this is now the trial at Northwick Park hospital (very near where I live now, incidentally) back in 2006.

Groups of patients are not given doses of experimental drugs in quick succession precisely for this reason. If the first has a severe reaction, quickly, you avoid causing it again! Apparently, several years before this a similar molecule was tested, but was abandoned. However, because the information wasn’t published, the warning was hidden. Although immunologists may find universal T-cell activation to be an… unwise pursuit regardless.

The European Medicines Agency (EMA) should have a registry of all European trials, but there are still several thousand missing. 14,000 phase 1 trials are hidden.

In the 80s, anti-arrhythmia drugs were prescribed for irregular heart rhythms following heart attack to prevent deaths. However, 130,000 people died before people noticed it was having the opposite effect.

The Cochrane Collaboration, with its “dead baby forest plotlogo (I think you had to be there, it was funny at the time), was established in the 1980s to comprehensively check results using databases of publications. This allows for systematic reviews and meta-analyses, and, forest plots! From these we can draw a conclusion based on all the evidence available on whether a treatment is effective, has no benefit, or is actively harmful. That allows us to make the best decisions, that is, based on all the information and not what might be a misleading subset of it.

Studies were also withheld regarding Edronax/reboxetine having no benefit or being worse than other available antidepressants. The German version of NICE (IQWiG) made Pfizer show all the data so that doctors could stop potentially harming patients by prescribing it. As a class of drug whose efficacy is constantly debated, a class I have tried myself (briefly and unsuccessfully) and a class many of my friends use, examples like these are particularly distressing.

The existing model that includes poorly designed trials also leads to the development of new, expensive drugs when older, cheap drugs work fine. Too many trials use the “last observation carried forward” method of recording data. So there’s the following scenario:

- people stop taking the drug as they found a lack of benefit or worse, intolerable side-effects

- in carrying forward their last observation of, say, level of pain – the benefit of the drug is massively overstated in the result.

It’s estimated that 50% of all trials are never published..! This can be described as research fraud, or at least misconduct. It is immoral and unethical. Yet no one seems to talk about it, none of the Royal Colleges have officially spoken out. Surely these kinds of groups should be spearheading this campaign?

What about the regulators? Well, they don’t get all the information either. They also have to make different kinds of decisions from doctors and patients. They still need all the data.

We need substandard treatment options. Some people cannot tolerate the gold standard, so they need alternatives. Regulators sometimes see black and white works/doesn’t work situations, and that’s not generally the case in medicine.

Now, the EMA rather than the MHRA approves UK medicines. Cochrane asked EMA for information on two weight loss drugs (Orlistat and one other) but they refused to provide it for 3 and a half years. They argued that it was “confidential information”, such as in the trial design (it wasn’t), that there was an administration burden involved (there wasn’t); patients were exploited for commercial gain. The EMA is now releasing more, but not enough.

£500m was spent on Tamiflu. £5 out of every £20 in the NHS’ drug budget. Roche are still holding some of the information on around half of the trials; they promised to produce it in December 2009 but we are still waiting for it.

GSK are similarly despicable and have had to cough up a $3bn fine (not a huge percentage of their profits, of course).

Apparently the abpi behave in a surprisingly similar way to homeopaths when they are criticised.

“Conflicts of interest are situations, not behaviours – judge people by their actions” – Ben

Is there a concerted campaign to change this? Not really, said Ben at the time – now there is! Patient groups need to write to Pharma companies. There’s a lack of leadership and poor reporting on the issue; MPs are ill-advised.

No one makes the challenge so people continue to deny the problem, because they can?

Questions

What can we do?

[Apart from signing the petition!] Doctors need to write to the Royal College(s)/BMA to complain about publication biases etc. – send any replies received over to Ben [and the campaign]. Patient groups should contact the relevant drug companies. Anyone can!

What about non-UK companies? … if a company is attacked on home ground, won’t they move?

Asked senior politicians about this. The abpi said prescriptions talks with the NHS drove down drug prices. The prospect of job losses is fine. What’s not fine is letting them withhold data “or jobs will go” – patients are harmed by this!

So what levers are there? NICE; they could not approve drugs until all data has been shared.

Can we at least get Europe to do this? Coalition pressure, Australia, New Zealand, Japan… The government can lobby colleagues coherently. No marketing without total results. Unknown results – how many deaths? New policies? Better decisions?

What’s a good response to alt-med fans and peddlers accusing of ‘conspiracy’?

It isn’t, it’s the inevitable behaviour of corporations running under incompetent regulatory frameworks. It’s rational. Imperfections – but people are stirring to improve EBM.

Quacks are thousands of times worse.

But if they can be allies, if they could help fix EBM problems..?

Quacks do provide interesting case studies and useful demonstrations of what EBM is because what they do is not.

Pharma companies do not respond to placebo, so we need to do something real. Antivax and quacks have poisoned the well here.

NB/ RandomiseMe should be up around April/May 2013. Random tests (not necessarily medical) to take part in.

PatientsLikeMe is useful for logging symptoms, side-effects etc.

Why isn’t the financial sector more concerned?

Generally it’s not a company value issue because consequences are miniscule (Tamiflu is still selling).

GSK fine didn’t affect their stocks, about 10% of their revenue?

Jan 2012 report showed 1/5 trials are put on clinicaltrials.gov, but no fines given.

Thus ends my patchy notes – finally, sign and share the petition!

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 disgrace 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??

Dave Gorman speaking

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“.

Dara speaking

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.

Brian speaking

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.

about to deliver the petition

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.

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.

