Burzynski on Panorama: More details ahead of tonight’s airing.

So, Panorama airs tonight. It’s very hard in a 30 minute program to go into all the detail that’s required to fully understand why there are so many questions unanswered about treatment protocols and efficacy at The Burzynski Clinic. Here I’ve detailed what you can expect to see and provided links to get greater detail that maybe lacking from the show.

Luna and Amelia

In tonight’s show you will almost certainly see two patients featured fairly heavily. They are Amelia Saunders and Luna Petagine. You’ll see the heartbreaking choices that parents sometimes have to make to do whatever they can to save their wonderful children. You will see both children sadly pass away.

It’s at great personal discomfort that I write this. Nothing beginning to touch the scale of Amelia’s and Luna’s parents, but it is so very important that you understand the full details of both these tragic stories.

The Other Burzynski Patient Group page, in anticipation of tonight’s Panorama, have written up both these stories. They are stories of the worst kind of heartbreak and sorrow, but the full detail must be understood in order to see why The Burzynski Clinic aren’t selling hope, they’re selling false hope.

Amelia’s Story can be read here. It’s a long post because her parents documented many of the ins and outs in great detail. See how they are told that no change in tumour size is positive for months and that the clinics interpretation of Amelia getting worse, is that she’s getting better. Again, sadly, a story that other patients have heard going back to at least 1994.

Luna’s story can be read here. It’s heartbreaking, but it covers important points that the show may not cover.

I implore you to read them and write about them and tweet about them.

Burzynski is interviewed

Yep. The man himself, after many delays, agreed to be interviewed for the show. A section, if not the whole interview is available to view, right now, on the BBC website.

Listen to him say that he can’t produce details of the trials. This is a lie. He just can’t advertise the results, which is a very different matter. It’s also worth remembering that these new results, so soon to be published, follow a pattern of unfinished and unpublished trails. Details of which can be found going back over 20 years on the the US government’s CinicalTrials.gov website. He is treating people without evidence that Antineoplastons work. For 35 years, no less.

Wayne Merritt

I know that Wayne was interviewed for the show. I know that he and his charming wife Lisa, who I’ve had the pleasure of emailing with and sharing details of Wayne and Lisa’s struggles with cancer, spoke about the legal threats they received from the clinic. Wayne and Lisa run the Burzynski Scam website, detailing their dealings with the clinic. It drew the attentions of Marc Stephens, a man hired by the clinic to get as much of the adverse press removed from the Internet as he could. I don’t know that the production team will have time to include details about Marc Stephens.

Marc Stephens, who is not a lawyer, made legal threats against the Merritt’s and many others that speak highly to the lengths the clinic are willing to go to in order to remove any negative press. It was a tactic that backfired dramatically.

Rhys Morgan

I also suggest you read the story of Rhys Morgan, a school boy at the time. Read how Marc sent Rhys a picture of his house and made pseudo-legal threats to silence him. Rhys was initially interviewed for the show, but was cut so they could focus more on the science.

Panorama is the start

As I said above, Panorama is a starting point. The British public and the rest of the world need to see Burzynski for what he really is. He offers a treatment, but provides no real evidence that it works. He claims ANP can cure cancer, yet most people treated don’t survive beyond the expected mean. He time and time again says “wait and see”. We wait, but never see. 35 years and 61 registered clinical trails, the world has waited. We still don’t see.

The only real “hope” offered is that people become better informed about this “cure for cancer”. That when the name Burzynski is mentioned, while desperately looking for an alternative, people know that he offers only expensive false hope and deception and nothing more.

If you want more reading, listening and contact details, I wrote briefly about this a few days ago. Details can be found here.

Replying to trolls – A moment of weakness!

Every week this site receives one or two vacuous emails, often from supporters of homeopathy, sometimes just random hate or misunderstanding. I never reply to the hate or homeopaths. I see very little value in wasting my time. I don’t usually share them with Alex or Shaun, either. Well, this one I did:

On 29 May 2013, at 19:07, “hopper” wrote:

Name: hopper
Email:
Comment: Hi there!

Since this is the website about skepticism, i will use this tool of inference.

1. the website is run by 3 guys which are in no way authority of science. First one is IT professsional(can they comment on science?)

2. second one is a dentist( a modern mason, not a scientist)

3. Third one is biology enthusiast who mentions nothing about his education.

So, i don’t feel any need to proceed further with this site.
thanks

Time: Wednesday May 29, 2013 at 7:06 pm
Sent by an unverified visitor to your site.

I figured because I’d shared it with them, I’d make the exception and reply.

Hi Hopper,

I shared your email with Shaun and Alex. We had a good laugh at Shaun’s expense, as being called a mason has at least one other meaning beyond stonemason. We had a laugh at your expense, too. Your lack of understanding at what skepticism is and your apparent need to critique our profiles to decided if that was a good enough reason to read the site was amusing.

Skepticism is a word used to describe a process. This process is using the best evidence available to reach a provisional understanding of a subject or an area of study. It incorporates logic and critical thinking at its core. As such, sometimes, the best possible conclusion reached is “we don’t know”. As “we don’t know” isn’t usually a satisfactory conclusion, scientists and researchers are often most excited by this answer as it allows them to design studies and protocols, allowing to study an area more fully, enriching the human experience and widening our knowledge base. As such “inference” is not a part of skepticism in any real form and to assume (without evidence, I may add) that this is the case, it to ignore the sometimes many decades of work that have lead to the point where interpretation of data wouldn’t be a rash conclusion.

If you can find a SINGLE issue with ANY of the writings on this site, that is based on good scientific consensus, please let me know. Not only will I apologise to you publicly, I will credit you with the correction.

