Buying Young Democracy

Are Unite, the union, abusing the inaccessibility of the 2016 Young Labour Conference by funding travel and accommodation for delegates who have either openly supported or are affiliated with groups who have supported their preferred candidate for Labour’s National Executive Committee Youth Representative? This is a question I’ve been pondering since Monday, when I was offered travel and accommodation as a Labour Students Delegate for Oxford Brookes Labour Club (OBLC), paid for by Unite, and offered to all of the youth delegates in Oxford – regional and students, not just Unite’s own.

Just before the end of the Autumn/Winter university semester in 2015, my university’s Labour club held a meeting to elect a new chair, as well as our club’s delegates for the Young Labour conference in Scarborough, at the end of February 2016. I was one of the three delegates selected. Afterwards, one of the club’s members told us that he’d heard that there would be funding for travel and accommodation for “the right kind of people”. That seemed a little iffy, to say the least. Who are the right kind of people? I wasn’t entirely sure what to make of it.

At some point in the meeting it was also suggested that we endorse a particular candidate for Labour’s National Executive Committee Youth Representative. We only heard the one name, and a brief summary of why we should support them. There was no mention made of other candidates standing. Enough people in the room agreed that we should support this candidate, so the motion was passed.

A day or so later, the other delegates and I were introduced, on Facebook, to someone from Oxford University Labour Club (OULC), a club who also endorsed the same NEC candidate. The previous chair of OBLC mentions that we’ve decided to endorse the candidate. We’re told there will be the chance to get expenses for accommodation from “the unions”, and OULC will be organising a coach to take us to Scarborough. That was a bit of a relief, because I wasn’t exactly sure how I’d get to Scarborough otherwise, and didn’t think anything more of it.

Fast forward to Monday. I was added to a group conversation on Facebook with regional, union, and Labour Students delegates to the Youth Conference from the Oxford area. We were told there was good news – Unite will be paying for our accommodation and travel up to Scarborough, to “encourage youth participation”. The conference is far from accessible: tickets are £30 (£40 for Labour Students delegates), plus there’s travel and accommodation for a whole weekend to organise and pay for. Trains from Oxford, even with a railcard, are £75 return. Coaches are no good either, due to being 10 hour journeys and costing about the same. We were asked to fill in a form, provided by Unite, to register for travel and accommodation support.surveymonkey

 

 

Later in the evening, a friend brought up that OBLC had decided to endorse the aforementioned candidate. After trying to remember how and when that had been decided, I was reminded that it was at the chair/delegate election meeting in November. I visited the candidate’s Facebook page, and noticed that they’d been endorsed by Unite.

Hang on a second – Unite are paying for our travel and accommodation. Is this what was meant by “the right people”? Are Unite only paying for us to go to the conference because our university Labour clubs have also endorsed their preferred candidate? I tried finding out if any other groups of delegates have been offered the same arrangement, but I couldn’t find any that had. I’ve seen many, many people complain about the inaccessibility of the Young Labour conference – people who legitimately won delegate places, friends who have said they can no longer afford to go, and people who are likely to be unable to attend the conference due to the high cost of tickets, travel, and accommodation. Some groups are even having to crowdfund absurd amounts of money to be able to attend the conference, though the Oxford group have said that they are trying to help one of the groups backing the same candidate too. However, I’ve heard from friends in other Labour clubs – ones who haven’t backed the candidate – who have approached unions, but haven’t been given any assistance to attend. It beggars belief that our Labour Party – with all their new members, and the additional funding that brings in – won’t do more to subsidise the Young Labour conference to make it accessible to elected delegates at the very least. In the words of the candidate themselves:

With a registration fee of £40, and delegates expected to arrange their own travel and accommodation, and no sight of a hardship bursary, I fear that the conference will only be accessible to those with the means to pay.
Those with families, or being paid below the living wage, or struggling with high rents, or on Jobseekers’ Allowance, will struggle to afford this huge costs without financial assistance.
If we are to have a truly democratic and autonomous Young Labour, then we can’t price members out of our democracy.

The more I think about it, the clearer it becomes that Unite are trying to abuse this inaccessibility by providing travel and accommodation for those who have been affiliated in some way with, or have openly endorsed their candidate, ensuring they’ll be there to vote for Unite’s preferred candidate whilst not concerning themselves with other delegates who may not. The candidate themself benefits from the travel and accommodation doubly – not only because they’re guaranteed a certain number of declared supporters, but they attend the University of Oxford and therefore will also be getting free transport and accommodation. There’s no way of knowing if the candidate has any idea about this arrangement, other than that it’s providing free travel and accommodation to delegates from the Oxford area.