Read the rest of this entry »

One Year On: Libel Reform Update

December 2nd 2010 at the Free Word Centre: an update on the progress of the Libel Reform

all-important refreshments

campaign.

Hosted by Jonathan Haewood of English Pen, John Kampfner of Index on Censorship and Tracey Brown of Sense About Science.

English pen have their photos from the evening on Flickr; I managed to avoid being in any of them this time!

From the literature distributed at the event:

The One Year On event follows weeks of further revelations of the impacts of the libel laws:

- Plastic surgeon Dr Dalia Nield was threatened with libel action by the manufacturer of a ‘Boob Job’ cream for saying she was concerned the product was potentially dangerous*

- A survey of bloggers and online forum hosts found that bloggers are particularly affected by the libel laws as they work without the support of a large company so suffer an inequality of arms, particularly where they are writing about companies, institutions and products.

- Yahoo!, AOL (UK), Mumsnet and the Internet Service Providers Association told Prime Minister David Cameron that the current laws make ISPs liable for content hosted by them and means material can get taken down in response to a threat when there may benothing defamatory about it.

* This is in reference to Rodial’s product, a cream called “Boob Job” – covered by Ben Goldacre, and we also mention it in Episode 7 of Super-Duper Woo-Fighting Duo!

Introduction

We were first assured that people’s counter-arguments have led to modification of positions and proposals within the campaign – differing interpretations have been taken on board and the aims of the campaign modified accordingly (in true skeptical fashion!).

It has sparked the first serious public discussion on libel in the UK; no insignificant achievement.

More MPs signed the libel reform EDM than any other in parliament. All parties made a commitment in their manifesto. A Libel reform bill has also come through the lords.

And, of course, Simon Singh won his appeal! Leading to the “Fair comment should be strengthened and clarified” resolution.

In addition, Jonathan has written:

In a year’s hard campaigning we’ve seen a lot of activity – but nothing has actually changed. We are now looking to the Government to produce a Bill that protects the public interest and recognises our changed media environment. We are commmitted to upholding free speech, reputation and access to justice – we just hope that the Government is too.

However, there have also been worrying trends. Scientists, publishers and bloggers are still  regularly being threatened with libel writs.

At the very least we can probably accept that everyone wants to:

- protect free speech

- recognise the importance of reputation

- maintain access to justice

Richard Allan

(Director of European policy, Facebook)

He states the importance of being able to talking with people as freely as possible, then mentioned the “Twitter bomb threat” (which prompted me to tut loudly; people need to stop calling it a ‘bomb hoax/threat’ because it wasn’t) – speech issues are on the agenda in both the public and political spheres.

In his view, the objective is: legal support for speech (as long as that speech isn’t illegal; i.e. recognise the existence and [lack of] implications of casual talk or ‘the Pub vs. the public) – let’s have a better environment.

They don’t want to have to respond to solicitors’ casual threats of libel. Instead:

- The complainant should go to the author first

- Obtain documents from court to say it’s a genuine complaint

Internet companies take content down first and ask questions later! (Once bitten…)

There needs to be a single publisher rule; a limitation of 1 year; long enough for someone to take action if it is in fact actionable.

Facebook is globally accessible but libel tourism isn’t acceptable.

We need to respect that people have views on things – they do and will continue to discuss them in public fora, including online.

Unless this is understood, it is simply “an accident waiting to happen” – will it take a few solicitors to pick it up and run action to have dramatic chill, before things change? Let’s get legislation now rather than fix it after the fact.

Emily Cleevely

(Head of Policy, Publishers’ Association)

Emily started by asserting the value of publishing and why it’s in the government’s interest to protect it, having generated £4bn revenue in the UK in 2009; up 2.6% in 2010 – in the current market. If we’re to get out of the recession, surely we should be supporting growing industries?

Is publishing the key? It also aids with social mobility e.g.  in the form public libraries.

Creativity should be protected – authors must have freedom of expression without great fear of libel action. Not just trials but also the threat of libel, the chill, that convinces too many that silence is a safer option.

Emily gave the example of Wayne Rooney’s book, which apparently had a lot of things taken out/changed. Not sure anyone was too impressed with this point, particularly Matt

The PA will continue to be active in politics and media regarding Libel Reform.

Most interestingly, Emily gave some stats from a survey conducted in October this year regarding the effects of libel on PA members (which will be published in a January 2011 report): 100% (of the 65% total membership that participated in the study) said they had modified content or language in a book prior to publication to avoid the risks presented by current UK libel laws.

Richard Mollet, CEO of the PA, said:

The Publishers Association has been campaigning for libel reform for many years and is concerned about the chilling effect which the current law has on freedom of expression. The results from our survey demonstrate that libel law as it currently stands is a huge burden to many publishers in the UK and may act as an obstacle to growth, innovation and freedom of expression within the sector.

Tom McNally

(Minister of State, Minister of Justice)

[Most of the time he was speaking, I kept wondering what he was fiddling with in his jacket pocket. Anyone else??]

Having only been a minister for 6 months, McNally wanted to quote the ‘Dick’ Crossman diary (1964) on ministerial duties [roughly, as I couldn’t quite write fast enough!]:

One of the curious features is that one cannot distinguish day from day or night from night

[I think that’s the case with plenty of jobs, to be honest!]

He did say we “should have a Draft Bill in Spring” (which means sometime before June 1st 2011)

Going from the Lords to legislation is a slow process and the importance of “future-proofing” whatever we do was emphasised.