Remember a couple of things, though. I am fully confident that nothing on this site has any errors at the time it was written. As I said in the second paragraph above, “using the best evidence available to reach a provisional understanding of a subject or an area of study”. While I am happy to draw conclusions based on, often multiple lines of understanding and scientific consensus, in order to surmise the evidence as best we can, anything is subject to change.

As for our credentials, these have literally nothing to do with being skeptical of claims or our ability to critically assess evidence. Sometimes and this maybe a shock to you, we don’t know things. But what we do and you have failed to do, is we learn more things. It’s a crazy idea, I know, but it really works! Sometimes this involves us speaking to people in other fields of study or reading research papers. We would love to know ALL the things, but only an idiot would hold the position that our listed attributes on the site’s bio make any of our writings any less right or valid.

What you fail to realise is that any valid corrections would in fact be pleasing to us! If we are wrong then you have furthered our knowledge and understanding.

Please feel free to contact me if you have any corrections or questions regarding posts on this site. I’ll be happy to address any issues.

On the other hand, if you just want to moan that a thoroughly disproven pseudo-scientific modality that you believe in has been taken apart, then I suggest you bother someone else.

Kind Regards,

David James – Plant Fan
Alex Brown – Tech Geek
Shaun Sellars – Freemason

Why is this being posted, rather than part of a private email discussion? Because they used a fake email address. They weren’t even interested in a reply. They just wanted to have a dig at “the website about skepticism” and run away. It’s worth mentioning that this email was sent minutes after I mentioned the website address on Wednesday’s Skeptic Canary Show about Burzynski.

If you can’t argue on the evidence I just don’t care what you have to say and neither do Alex or Shaun. If I take the trouble to read your usually stupid and disorganised emails, please go to the trouble of making a point.

End of complaint.

Predictions and hopes about Panorama on Burzynski

I don’t have any special insight into Monday’s airing of Panorama’s documentary into Dr. Burzynski. If I did I could be a bit more definitive in this post. That said, I feel fairly certain that I can make the following prediction.

Unless Burzynski openly admits during the show that he knows it’s all a bit of a scam, that he’s deliberately not released trail data to the peer review process, that he charges massive amounts for a treatment that he knows there’s no good evidence for, that he admits that he’s exploited loopholes in FDA procedures to keep it all going as long as he has, that he openly lies to patients about potential success and how treatments are progressing, then not a lot is going to change. Well not immediately, anyway.

Nothing short of a full admittance of fraud and deception will change the minds of many. Even then, there will be some “true believers” that will argue that it was spin, he was tricked or that he was forced into saying it.

In the extremely unlikely event that this did happen, unless he shut-up-shop himself, it would still be up to the State and Federal regulatory bodies to do something about the clinic. A process that has been fairly ineffective in regards to Burzynski in the past.

For me Panorama represents another, significantly larger, foot in the door. In the same way as Marc Stephens drew the attention of many skeptics with his ridiculous legal threats to Wayne and Lisa Merritt and others [1][2][3], Panorama will hopefully raise awareness to a whole different level. Adding yet more pressure to the clinic and its dubious behaviours.

Because Burzynski has failed to produce one single trial, that has then been through the publication peer-review process, in over 30 years and yet still feels that he can treat people with varying claims to efficacy, he leaves rational and logical people with very little room to come to any other conclusion, but that his claims can not be substantiated.

While no good evidence has ever been produced to show that antineoplaston therapy is efficacious in the treatment of any of the many and varied cancers that the clinic treat, people still go there. For many it’s the last and only hope they feel they have.

My hope is that Panorama will help people realise that ‘false hope’ is all the clinic offer. That, in the most trying and difficult of personal circumstances, potential patients don’t waste the last months of their lives and financially burden themselves.

I have little doubt you’ll see why this is an issue that’s important in the UK and Ireland. There have been many British patients over the last few years. Amelia Saunders, a beautiful and charismatic young girl by all accounts, only recently passed away. Her parents have mentioned their involvement with Panorama and I would expect to see them featured. As a parent myself, it’s hard to imagine the heartbreak they must feel. I hope that their story will allow for two things to happen. Firstly, make you understand why they made the choices they did and that they were doing everything they thought they possibly could do save their daughter. While I ultimately disagree that there was ever any real hope to be received at the clinic, I totally understand their desperate fight for life. Secondly, to make you realise that this is an important issue in the UK. People from this country are directly affected by a man in Texas, who refuses to either release the data or close down. A 35 year long ‘no mans land’ of “wait and see”. A place where promised data goes to die and sadly, so do many, many patients.

My main hope is that the so far very limited public discussion about Dr Stanislaw Burzynski becomes a very large and important one. I want to see public figures taking up this cause and talking about it. It’s a big hope, but at least my hope has the potential to become a reality.

For those unfamiliar with Burzynski I’ve written down a few recommendations for reading material, people to contact, a good introductory podcast etc. This can all be found here.

BBC’s Panorama to air Burzynski Documentary – Contact the Skeptics

Cancer: Hope for sale?

On Monday, June 3rd at 8.30pm, the BBC’s Panorama series will be airing a documentary about Stanislaw Burzynski and his Clinic in Houston, Texas.

The program blurb, taken from the RadioTimes website reads,

“Reporter Richard Bilton investigates a doctor’s controversial claims to have developed an alternative cancer treatment. Dr Stanislaw Burzynski’s methods have been dismissed by mainstream medicine, resulting in the US authorities trying to close him down. Why has he been allowed to sell an unproven treatment for 30 years?”

This is something many people who are openly skeptical of the Burzynski Clinic have been aware of for some time now. Rhys Morgan was interviewed for the program back in January and as well as Wayne Merritt (former patient) and Gary Marshall (currently fundraising to afford treatment). I would like to wish Wayne and Gary all the best for the future.

I am aware of a few other details that may or may not be included. Have no doubt that once the program has aired many of the big name bloggers will be putting fingers to keypad about the show.

Unfamiliar with Burzynski?

Welcome! I’m hopeful that this will be picked up by a few people searching google for more information having just heard about or just watched the show. I want to provide a little more detail about this subject that a half hour show just can’t manage and explain why this is an important topic.

Podcast – I recently had the opportunity to speak with Dr. David Gorski and Bob Blaskiewicz for The Skeptic Canary Show. You can find it on iTunes or you can listen to it online via the show’s page. It’s an hour long, but it covers in fairly good detail most of the basic information. It is worth setting time aside for a listen before or after Panorama.

Blogs – There are some ‘must read’ blog posts regarding the Burzynski Clinic.

I recommend this post by Cancer Research UK as a very good summary of the basic details, for starters.

Josephine Jones has produced one of the most comprehensive lists for anything, ever! This list has almost everything relevant that you could possibly want to read about Stanislaw Burzynski and the Burzynski Clinic. This is the link to the ‘Master List’. My personal recommendation would be to skip down to the ‘Overview’ section and start reading. There’s a lot to read.

A blogger of particular note on this subject, in my humble opinion, is Doctor David Gorski. David is a surgical oncologist, specialising in breast cancer surgery. He is also Associate Professor of Surgery and Oncology. You can find his posts on Burzynski on Science Based Medicine and on Respectful Insolence.

A little more familiar now? Then this Q&A by Adam Jacobs is also a very good overview.

Worth a separate mention is The Other Burzynski Patient Group. This site lists patient cases, from compiled details off of blogs, news sites and social media. It’s important in context and not for the fainthearted.

There are many, many more. This isn’t even my full list!

Another recommendation would be looking at the list of clinical trials registered by The Burzynski Clinic on the US Government’s Clinical Trials Database. Note that only 1 trial has been completed out of 61.

On twitter? – During the airing of “Cancer: Hope for Sale?” you will find a fair number of the Burzynski skeptics on twitter. There will be two hash tags worth following during and the show. These are #Burzynski and #BBCPanorama. For general info about Burzynski the #Burzynski hashtag is used all day, everyday by both supporters and skeptics, alike.

There are also some people who will be worth following. Due to the fact the show won’t be viewable outside of the UK during the show, this list is composed of UK skeptics:

Josephine Jones – @_josephinejones
Keir Liddle – @endless_psych
Guy Chapman – @SceptiGuy
Rhys Morgan – @rhysmorgan
Adam Jacobs – @dianthusmed
Mike Ward – @schroedinger99
Michael Ward – @badsciencemonk
David James – @stortskeptic
Andy Lewis – @lecanardnoir
Jen Keane – @zenbuffy
Alan Henness – @zeno001

Others worth following:

David Gorski – @gorskon
Bob Blaskiewicz – @rjblaskiewicz
Peter Bowditch – @ratbagsdotcom

Again, there’ll be many more I’ve missed, but I image these will be among the most active. (If you feel I’ve missed you and you care, let me know).

Please ask us you questions!

Please ask us your questions on twitter. The list of people above will be more than happy to answer. Our aim is to explain the fairly complex story in as clear a way as possible.

Many of you won’t be on twitter. You can contact many of the people on the list above via their websites and blogs. Please use the links I’ve added to their names.

Well, I guess that about it. I hope the documentary opens a few people’s eyes to the dangers of scientifically unproven medical treatments offered by the Clinic and the direct effect they are having not just in the US, but here in the UK, too.

More details will follow as they become available.

UPDATE – I’ve added a couple more posts about this. The first covers some thoughts about the show and the other has some more details about the stories you can expect to see in the show.

Happy viewing!

TearlessTeething.com – Ineffective and dangerous

Tearless Teething is a company based in Berkshire in the UK. Through their website they sell bracelets and necklaces made mainly from Hazel wood. As their name would suggest, the bulk of their marketing is aimed at children. Specifically young children who are teething.

Now you, like me, are probably wondering what teething and hazel wood bracelets and necklaces have to do with each other? Well, the tearless teething website makes some claims:

Acidity imbalance in the body is thought to be a main player in certain medical conditions and connected to teething symptoms.

Customers have reported that the Hazelwood products have also shown to be helpful with the general well being of the digestive system and certain skin irritations.

The “main player”? I’m yet to be convinced. Also, “Customers have reported”? Well, that’s always a sound way of ensuring efficacy for your product! Just to be sure I had a scan over the PubMed database for studies conducted into hazel wood and pH levels and found nothing. Not even a single poorly conducted, altmed sponsored study. In fact, I couldn’t find anything that suggests that hazel wood has any beneficial effects for, well, anything medically related. Nada. If you find any data which supports the claims made on this website, let me know and I’ll be sure to look into it.

Then there’s the good ol’ fashioned claim that it’s an old custom, nearly lost to history:

The native Americans were the first to discover that if they were to put hazel wood Chips on their babies’ neck it would soothe teething pains. Almost forgotten Tearless Teething reintroduced this old remedial way to holistic healing in the form of their necklaces and other products to help not only the babies but to take advantage of the natural benefits of the hazel wood, not only for the infants but the whole family.

Ah, so it’s holistic healing? In other words, ‘whole body healing’? That certainly fits in with the claims made. If you compile the list of conditions these hazelwood necklaces and bracelets are supposedly curing, treating and helping from the site and the testimonials on the site, you get a list that looks like this:

reduce symptoms of teething
eczema
intestinal health
extremely bad eczema
controlling baby’s temperature
chronic headaches/migraines
dry, cracked hands
cystitis
colic

As you can see, hazelwood is certainly good for a whole manor of ills. Things like eczema and teething are repeated many times over, with mention of things like cracked hands and cystitis only being mentioned once a piece.