In my notes I then have something about ‘the next parliament March 2012′ – even after reading some Wiki on our parliament, I don’t know what he/I meant by this (please comment if your memory and political/legal understanding is better! This is not difficult to achieve, mind).

McNally implored us to continue:

Don’t stop! … This is the end of the beginning for your campaign

The Draft Bill is a rough outline of what the government will commit to. When it comes out, we may not like phrasing and bits might be missing..!

He then addressed Simon Singh:

My son is 17 and doing Maths, Physics and Chemistry in St. Albans – your ordeal was very rough but you’re a hero to young scientists and have inspired a lot of young people in science

Which, I think, we all very much agree with.

Having read Douglas Hurd‘s paper on communications, focussing on “Quality, Diversity and Choice” – he wants to ensure we have that in our media, unrestricted by the libel laws.

Questions

Q (DAG): Do the activists only come in after bill publication – can’t we input now? [Tom A: wait a bit!] You said ‘hopefully’ there will be a slot in 2011/2012 – does that mean there might not be one? [Tom A: No minister can commit to anything in the preceeding financial year]

Q: Have you considered vulnerable writers (like the disabled) and the use of sensitive/offensive terms – legislating on which are acceptable, and how does one defend one’s reputation? [Tom A: regarding hate crimes, the issue hasn’t come into libel reform yet] – I think the general opinion here was that this was a bit of an irrelevant/off-the-mark question.

Q: (Simon) – Interview in Aus with Questions: regarding homeopathy – threat of London libel. Someone blogged anyway. People someone quoted have asked to be anonymous for fear of libel. [Tom A: Contrasting legal advice: is the Master of Rolls looking?] From the audience: “At every stage…” – some ramble that didn’t mean a lot, from where I was sitting!

Comment: (Síle Lane) – from a Sense About Science survey, of the editors of scientific journals (in all subject areas):

- 32% have been threatened with libel action

- 44% have asked authors to modify articles

- 38% have refused to publish due to fear.

Tom A: We’ll try! We can’t go into detail; we need laws to protect science discussion and criticism. Legislation needs to be right, not flawed and open to criticism. Then a comment about public opinion/support that I missed – perhaps, the public generally supports making sure scientific claims & criticisms can’t be silenced by legal threats? I don’t know if there have been any surveys on this.

Q (Evan Harris): A claimant lawyer can make their case (and have it rejected!) –  we need to create a public interest defence; incorporating a ‘threshhold’ of damage caused to reputation (in this country), given what is published abroad. [Tom A: Something about the Lester bill and 2 sides interacting, that I missed. Plus, there’s another chill for people with ‘media intrusion’, who are met with “don’t like it? See you in court”]

Response (Evan): Individuals need to be able to sue. Companies, less so. [A: this must be looked at.]

Comment (Nigel Tait – Carter Ruck (!) ): ‘Please don’t worry about us lawyers!’ – because they’ll keep making money regardless, basically. Which is true.

Q: (Tracey Brown) – Is it a good thing (economically) that London is a litigation centre? There are other ways though;  so that we would not be blocking world discussion, but leading it.

Q: (Matt Flaherty) – The recent Supreme Court case that replaced “fair comment” with “honest comment” – how big a deal is that?

- we didn’t get an answer to Matt’s question, sadly, even though it was arguably the best one (but perhaps we’re just biased ‘cos we love Matt. Still, it’s a shame no one offered a response).

Q: I want to bring up the elephant in the room, or perhaps the country; I’m sympathetic to PA and Facebook but what about people exposing military abuse; will you allow Assange to stay in the UK? – people chuckled at this a bit.

Richard makes a joke and someone says “Assange is not a subject for mirth”.

(Richard): Sorry, World insanity causes me to resort to black humour! When you hear of people ordering assassinations for something the person has said, that’s just insane.

A (Tom): I Can’t answer this! Ask the attorney general. Q: What’s your view of the leaks? Patience! – is all I’ve got in response to that, but I can’t remember if any more was said.

Comment: The burden of proof is not actually biased to the claimant (I had a semi-drunk argument/discussion about this – the unfairness of the law re: the accused who makes the libellous comment – in the old London SitP pub, then about 2 weeks later I bumped into the guy at Westminster Skeptics and he said I was right and he’d been talking rubbish. Always nice to know!).

Q: One of the main reasons for libel tourism is that our lawyers charge 40-50x fees! No one can afford this! Would the lawyers really want to remove this source of income?

A (Joanne Cash): – Yes we will go against our paychecks! “If you need any help, you know where I am!”

Comment (Emily): People ask about the value of science vs. creative works and biographies. Science must be critiqued. Perhaps there should be a seperate – legal, if I recall -category for science?

Audacity! We use that for Superwooduo

Hey, Audacity! We use that for SDWFD(wc)

Personally I don’t think I agree with that. If you start treating science as a really special case, this could potentially damage an already shaky relationship with the layperson. Though evidence-driven criticism is especially vital in science and particularly medicine, I don’t see why such criticism should be actively discouraged (with such great effect as the current libel law has) in any field.

Closing comments

Tracey: When we started, we heard “don’t bother” because: it’s too complicated; you’re small; the government is uninterested.

Remember this is as much about the public right to read as for people to speak. Uncertainty leads to debate and often uncovering the truth.

For example, take the case of Peter Wilmshurst as one that gives a simple perspective (we  want the public to be made aware of things that might be dangerous, rather than people deciding not to speak out to protect others, for fear of losing their house, their job, their livelihood).

When small people say things to power sometimes things happen

I’m sure many of us still like to think that could be true.

Protesting the Pope

A fantastic day! Read the official campaign’s page for links to speeches etc.

from @toxicpath

The sun shone, the peace was kept and we all had a good sing & shout. Getting people to sing along to ‘Every Sperm is Sacred’ whilst we played our kazoos and wotnot was, so to speak, divine.

For a feel, have a look at this video diary, listen to some interesting PodDelusion audio (also the iPadio snippets at the end) and here’s my Flickr set.

What an amazing bunch of people – seriously, I don’t gush about the wonderful nature of human beings very often but having been surrounded by ~12,000 (according to the Met) lovely individuals, today I feel I have to.

Atheists, humanists, catholics, muslims, hindus, agnostics – just about all faiths and none, I reckon (mostly none, of course, but plenty of decent ‘believers’ also).

The only thing that shocked me was some of the pro-pope lot shortly after the march started. At first we couldn’t really hear what they were saying, it was just to the tune of various football chants. But then it became clear.

There the dead go! *clapclap clap clap clap* There the dead go!!

I really couldn’t believe that children and adults alike were standing there shouting that at us. It was truly horrible, many of us looked at each other with disbelief, but we didn’t have much to return except the peace-Vs and a bit of “use condoms!”.

from Leah van Zyl

That bit of unpleasantness aside, we had some chants – a few were amusing

from @edforchoice

Get your rosaries off my ovaries!

Hands off my eggs, Benedict!

And some more standard, to-the-point

Gay/trans/women’s/children’s rights are human rights!

No state visit!

We don’t want your homophobia, nope to the pope!

Faith schools indoctrinate!

See some (minimal) BBC coverage here – can’t believe I missed Ian McKellen!!

The speakers were excellent, when we finally arrived at Downing Street. All the unedited audio is here on PodDelusion.

BHA chief exec Andrew Copson was surprised and very pleased with the turnout (rightly so!).

Also from Leah – brilliant!

Some very moving speeches from survivors of childhood abuse at the hands of the clergy (Sue Cox for example – see/hear us ‘singing’ at the beginning too!). They expressed their thanks for everyone showing up and making them realise how many people do care about them, having been told for so many years that they should keep quiet, then that they were lying.

Peter Tatchell did his thing and spelled out why we were all there.

Richard Dawkins got big cheers from the crowd and was actually rather amusing! Link to best Youtube vid so far.

Hear Johann Hari’s speech here.

Ben Goldacre’s usual sobering AIDS-kills-2 million-every-year stat had all the blown-up condoms bobbing around above the crowd. Listen to a bit  o’ Ben here.

Also on the stage was Geoffrey Robertson, author of The Case of the Pope – an exposé of all the monstrous activity he’s uncovered in the Catholic church.

One of the most horrific things was to hear of  the many women in Brazil and other countries turned straight to the authorities when they arrive at hospitals seriously injured after enduring a backstreet abortion out of desperation. Instantly criminalised due to draconian laws based on religious beliefs, stripping them of their rights; reproductive rights and basic human rights.

Father Bernard Lynch told of his anguish, witnissing fellow gay Catholics losing hope and dying from AIDS following Benedict’s vile words and policies.

Maryam Namazie spoke for the One Law For All campaign and the crowd voiced their support for Sakineh Mohammadi Ashtiani, who may be stoned due to Iran’s oppressive islamic regime.

After it all finished, the crowds dispersed quickly and quietly, the roadsweepers did a great job clearing up (but most people I saw were carefully keeping their litter to themselves or finding a bin – not easy in London!) after us and we went to sit in a pub.

from @brumplum

It was fantastic to meet some Facebook friends in person, to sing with the BHA choir (thanks to everyone who joined in!!), bump into old friends and make new ones.

I had a great day and I hope we’ve made a bit of a difference somehow.

——————————————————————————–

Audio

Here are the PodDelusion snippets from James & Liz:

Belivers And Protesters http://ipad.io/OUQ (and James’ experience of trying to get some interviews from pope tourists – not too good)

Speakin To John, Who’s Going To See The Pope http://ipad.io/OUT

Finally Found Some Protesters At #protestthepope http://ipad.io/OUY (featuring yours truly! Eating my breakfast/lunch)

Chanting http://ipad.io/OUt

Another Interview http://ipad.io/OV1

Signs And Banners http://ipad.io/OV9

Shame On The Pope! http://ipad.io/OVO

Aftermath (recorded Saturday) http://ipad.io/OaE

Video

My recordings:

My new favourite video here.

Also search ‘pope’ on John’s youtube channel for a few excellent videos http://www.youtube.com/user/johnjrp01

Media

Honestly we’re all quite pissed off about this, I think. The estimates for attending are consistently under-reported, many of the interviews and footage taken seem not to have materialised… it’s all a bit fishy, but also unsurprising I suppose.

Here’s a good riposte to tall the people saying the protest was anti-catholic (who have missed the point entirely). The NSS has done a nice write-up with photos.

Video from ITN, not sure what actually made it on the TV news though. Press Association coverage.

New York Times article isn’t too bad. The BBC coverage has been fairly predictably rubbish so far.

http://www.bbc.co.uk/news/uk-11358115

http://www.bbc.co.uk/news/uk-11355258

Photos

Buzzfeed’s funniest signs!

See my friend Delia’s blog, Tanya’s photo blog, Hampshire Skeptics, Jonathan Warren‘s site and the BHA’s facebook album for some great pics.

The BHA has also set up a Flickr pool for the event!

On Flickr, fab pics from: Joe, Colin Grey, maddington, Stormy little teacup, pug50, Cat Burton, Stephen Darlington, Loz, Zeitgeist images, Greg Gerrard, Andrew Brown.