The claims on the site are fairly vague, but when you include the testimonies on several pages of your site, you have some responsibility for the claims that are made.

There is no evidence to support any of these claims. Despite the enticing post on their Facebook page that:

None has yet appeared on their site, some seven months later.

The FAQ’s page on this site is a thing of wonder for several reasons. Apparently, this “all natural” product has a 2-3 month lifespan and will need replacing after this time. Under the heading “How will I know when my necklace is no longer working?” It reads:

First, you will notice the symptoms returning or you will also see that the extremities of the wood beads have darkened possibly both. This is easy to see. You will then need to get a new necklace because at this stage, the necklace is no longer absorbing acidity. We recommend replacing them. For best results 2-3 months Depending on severity of Symptoms. Sometimes longer.

And there’s another unscientifically tested claim, that the wood absorbs the acid from the skin. I assume that’s what changes the colour of the wood? Your guess is as good as mine! (the person who told me about this site did tell me that that was what they had been lead to believe was the reason for the change in colour). Also, every 2-3 months! That’s a great marketing hook if ever I saw one. What parent doesn’t want the best from their child or children?

These things aren’t Live Blood Analysis (LBA) expensive, but they aren’t free. Prices are around the £15.99 to £16.99 mark, making is somewhere between the £50 – £100′s a year mark on bracelets, depending how often you replace them. I think I bought a hazel wood necklace once for about £2 in Lanzarote, but of course these bracelets and necklaces have holistic properties and are clearly worth more than that.

I mention LBA because that’s another pseudo-science that makes claims regarding body acidity as the reason for people developing things like diabetes and even cancers. I recommend reading some excellent posts on Live Blood Analysis by Josephine Jones.

More than just pseudo-science

So there’s no evidence to support the many claims made by Tearless Teething. The very idea behind the claim that it can reduce or eliminate teething pain just sounds so ridiculous and the lack of evidence supports this. That it draws the toxins from the skin, rebalances the body’s pH level and that this in turn has any effect on pain is ridiculous. In fact, mechanistically, their claim is more plausible if the hazel wood introduces a toxin to the body! A toxin that effected the conductivity of nerve endings. This would have other side effects, you know, like potential paralysis and death but mechanistically it’s more plausible!!

This all said, pseudo and non-scientific claims made by this company are not my biggest worry. While I feel people are being exploited, there appears to be a genuine risk of suffocation with this product. Even more worryingly this risk appears to be two-fold.

Suffocation: Risk 1

If you continue to read the FAQ page you will see the following statement under the heading “It is normal that the wood to peel after a while?”

It’s normal for the wood to peel after a while. It’s a natural factor. We have no control over that. The wood is natural so can vary in colour some lighter and some darker.

Yes. That’s right. The necklaces and bracelets peal. You’ll all be surprised to know that I’m no expert on hazel wood, so I can’t say how big these bits of hazel wood are. But these are being marketed at children from birth. Even a flake a couple of millimetres in length could cause a choking hazard to a child of less than a year old. Remember they are marketing this to parents with children aged zero. Also, just because “we have no control over that” does not absolve the company of their legal obligations towards safety!

If you sell a product that bits fall off of, then I recommend you don’t sell it to children aged zero!

Suffocation: Risk 2

Interesting, the FAQ’s section on the Canadian site that many of the testimonials come from, called “Pure Hazelwood/Pur Noisetier” (French), lists a few details about this that the Tearless Teething site have failed to include:

Warnings
Parents must supervise children less than 3 years old wearing any necklaces.

Do not allow children to handle or wear the necklace while in a crib, bed or cot.

Now the Tearless Teething site make no mention of removing the items when in bed. The only mention (which i’ll go into later) is to double it up around the ankle if you’re worried. In fact on the “product” page, at the very bottom underneath “product safety” says the following:

Wear the necklace all the time even bath times only remove when swimming. EXCESSIVE removal may result in the weakening of the safety clasp. If you find it nessecary to remove more than twice a week then please replace more regulary than 3 months to preserve the safety of this necklace.

I’ll talk about the safety clasp in a bit, but you’ll note that there is no mention of removing the product when a child is in bed like the Canadian site did. In fact they are actively recommending that you don’t remove the product.

There’s one other point to add in here. The site recommend that you use both the necklace and bracelet. Under the heading “What do you recommend between a necklace and a bracelet?” Is says:

Wearing both necklace and bracelet together will maximize the benefits. And if you chose to remove the necklace for the day, your acidity surplus is still decreasing because of your bracelet.

Now, they are a company and they want to sell as much as possible. But when you remember that recommend that you wear them all the time, (bar swimming), make only passing reference of removing them on children at bed time and that bits naturally fall off the things, this seems to spell a recipe for a real and serious choking hazard.

This is remarkably dangerous! In my view they aren’t just neglecting their own duty of care here, they are recommending that parents do the same. The idea of leaving a necklace and bracelet on a child who is a few weeks old is so potentially dangerous. Yet when you have a company saying you should leave it on, it’s hard to know what to do. When you’ve got a child screaming in pain because of eczema or teething pain, you’ll try a lot of things.

They offer only one piece of safety advice, listed under the heading “Are the baby necklaces safe?”, which is:

The clasp has been specially designed with children’s safety in mind. For example, if the necklace got caught on a blanket’s threads, the loops on the clasp will open. If you are not comfortable with your baby wearing the necklace at night, another option would be to wrap it around baby’s ankle so they are still getting the benefit of the Hazelwood against their skin. However excessive removal may result in the weakening of the safety clasp.

Even here they aren’t saying you should, they’re saying “If your worried, we still recommend you leave something that naturally falls apart in easy reach for your child and don’t forget if you keep worrying it’s going to cost you more because you’re going to have to replace it more often”. I might have paraphrased a little, but I feel I covered the tone of the statement they’re making.