#Bleachgate: The Plot Thickens

Rhys is becoming a skeptical celebrity! His Twitter following is increasing exponentially and he’s off doing interviews for the likes of Pod Delusion [Edit: do have a listen, great episode!] and Skepchick. He’s written up the events himself on his blog. Joely has put her thoughts down, on why people are sucked in by ‘miracle cures’.

Rhys has assembled a small taskforce to document all the people selling  MMS, contacted the FDA regarding Mr D Bergy, has spoken to BBC Wales and is generally making excellent use of his holiday time. Kudos. Edit: now in line to take part in a Crohn’s/MMS documentary with a Yorkshire production company!

But now, something I couldn’t leave until tomorrow.

A Horror Movie

I just had to write about this video I’ve been watching; an interview with Jim Humble (reckon that’s his real name??) on the discovery, mechanism and results of MMS. Basically he seems to think he’s a miracle healer and that this stuff cures everything – and I mean everything.

Fortunately he talks slowly and I type very fast so it’s not taking too long to transcribe – most of it is terrifying and of highly dubious legality, I’d say. I’ve not used the quote format because it’s almost all his words; my commentary in italics.

Discovery

After going through his past life as a gold prospector and other random things, he starts talking about how he gave glasses of water with his ‘purification drops’ to people suffering from malaria in Africa and watched them spring up and start laughing about how bad they were feeling before. From about 12:00 onwards:

They were willing to try anything

Well exactly, sir. Desperate people are often open to anything.

He says the Guyanan government stopped him because US pharma companies threatened that they’d stop sending drugs if he kept ‘curing people with malaria’ and they needed their drugs in the hospitals. The usual ‘big pharma is witholding your cures!’ stuff.

I realised I was using stabilised oxygen and I started working with it.

Chlorine dioxide is what’s available in stabilised oxygen [stuff sold in health food stores]

It took me a year to figure it out, any good chemist probably would have figured it out in a day… a lot of chemistry I really didn’t understand [NO, surely not?!]

You simply add some vinegar or lemon juice and the acid releases the chlorine dioxide and that is what does the work… not the same as chlorine… it doesn’t create the chemicals that chlorine creates in the body or in water purification systems… carcinogenic chemicals, but chlorine dioxide does not.

He then uses some fallacy (possibly of composition, not sure) about how salt (sodium chloride),  which is harmless (although it isn’t always!), is very different from chlorine, therefore chlorine dioxide is harmless too.

Then he rambles about how it’s a better oxidant than Hydrogen Peroxide!! Well, anyone who’s bleached their hair will know that you certainly don’t drink that stuff.

It only attacks the pathogens! … There are no side-effects… after a few hours it turns into such a small amount of chloride (that’s table salt)… it leaves nothing behind to cause side-effects

Mechanism?

Interviewer: how does it single out pathogens in the body?

Pathogens are anaerobic… the anaerobic micro-organisms are the ones that do the damage. Oxygen-using bacteria are much stronger than disease-causing anaerobic micro-organisms so they cause all the trouble and are weak. [This is, as you may realise, rubbish]

Most people have been out in the woods and they’ve seen fungus growing on the trees. That’s anaerobic; you can walk up and knock it off because it’s very weak!

Er, what? 1. Fungal blooms don’t exclusively respire anaerobically. 2. You can knock them off because you’re many times their size and strength. Same reason you can push a kid off a swing, doesn’t mean they’re pathogenic!

It’s the same way in your body.

When you put chlorine dioxide in the body, it’s a weak oxidiser so it can single out the pathogens – it only has enough power to oxidise the pathogens.

Although it’s much weaker than ozone and H2O2, it has a much greater capacity; it’ll oxidise 2 or 2.5x as much as ozone but it can’t oxidise as many different things. Those things that it does oxidise, it does so with a great deal of power. [Eh?]

Chlorine dioxide is an explosive in large quantities… The way it kills a pathogen is it blows a hole in its skin. [NB/ bacteria do not, of course, have skin]

The normal antibiotic that you take, that antibiotic has to be built for that particular pathogen because it has to go inside and make the nuculeus [sic] quit working properly [That is not generally how antibiotics work, since bacteria don’t have nuclei – the ones that cause human diseases don’t, anyway].

But ClO2 blows a hole in the side, there’s no possibility of any pathogen ever building a resistance.

It kills viruses in a slightly different way. Instead of trying to kill the nucleus of the virus [a virus does not have a nucleus], it prevents the formation of the virus proteins resulting in the destruction of the virus… it also kills fungus and parasites.

Now for the SCARY bit [Edit: or so I thought; it gets much worse]

Contemptible Claims

1. Malaria

For example, malaria is caused by a parasite and normally a person with malaria given MMS will be well in 4 hours.

I’ve treated 2000 people personally and the people I’ve trained have treated over 100,000 people and in that 100,000 normally 400 people would die.

There were no deaths reported in that 100,000 at all. It really works well with malaria and a lot of other parasites, even worms.

Interviewer: You say in the trials, people had treated 100,000 people, in Africa?

Yes, in Kenya and Uganda. Then there was [sic] guys who I’d give the material and MMS to and they went to Sierra Leone and quite a few people in Tanzania were treated. I treated a number in Malawi. (Chuckle) All these countries are in Africa if you don’t recognise them.

Interviewer: What happens when word starts to spread?

A lot of other people come in but unfortunately things happen that sort of slow things down. A couple of missionaries decided I was evil and told all the missionaries in the area so that sort of slowed things down. They quit using the MMS. People didn’t get treated.