So, what about the safety clasp? This photo from the site appear demonstrate what happens upon the product getting caught or snagged on material.

Now, this is just a small observation. But if its weak enough for a infant to break the clasp open while, say sleeping, then it’s probably going to break fairly easily with general usage. Your kid is going to pull on it, it will happen! This then presents a choking hazard. Alternatively, it doesn’t break under minimal pressure and therefore presents a strangulation hazard. You sort of cant really win when you design something to break as a safety feature.

Summary

Bit of a long one, I know. But I wanted to get the points about the unscientific claims and my fears about the choking hazards on the record in one post. I have contacted both Trading Standards (TS) and the Advertising Standards Authority (ASA) regarding Tearless Teething. I believe the products to be a double header of both dangerous by design and ineffective by current scientific understanding. You just can’t make claims for treatment of ailments without having the evidence to back your claims up and you can’t sell products without either the relevant product safety or warnings in place. Not cool.

I will update when I hear back from TS and the ASA.

Pre-post Post: Why being a charity doesn’t excuse you from promoting pseudo-science

The post that’s coming after this is about a charitable organisation that supports the use of Reiki, Aura reading and dowsing. They take no money for expenses and are completely funded by donations from their organising committee. All public donations and money raised at events goes directly to the charities they support.

And they support good charities, such as Leukaemia Research, Hospice provision, The Red Cross, LIVES, Sailability and many more.

They also happen to be, in their words, a world sporting body. Now I think they’d agree that they aren’t one of the major world sporting bodies, but nether the less, they claim legitimacy as one.

I’ll go into more detail in the main post regarding why I believe they claim the use of Reiki, Aura reading and dowsing. What I will say now is that by doing so it does add a difficulty or ‘skill’ element to their game, which is both otherwise lacking and also makes it less likely to be recognised as a ‘sport’.

Here’s the thing. I’m happy to talk about the reasons behind their decisions and discuss the good work they do raising money for charity. But when you put yourself in the public sphere and on TV and promote unscientific methods, I’m going to question it. Being a charitable organisation doesn’t excuse promoting things that have no good evidence to support them.

People see you doing this and it lends legitimacy to these unproven practices. There is indirect harm caused to the public by promoting as true things that have no right to do so.

There are other ways in which money could be raised for charity, even within the confines of the current game, without having to use or promote the unscientific.

Basically, I feel a bit bad that I’m going to complain about an organisation that raise money for charity! Things will be a clearer after the next post!

Burzynski: Why some patients have Burzynski rubbing his hands and laughing

It’s finally time to admit it. I am @BurzynskiSaves… and so am I and I am as well. More importantly @Ac2cSheila is as well. #Burzynski

Welcome!

I’d been in the Burzynski Patient Group for just under a week before I got thrown out. Not because of anything I’d actually said or done. Just because I was deemed a threat by one patient and outspoken supporter, Sheila Herron.

I was very clear when I was welcomed to the now 357 strong community that I had my reservations about some of the practices at the clinic, that I wasn’t there for an argument, that I welcomed open discussion and that I wasn’t a patient of the clinic.

I had a slightly hostile response from a couple of members of the group, but that’s to be expected considering the reputation some have attributed to the “skeptics”. But through polite discussion, empathy and reasoned discussion even those who were critical of me as a skeptic were happy for me to be in the group and saw that I wasn’t there for any other reason than I’d originally stated.

I wanted to reach out, not to the people you see on twitter everyday shouting about how good and miraculous Burzynski’s “cure” is, but to the patients you never hear from. They don’t keep online blogs or YouTube channels, they aren’t praising Dr. Burzynski on Facebook or Twitter. They just go about the daily business of trying to live and get cured of their cancer. They are the non vocal majority. While I do question the clinic, I do not and have not ever questioned any of the patients or their right to choose where they receive treatment.

It recently came to light that the @BurzynskiSaves twitter account has been operated by multiple people. I won’t speculate publicly as to who had previously been in control of the account or other people who are tweeting from the account. What we do know that Sheila has admitted to being one of the people currently in control of the account.

The @BurzynskiSaves account has in the past been responsible for some fairly shocking behaviour. People criticising the clinic have found themselves subject to personal attacks as well as having patients copied in on tweets. A practice that can be both unsettling for skeptics and upsetting for patients.

I poked a little fun at this recent change in account holding and to my surprise I received a reply.

About 10 minutes later Sheila deleted this initial response and instead replied with this.

This was followed by a stream of tweets from Sheila.

After pointing out to Sheila myself that I was in the group, she took it upon herself to block me. I want to point out that this is completely her right. I’m not a patient or family member.

Ordinarily I wouldn’t feel the need to write any of this, but I wasn’t given the chance to reply to questions and comments raised on the patient group because of this.

Meantime on twitter, Sheila was accusing me of running away and hiding. I just want anyone who I communicated with me in the group that I’ve had my right of reply silenced by someone simultaneously accusing me of running away.

The real point

What Sheila doesn’t realise is that Dr Burzynski doesn’t need saving or defending from us “skeptics” as she has often claimed in the past. He’s been doing just fine without her.

Whether he is honest in his belief or not, Dr Burzynski must be fairly pleased that people like Sheila do such a good job of distracting us all from the real topic at hand; The efficacy of the treatments offered by the Burzynski Clinic.

Science based medicine, like Dr Burzynski claims to do, shouldn’t be conducted based on luck, hope and desperation. There should be good, properly conducted trials, with a good supported evidence base. Not SEC fillings and conference summaries. Data should be properly published and available for scrutiny through the peer-review. It should be duplicated, independently, as to remove any fraudulent claims and help reduce any biases. We just aren’t seeing that with The Burzynski Clinic.

I challenge Doctor Stanislaw Burzynski to show my current understanding to be wrong. Show me and the world the data that you claim wasn’t accepted by The Lancet. While you’re at it, show us the rejection email. It’s right there on your computer. All you need do is forward it to me, or any of the other “skeptics”.

I don’t suspect I’ll be welcomed back to the Burzynski Patient Group on Facebook, which I feel is a real shame for me and some of the patients who have asked me questions, that will now remain unanswered. Here’s the simple fact: If Dr Burzynski had completed and had had peer-reviewed ONE study, we would have our answer, either way, and this discussion and my time would not have been wasted.

I wish all patients at the Burzynski Clinic all the hope and luck in the world.

Sometimes there’s no option but to shoot the messenger

Near the end of last year I spotted a tweet on my timeline containing the following image:

Whenever I come across things like this on the Interwebs, a Little Red Flag of Skepticism pops up in my head. (It has a white interrobang on it.) So, just to be sure, I popped the 0906 phone number in the image into Google. The third result was this page on Snopes

As you can see, this wasn’t actually a hoax; there really had been a scam, but it dated back in December 2005 and had been shut down quickly. As a result, this information didn’t really serve a purpose in 2012. So, as the helpful citizen that I am, I thought I’d reply to him, letting him know that there was nothing to worry about and that the scam had been shut down seven years before.

His response was four simple words.

“Don’t shoot the messenger.”

Now, this got my back up for two reasons. Firstly, I was very careful to word my reply so that he didn’t think I was being rude. And secondly, I don’t believe it even applies here.

To me, saying “Don’t shoot the messenger” is a cop-out. Surely “Don’t shoot the messenger” is only valid when you don’t have any control over the content of the message, or when you aren’t in a position to decide whether to pass it on. After all, it seems unlikely to me that the Twitter user in question was forced to pass the information on. “Don’t shoot the messenger” can apply to Royal Mail, DHL or anyone handing a sealed letter to someone. You can’t really apply it to bloggers. Even microbloggers.

I can understand why he believed that was taking that stance: this wasn’t something he’d made up himself, and I’m sure that he had probably thought that he was being helpful to his Twitter followers.

By posting this, he wasn’t simply being a messenger. He was saying to the world, “I believe this to be true, so take it as such.”

If you’re on any social network you have a responsibility to the people who might read what you post. I know that might sound surprising, but what you have to remember is that by posting things on Twitter you are effectively self-publishing. Also, it doesn’t really matter whether you have one or a million friends or followers. In fact, it doesn’t matter if you have no followers at all; if your post can be found on the Internet then that’s enough.

This issue is coming up ever more frequently, such as the McAlpine furorelast year. Even during the recent bombings in Boston, MA, people on Reddit were passing details around of people who had been falsely accused of carrying out the attacks. This lead to the FBI having to release pictures of the suspects earlier than had been planned to prevent a witch hunt.

The fact is that it is your responsibility to check whether the information you’re passing on at least passes a basic fact check. A quick search on your search engine of choice really takes no time at all. Pick a couple of key words or bits of information from what you’re about to share. And getting defensive about proliferating hoaxes solves nothing.

This applies to articles that other people have shared as well. I always try to take the time to read articles before I share it with others on Twitter, even if it comes from this very site. If I have time, I’ll check out any references mentioned in the article as well. Not only does this mean that I have a clearer understanding of what I’m sharing with others, it also means that I’ve verified its validity.

Now, I know it isn’t possible to vet the entire Internet. And there will always be times when, even when we’ve tried our best to check our sources, something slips through the net. But if you are pulled up for being wrong about something, don’t get defensive and deny responsibility. Politely apologise and thank them for letting you know. Then correct your mistake if you can, and move on.

It is practically impossible to remove something from the Internet. It doesn’t matter whether it’s fact or utter nonsense. Rumours spread like wildfire. I know that very little is going to happen as a result of the PDS scam being passed around the Internet. No one will be harmed, no one will lose any money. But it highlights the responsibility that we have, whether or not you’re a card-carrying skeptic, to do our very best to check things before passing them on to others.

WDDTY: The competition results and What ‘What Doctors Don’t Tell You’ Don’t Tell You!

And the winner was… Me!

Well, I won the moral victory. In a couple of ways, actually.

Background

When I got wind of an online competition being run by the pseudo-science and alt-med magazine What Doctors Don’t Tell You, I figured it would be a good bit of skeptical activism to infiltrate and take it over. Generally disrupt the smooth running of things within the rules of the competition.

I have to say that some members of the skeptical community got fully on board with this!

The competition was to help choose a new strap line for the magazine. You submitted your entry via an app in Facebook and then other people could vote on the entries. The top five places were offered a years free subscription to the WDDTY mag. The competition ran until 11.55 p.m. on Sunday 14th April 2012.

Well, thanks to some great team work and some help from Simon Singh on Twitter, we flooded the competition with some of our own suggestions. The trick was to be subtle in your mockery in the first few days of the competition. They were removing entries within minutes that were rude or just clearly mocking the magazine. After a few days they stopped editing the entries. This lead to some fairly odd examples being left on the list. Bob Blaskiewicz’s entry immediately springs to mind, but I’ll get to that in a minute. There were some genuine entries, but they on the whole, only garnered minimal votes.

Original top 5

Here’s what you’ve all been waiting for. The top five places and the winners to the years subscription to WDDTY are:

1st – David James: Just because you’re paranoid, doesn’t mean they’re not out to get you.

2nd – Megan May: Empowering You to Make Informed Health Choices.

3rd – Bob Blaskiewicz: Because Doctors Eat Babies

4th – Oliver Marler: All of their sumptuous fantasies they wanted to tell you but couldn’t.