2. Miracle Healing

Interviewer: Because you were a threat to the power struggle?

Maybe. One woman came to me with pain in her hands. She put her hand on mine and I said ‘can you feel my fingers?’… ‘oh! the pain’s going away, I can feel the tingling’. A missionary came in and said stop it, stop it… she decided I was evil.

I developed a technique for healing by touch. The basic theory is that the brain controls all the healing in your body so if you can increase the communication between the brain and the area that’s bad, it will heal faster. In minutes sometimes… a little bit like reiki but not really!

—-

Interviewer: What response have you had from the orthodox medical establishment?

It depends on where you’re at. In the US, the medical establishment is pretty much against MMS.

I had a millionaire who was willing to put up enough money to treat the entire country of Haiti. So I went there with the idea of doing that and I tried to communicate with people there and I talked to all of the missionaries there and every one of them was connected with a doctor in the US and he said ‘don’t have anything to do with it’ – quite a few were enthused but when their doctor told them not to…

The medical establishment in the last few years have not been very receptive.

I’m in Mexico now and there the doctors have been helping me and a non-profit civil association was formed. A number of doctors have put their names to it.

Ready for it?

3. AIDS and CANCER

We’ve started doing clinical trials for AIDS, Hepatitis C and Cancer and those trials have been going pretty good [sic] and we have a guy who’s head of the prison system there – he’s also helping us. And the local hospital has agreed to give us 300 blood tests for free.

We’ve been out to treat the local Indians and tribes out there. There’s a lot of bottles of MMS being sold in the US too – at least 15,000 a month.

Say it again?

Interviewer: Are you allowed to say here on camera that MMS will cure cancer? [36:20]

Sure! (Laugh) I can say it – MMS will cure cancer.

Actually, I think you’ll find that you cannot. Follow-up in progress.

Interviewer: What statistics have you got on that?

In my opinion, you know, I’ve treated a few hundred people in Mexico, some were cancer patients. I’ve treated, over the telephone when people call me, at least 2000 people over the telephone. I’ve probably treated by e-mail another 4000 people and I have a lot of stories of people who have been cured of cancer.

There was a girl down in Australia who had lung cancer. The doctor said ‘you’re gonna die in about 2 weeks’. She wasn’t able to get out of bed and so her doctor heard of MMS, brought it to her and she was of course willing to take it and in 11 days she was up walking around and in 15 days she got in her car and drove down the lake and walked around the small lake. Before the month was out she was back teaching school. She wasn’t completely cured then but since then she has been.

Just the other day my friend who works with me there in Mexico, his uncle got cancer, got worse and worse… it was pancreatic cancer and he said ‘I wanna go treat my uncle!’ – we said ‘sure!’ – we flew to another city, he was laying in bed totally depressed. He said ‘here I’m gonna give you some stuff, drink it’ – he did the whole protocol that we have, which is putting the MMS on the outside of the skin and several other things and by the next morning he got up out of bed and walked around a bit.

This is utterly shocking to me. Pancreatic cancer is still one of the deadliest cancers around. It is no laughing matter, only 2-5% of patients survive 2 years after diagnosis. This is an horrific claim to make.

By the third day he quit taking the pain tablets. It almost always happens with cancer patients. By the end of the week he was talking about going back to work. When I left Mexico he wasn’t totally cured but he was up living his life again at least.

Misunderstanding Cancer

Interviewer: Because it heads straight for anything that’s anaerobic and cancer cells are anaerobic?

There’s more to it than that with cancer. We put it on the skin and we use DMSO, a material that soaks into the skin [yeah and you don’t want that to happen; we use it in the lab, never ever without gloves! Think he’s cherry-picked from wiki, read from here for example], used by people that treat horses and other animals and people all over the world; if you mix it with MMS, it soaks into the skin and takes the MMS into the skin too.

So when it takes the MMS into the skin it heads directly for the cancer and it soaks into the cancer too. Instead of attacking the cancerous cells, the weak cancer cells, because it’s DMSO it soaks into the cell and it kills the little bug that’s inside the cell that’s causing the cancer and it’s causing the cell to be weak and cancerous.

CANCER IS NOT CAUSED BY ‘BUGS’ LIVING INSIDE CELLS – cancerous cells are cells growing out of control. They are not ‘possessed’ by bacteria or anything else. This is a patent lie, a complete misunderstanding of the biology of cancer and to claim that killing some imaginary cellular parasite with magic bleach will cure someone of cancer is beyond my words.

When you kill that little bug, the cell becomes healthy again so you no longer have to kill the cell. So the whole theory behind using MMS to kill cancer; is we use it 3 or 4 different ways all on the same guy, because we want to have as much MMS in that person’s body as possible. We want to make the environment of the body totally reject the cancer. The more we can get into the body, the more likely it will kill the cancer.

But we’re limited because we can’t make the person sick. We gotta give him just enough that he don’t get sick but he’s on the edge of getting sick! So we’ve got to keep him just on the very edge and therefore it’s pretty intense for cancer, he needs to take it 4/5 times a day, small amounts instead of a big batch.

Interviewer: What does ‘small amounts’ mean?

3-6 drops of MMS, of course you’ve got to activate it too, in small amounts. The MMS is put on the outside of the body, affects the body in a different way, it doesn’t cause um, uh, a Hexeimer… Herzeimer reaction [sic - I don’t know what he’s talking about] (being the reaction that’s caused by cells dying) because it goes in and it kills the bug that’s inside the cancerous cells and it kills the cancer. So it uh, we’re, been having a lot of luck with cancer and almost every other disease you can imagine.

Marketing & Poor Advice

Interviewer: It sounds like there will be people who are paying very close attention to what you’re staying because they may be thinking ‘this is my last hope‘. Do they buy a bottle ans start taking it, do they need to consult a practitioner? Are there different protocols for different types of cancer?

Some people can self-medicate. Boy, medical doctors hate that! It’s going to keep them from getting a few bucks. But it’s a good thing, people taking responsibility for themselves. If you can find someone who has experience, that’s good, get going. I have all the data on my websites, and the protocols tell you how to do it – the cancer and other things as well.

Another tired argument; doctors don’t want you to get better because it damages their pay-check!!1! Well guess what, doctors are almost universally less misanthropic than this bloke.

The latest one is a protocol for people who have life-threatening diseases and… we’re getting the best results for, life-threatening diseases like cancer.

There are a lot of things you don’t need to go that intense with, you can take it much easier. Normally, I have all those protocols on and a lot of other data too.

I have what’s called an MMS Answer Site with more than 800 questions and answers I’ve given people over the last year. Those questions are cross-referenced in a number of different ways so you can look up almost anything; pancreas, colon or a number of other things.

The Motive

Interviewer: So what you want is to give people the power to take their own health welfare back into their own hands away from the professionals?

Exactly, exactly. The more someone takes responsibility for his own health, the more likely he’s going to be happy and stay alive!

There’s MORE?

Interviewer: So we’re talking malaria, AIDS, cancer, what else?

Flu, colds, all types of diseases of the mouth.

Um, uh… most people find that even if they think they have healthy mouths, if they will brush with MMS twice a day, they’ll find that their gums will get harder, their teeth will get more solidly in place, their teeth will get wider [?!], the MMS kills any bacteria that’s on the teeth and helps enamel remain solid and build back to a certain extent because if you kill the bacteria, the enamel can improve to a certain extent.

All kinds of people who’ve had terrible, terrible diseases of the mouth – including abscess teeth! For a long time I was pretty much convinced that if a tooth abscessed from the inside, you couldn’t get MMS into it and therefore you couldn’t cure it if you couldn’t get it inside.

One guy said ‘hey I’m gonna try that DMSO!’ so he put it in and brushed with a real soft toothbrush for a while, with the combination just brushing it – in about 2 days, the abscess in his tooth went away. That’s a total impossibility, but it worked! So it does really great things with the mouth.

I’ve had lots and lots of people call me and tell me that their mouth was in terrible shape and tell me how it’d improved to normal or even better than what you’d consider normal.

Home-run: TB and H1N1 flu

Interviewer: There are 2 modern-day plagues that could spread. One is TB and the other is avian flu. Would you have reason to suspect that MMS could work against both of these?

I sure would.

The avian flu of course, although there’s been and entire multibillions [sic] of people on this earth, there’s only been 300 cases of avian flu and those guys that got that was in places it was highly succeptible [sic] to it, the chances of it ever happening is very very slim. Although, our president Bush thinks, has been talking about how he expects it to happen and, y’know… in the drug cartels they’re talking about how it’s going to be, it’s just gonna happen sooner or later. They just don’t know how soon but they know it will.

Note that ridiculously emotive choice of vocab there.

Yes, some people think it’s been weaponised but I think that the flu that’s been most dangerous is the 1917 flu, it killed 15 million people. They reconstructed it from people who were buried in ice in Alaska…

Read what actually happened re: the 1918 flu on wiki for starters; I did a virology module at university in which Spanish Flu was covered. The viral genome was sequenced using samples from the victims buried in permafrost, it was not used to infect people.

From the sequence, its origins were pieced together; flu virus genomes are mix-and-match; the bits get shuffled around if there are two virus strains in one organism at a time, and the consensus was that different bird viruses infecting pigs resulted in a hybrid virus that infected people and then spread directly from person-to-person; the transition feared of the latest H1N1 resurgence.

I think MMS kills any flu that I’ve seen so far and it’s just a pathogen so it should be able to kill that flu as well. the best way is to keep a bottle of MMS on your shelf. [Handy for his bank account, no?]

Interviewer: Is there anything you can say about this yourself? This started in Guyana when? (John: In 1997 so 10 years ago now) It’s now a worldwide phenomenon, on every internet forum… the alternative health community is abuzz with this. Where’s it going to go, what are your personal plans?

I’d like to start in Africa and take one single country and just cure all the malaria in that one country and we’ll get a lot of the AIDS while we’re at it. Of course it’s a much more complex disease and much harder to handle than malaria but I think we have some protocol, ways of using MMS that will probably work on AIDS.

Interviewer: Do you have a country in mind?

Probably Malawi, it may not be that, but it’d be a good one because I talked to all the people in the government there. They were all very helpful, they all were happy to see me, happy for me to be treating their people.

There was no governmental problems at all – they had a malaria department in the government and that department was happy to work with me so I’d like to go somewhere, I’d like to go there just because it would be easy to get things going without a lot of uh, of getting permission and problems, that would be the main thing.

Peer Review??

Interviewer: Is there any possibility that you could get scientific studies written up in the scientific journals?

Yes there’s a possibility but I discourage that! I’ve had chances – people have asked me if I wanted to do that and I have discouraged it because we have been a grass-roots movement from the very beginning. We’ve been very successful in being a grass-roots movement and when I say grass-roots I mean below the governments’ radar. They haven’t been aware of us.

Grass-roots seems to be his favourite altmed community-friendly buzzword.