5th – James Lennox-Gordon: What Doctors Don’t Tell You: Because it’s Nonsense and It Would Be a Waste of Their Time

It’s fair to say not a bad result in terms of skeptical activism. Four of the entries are, how do I put this, not fully in the intended spirit of the competition. I think special mention should go to my friend and weekly contributor to The Virtual Skeptics, Bob Blaskiewicz. His strap line really made me chuckle and I believe was a direct reference to Dr. David Gorski of the Science-Based Medicine Blog, although I could be wrong.

Playing by their rules

It’s fair to say I was fairly pleased with that result. So pleased in fact, that I tweeted @_wddty asking them if the wanted my address. As you can see below, I also sent them a small visual gift as a token of my appreciation.

The pen in question was part of the welcoming package that all attendees of The “Question. Explore. Discover” (QED) conference had received that weekend. A science and skepticism conference held in Manchester, England every year and well worth the trip if you can make it.

I hadn’t heard anything back that night, so having been up for the previous 42 hours, I decided to get some well deserved sleep.

The next day I heard that the winners were about to be announced, but that some entries had been excluded. I’ll admit, I wasn’t hopeful! The What Doctors Don’t Tell You Facebook page had covered its bases in advance of announcing the results with the following comment:

This was then followed by the actual winners being announced:

Bugger it!! Striped of my tittle before we’d even had the medal ceremony! It’s worth pointing out that four of the top five were disqualified. Me, Bob, Oliver and James, leaving only Megan.

Well boo and hiss to What Doctors Don’t Tell You! I took my campaign for answers to twitter. This was the first competition I’d won since I was at school. I wasn’t going to take this without an explanation. I wanted to know exactly why my entry had been “in bad taste, or offensive”.

At this point they took a bizarre approach and instead of answering my question, they accused me of sending them an offensive message before. They were referring to tweet I’d sent when the competition ended. Apparently the Big Pharma pen is offensive to What Doctors Don’t Tell You. Really‽! What a really odd way to answer my question! The timeline of the conversation is here:

Now, I’m aware I was never going to change their minds and the Terms and Conditions do pretty much leave it up to WDDTY to decide what they view as “offensive” or “in bad taste”, but it was still funny that they couldn’t even make a sensible reply via twitter, without becoming overly defensive at the idea of evil Big Pharma!

I had a try at getting an answer out of them on Facebook.

To show their openness and interest in dialogue, they deleted my comments and blocked me from commenting any further on their Facebook page. A classy move that should be seen as a real ‘red flag’ to a skeptic. I wasn’t being rude or offensive. I had a genuine question that I wanted an answer to. Just because they didn’t like my question, or possibly (probably!) me is no reason to become so defensive.

They then posted a now out of context reply.

Again they claim my tweet was “pretty offensive”. Frankly, I quite liked the pen.

I should add that I never really did get a satisfactory answer for my disqualification. I should add that if they’d said “It’s our competition and we’ll do what we want” would have been a satisfactory answer for me. The fact they chose to engage me and accuse me of being “pretty offensive” was just odd and didn’t show them in a very good light.

The real winners are…

The fun continues here because they then had to choose new and worthy winners. People, who in their words would be “somebody that really want to get our magazine every month and enjoy it”.

Here’s the list of hand picked winners (not bitter!) from the list of entrants:

1st – Megan May: Empowering You to Make Informed Health Choices.

2nd – Catherine Flint: Keep an open mind without the need for brain surgery.

3rd – David Bradley: Taking the doctor out of your picture of health.

4th – Peter Stevens: Ask For The Evidence. Ask Here.

5th – Paul Ormsby: Educating instead of medicating!

Well. That’s a sight to behold! How did they really think that some of those were genuine entrants‽ I know in my appeal for skeptical entries to the competition I said that you needed to be subtle, but well played David Bradley, Catherine Flint and Peter Stevens!

If you can’t see the subtle humour in Catherine’s submission, I’m not going to explain it to you. I will however leave you in no doubt as to Catherine’s opinions on WDDTY, just so you feel happy that it was a deliberately worded entry:

As for David Bradley’s entry, I shouldn’t need to do much more than point you towards his ScienceBase website or that some of his previous entries were removed almost immediately! Not convinced? How about our open discussion on twitter about trying to slip one past them:

Lastly, here’s the link to Peter Stevens post after winning the competition. He’s a little quote from his post:

This publication falls below my expectations for plausability and makes startling claims such as “Foods That Kill Cancer” and “Mega-cure for the incurables – Vitamin C fights it all, from measles to AIDS.”

What amuses me most is that they chose these winners, rather than going for the top five. They chose to include David, Catherine and Peter’s entries as people that would “really want to get our magazine every month and enjoy it”! Three of the five winners are skeptics, thus preventing the free subscriptions going to a less critical eye, where the magazine could do more damage. I call that a result!

Well played to What Doctors Don’t Tell You for poking fun at themselves. Or, what’s more likely, well done for not even realising when you’re being fooled by obvious deceptions that, if you look even slightly below the surface, you would realise aren’t what you thought them to be. Sounds very familiar to the editorial process at the magazine, doesn’t it?

In summary

I’d like to thank all of those who took up the cause on this one. Yes, it was just a silly little online competition, but by taking it over we sent a message to the folks at the magazine that we are watching. That they won’t be able to attempt to engage with potential readership, by reaching out, without someone noticing.

WDDTY is a dangerous propaganda magazine that tells people that the MMR vaccine isn’t safe and that mercury in your fillings is dangerous. They promote alternative and unproven cancer therapies that deserve no place on the shelves of our supermarkets.

It’s important that we stay vigilant and with a little bit of collaboration we can show people like this magazine that we won’t stand idly by while they promote themselves.

Skeptical Activists, I salute you!

Wayne Dolcefino, The Burzynski Clinic and the Institutional Review Board

The email below is a response and summary to a phone conversation I had with Wayne Dolcefino just before Easter, on the 26th March 2013. We discussed the details of a recent inspection of by the FDA of the IRB (Institutional Review Board) who are responsible for assessing patient suitability for protocol acceptance at the Burzynski Clinic. The FDA inspection observation document is worth reading, but a good summary of their findings can be found on The Other Burzynski Patient Group website.

If you’re interested in finding out more about the Burzynski Clinic then this Q&A is a fairly good starting point. This email forms part of a now large series of emails posted on this site between Wayne Dolcefino and myself. Worth having a read for background.

David,

Hope you and your family had a great Easter.

As I told you on the phone the observation notes referred to are not related to any FDA inspection of the Burzynski clinic. They are observations of the BRI IRB, which is a separate company which works for alot of researchers , including Dr. Burzynski and his clinic, and the research institute. I have never met, nor do I work for those folks , so it would be inappropriate for me to opine on the few observations made there.
”
I am sure all your self proclaimed medical expert friends out there know that FDA observation notes are not a conlusion of anything.’ They are inspectional observations, and do not represent a final agency determination.

And they are certainly no reflection on Dr. Burzynski and his clinic. The IRB has a director, and he does not work for Dr.Burzynski. I would address the bloggers by name , the ones who used this unrelated review to launch their increasingly tired attack on the Burzynski clinic again, but honestly, they are destroying their own credibility with each article and commentary, so I do not think they deserve the personal shout out.

I did get a kick out of the conspiracy theory that suggested I wrote clinical trial, instead of clinical trials in my response to hide the fact there were multiple trials over years. You got me. Even though the multiple trials are part of hundreds of government records, including dozens of articles and speeches by Dr. Burzysnski and his staff around the world, I have apparently convinced someone out there I was hoping to hoodwink you, instead of making a simple typo.. Boy you guys are good.

Just and FYI about observation notes, which I am sure your medical expert friends already know. I know from my research that often files are misplaced when they are from research done 15 years ago, and found as soon as they know there is a question, sometimes the inspector is using current FDA rules when they may not have applied at the time of the resarch, and sometimes, the inspector just makes a mistake. Sometimes reasonable people may disagree on a a technical issue that will be resolved.That is why responsible people probably would wait until the IRB or the hundreds of other recipients respond and see if the FDA is satisfied.

You asked if the clinic talked to the IRB about a warning letter five years ago. They did, and like the FDA were satisified by the responses.

As I am sure you know the FDA sends out hundreds of observation notes, a way to check their inspection work, and then warning letters. Virtually all of them are resolved as part of the normal regulatory process that comes with drug research

Some of America’s biggest hospitals get warning letters, like M.D. Anderson. It hardly means they have done something wrong. I would be curious if someone took the time to research how many FDA inspections of pharmaceutical research resulted in no observation letters, versus the ones who did. Why don’t you guys get on that and report back to me for comment.

Comon guys, I know you wish something would happen to help revive your increasingly desperate and diminishing arguments, but every time you leap to a ridiculous conclusion , you actually end up helping me, so thanks.

P.S. I do not drink Kool-Aid at the clinic. Just coffee, with a little sugar.

I’m just going to leave that email there. I’m not going to address the points he makes directly. I will add that Wayne’s observations that this was only an interim observational report are valid. It is. But it still raises valid cases and concerns. Whether these issues are resolved with satisfaction as they were in 2005 remains to be seen. All we know is that the IRB was inspected and not for the first time, concerns have been raised by the FDA in relationship to record keeping and acceptance of patients into protocols. On a personal note, I wouldn’t continue to do business with a company that had issues like this. You would hope that a good cancer clinic would want to distance themselves from these sort of issues. But hey, that’s just my opinion.

I should add that Wayne was a great pains to make me aware that there is no link between the clinic and the Institutional Review Board. Here are the some of the relevant quotes from our conversation regarding that point.

“Not only do he [Dr. Burzynski] have nothing to do with it [IRB], in fact I think it would be prohibited for him to have anything to do with it.”

“There’s a doctor… I asked the question myself, because I don’t know… some guy named Hazelwood.” (I interrupt to offer the female first name of Carole). I don’t know if its a man or a woman. I’ve never been involved in any discussions with them. Err, I called the clinic this morning because I wanted to talk to him and they can’t even… they’re not even connected phone wise with them, there’s no relationship in that way. There are other people in that building, it doesn’t to me… there isn’t a connection.”

“I’ve never met this Hazelwood person. I know he’s not an employee of Dr. Burzynski’s.”

It’s at this point that I should link to the last annual SEC (Securities and Exchange Commission) fillings for the Burzynski Research Institute, Inc. Section 10 states that Dr. Carlton Hazelwood is one of only four board members. While being a director for the Institute is not a directly paid position, nor is it compensated in the form of shares, it does show that there is a direct personal relationship.

When Dr Burzynski is in the business of trying to get approval to licence and commercially sell Antineoplastons, it strike me as dubious practice that the Chair of the Burzynski Clinic’s IRB is also a director of the clinic itself. I want to be careful not to insinuate any wrongdoing, but it does seem that you could assume a conflict of interest. You would be forgive for assuming that is would be in Dr. Hazelwood’s interest to show a favourable bias towards allowing patients to fit the clinics criteria for acceptance to protocols. But that’s not an opinion I’m willing to agree with.

All of this speaks to more issues for the clinic. This isn’t the first time the IRB for the Burzynski Institute has had concerns raised about it. I suspect this won’t be last issues raised about the Clinic in general, either.

Anyway, I thought I would share this, if a little behind the times! I feel there may be more important things coming.