I had one of my friends check with the FDA the other day, he went in and went to the third man in control in the FDA and asked him about MMS – what do they think about it? The guy said “well that’s just crap, we don’t worry about things like that. We have these multi-million dollar corporations that are furnishing [sic] herbs that are replacing some of the drugs and we have, we have a lot of, we don’t have enough money to control them” he said, “why are we gonna worry about some guy down in the street selling MMS!”

So they aren’t aware of what MMS will do, aren’t aware of what’s happening. I want to leave it that way.

Convenient. So, rather than tell the world you have a truly miracle cure that could potentially save millions of lives, you’ll not bother with bringing in the scientists to verify that because the government wouldn’t like it. How very convenient for your business.

I don’t want the governments and the various different drug companies finding out about it. I’ve had chances to go in national newspapers and one or two chances to go on national TV and I’ve always rejected it, although I’m happy to go on the internet and I’ve had a lot of different internet attention.

I didn’t wanna get it spread out so much that the government’s gonna get their hand in it – because you know what they do, they stop, they stop whatever they can. So I’ve been avoiding that.

Eventually it’s gonna come, though, eventually the news is gonna get out, but I’m gonna wait as long as I can on that.

I think, we’re going to be doing our best, Jim.

Anecdotes ‘R’ Us

Interviewer: You’ve heard one or two stories of people who come up against the powers that be and suffered a little bit for that haven’t you?

One guy I know pretty well, was selling Assam [tea?!] that affected cancer and actually is called, an Indian herb and has been sold for 70 years. The lady selling it has had about 3000 letters from people who’d been cured of cancer. He was selling it on the internet.

I’ve left his gender disagreements in, he didn’t seem to know what he was talking about.

As soon as the FDA heard about it they confiscated his house and his car and his bank account and everything! They put him in jail and kept him from talking to his lawyer by moving him from jail to jail. They finally charged him after 6 months and when he said ‘not guilty’ and the judge says ‘wait a minute, let’s go to my chambers’. He said ‘you got a choice. Either you plead guilty and go to jail for 3 years or I’ll make sure you go to jail for 20 years’. His lawyer wasn’t there and he didn’t know what to do so he pleaded guilty and went to jail for 3 years. He got out of jail a couple of years ago and now he’s down in South America, he doesn’t want anything more to do with the US.

I had another friend who’s become a friend because he knows what I’m doing. He was in Africa curing malaria and people representatives from the drug companies told him to stop and he wasn’t gonna stop, he was gonna continue to cure malaria. One night when he went to his hotel room and he opened the door – a bomb went off and blew both his legs off, didn’t kill him. He’s in California now, he’s in a wheelchair.

That’s just 2 people I know personally.

A lot of the older guys; back in 1917 a guy named Coke [?] cured cancer; his material was sold to many hundreds of doctors and more 100,000 people were cured of cancer before the FDA finally stopped him. I could go on, there’s a lot of other stories

Later on in the 1930s, Rithe [?], his equipment and things cured another 100,000 people  of cancer [he loves that number] – the FDA stopped him, burned all his books and laboratory equipment. It’s burned many things many times, the DMSO book was burnt! They burnt a lot of books. [He kept saying burnt books, over and over.]

You gotta stay out of the hands of the um, uh, drug companies. And of course the drug companies run the FDA! In case you don’t know how that goes, the executives from the drug companies take a sebbatical, take a leave from their drug company and they go over and be the guy that runs the FDA for a year. So the FDA in the US is run by the drug companies, and (chuckle) it’s ridiculous! And they have stopped everything that cures cancer, and they convince the people (which seems to be easy to convince) that these people who actually have cancer cures are charlatans and bad guys.

I’ve had 3 or 4 friends who died of cancer [couldn’t have cured them then?] and said ‘well I’m not gonna go to those quacks!’ and actually the medical people are the real quacks, they’re the ones that’s killing everybody! That’s the way it exist now and it’s a real shame.

Hiding Out

Interviewer: Have you had any threats against you?

Not yet, but I live in Mexico just in case! I’m paranoid so I keep under the radar. I think I probably have another year or 2 before the FDA says ‘uh-oh, this stuff is starting to reduce the income of the drug companies’ that’s the thing, when the money starts decreasing, when it looks like the MMS is starting to replace some of the drugs then that’s what’s gonna really make them mad.

Business Plan

Interviewer: So your goal is to get as much of this out there as fast as possible before they realise what’s happening?

Yep, get as many people using it as possible. My book tells you how to make it, it even tells you how to manufacture it in your kitchen. So you can buy the book and set it up yourself and furnish it to your neighbours or family.

Interviewer: In your book you’ve got instructions on how to be completely self-sufficient with MMS?

Yep, step-by-step procedure to make a few bottles for yourself, and to make hundreds of thousands to be sold.

A $20 bottle can last you, personally, if you want to take a maintenance dose every day, a $20 bottle lasts about a year and a half – for the whole family about 3-5 months.

I don’t sell it myself except I’m starting to in Mexico but for the last 10 years I don’t sell it myself, I give bottles away, let other people sell it. Everybody kept the price down. We want to keep the price down so everyone can afford it. We’re all selling it for the same price, $20 a bottle – I don’t care if it’s Germany, South Africa, Australia… [long list]

That’s less than a penny a dose. You can cure a case of malaria for 5 cents. Even the people in Africa can afford that. When we go we ain’t gonna charge them that much, we’re gonna do it for free at first but they could afford it if they have to.

Read on for the last 5 minutes of weird, worrying stuff.

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