It seems very much like Unite are trying to indirectly buy more influence in the Labour party by paying for “the right kind” of delegates to attend the conference so they can vote for Unite’s preferred candidate to be elected onto Labour’s National Executive Committee; and they offered the chance to me due to my club’s endorsement. To me, that is unacceptable. The position of NEC Youth Representative shouldn’t be won because an interested group paid out to guarantee the attendance of supporters of their candidate, but should be a decision for all people who won delegate positions. Everyone should be made able to attend, as the Chair and NEC candidates have all argued, regardless of who they support. I voted for Corbyn in the leadership election, and know how important unions are. For all the talk of ‘a new kind of politics’ and expanding democracy within the Labour party, the complete opposite is surfacing here. The base problem of inaccessibility isn’t caused by Unite, but if they’re willing to exploit it to their benefit, it draws into question everything they claim to stand for on democracy and accessibility.

Panorama and Burzynski

Set your HDR to record – Panorama have announced the air date for their investigation into Dr. Stanislaw Burzynski, his antineoplaston therapy and his clinic. Monday June 3rd at 8:30pm on BBC One (HD). Read on for more information…

Back in January, I was contacted by Panorama at the BBC. They told me they were doing an investigation into Dr. Stanislaw Burzynski, the doctor who offers the controversial antineoplaston treatment to cancer patients at his Houston, Texas cancer clinic. They wanted to know if I’d be interested in taking part. Of course, I accepted and was interviewed later that month about my involvement with the clinic and Dr. Burzynski.

You may recall that back in November 2011, somebody called Marc Stephens, representing the Burzynski Clinic, Burzynski Research Institute and Dr. Stanislaw Burzynski himself contacted me (and others) with threats of a libel lawsuit if I didn’t remove my heavily critical, though not libellous, blog post entitled “The Burzynski Clinic”. I’d written this blog post back in August 2011 in response to one of the many big media campaigns run by families to raise the hundreds of thousands of pounds to get a place on one of Burzynski’s clinical trials. Marc Stephens went on to threaten to contact my school “to inform them of [my] illegal acts”. He also sent me Google Maps images of my own house, apparently to confirm that it was my mailing address, so they could send the legal paperwork. You can read about this all in much more detail, including the entire email back and forth on my blog post “Threats from the Burzynski Clinic”. Eventually, the Burzynski Clinic fired him, saying they found his actions inappropriate.

This was the main focus of the interview. I’m not sure what will make the final cut, but I’m confident that Panorama will handle this topic with sensitivity whilst also being firm and not falling foul to false balance.

This is something you do not want to miss. Nor the fall out that will follow in the next few weeks. Let’s just say, Burzynski is in for a hell of a time, these coming months…

Remember, Monday June 3rd at 8:30pm on BBC One (HD)!

UPDATE: I received a phone call yesterday informing me that, unfortunately, my interview hasn’t made the final cut. The programme is only half an hour long and I guess if something doesn’t fit the narrative too well in the short time they had, it’ll be left on the editing floor.

Burzynski: Morally reprehensible

I find Dr Stanislaw Burzynski morally reprehensible.

I think this because his treatment is sold for extortionate amounts of money to vulnerable, dying cancer patients in their last months – sometimes bringing them thousands of miles away from the majority of their family – so they can be injected with a drug that’s been in development for more than 30 years, yet has no evidence base to support its use. We also know that he uses large amounts of chemotherapy in his clinic too but charging extortionate amounts of money for it.

Also, I think he is morally reprehensible because if he really has discovered a cure for various cancers, why the hell is he sitting on 30+ years of research when he could publish it and convince the scientific community that antineoplaston therapy is effective? He has a moral duty to do so. Hell, even if the results are negative he has a moral duty given the amount of money he’s charging. If it turns out that his treatment is ineffective, he should put his hands up and state “Look guys, it was a hypothesis that just didn’t work out.” If it turns out that his treatment is ineffective, he’d be wise to donate the large sums of money he’s made to cancer research. Sure, it’d be humiliating to have his life’s work undone, but at the same time it means that cancer patients wouldn’t be misled into believing his treatment is effective.

Another thing I don’t understand is why Burzynski’s patients/relatives of patients don’t demand that he publishes the results. They’re paying for this research to happen. Without their funds, Burzynski wouldn’t have been able to do the research. They funded it, so surely they have influence over whether he writes the trial up. Or am I just being too hopeful? If I were in that situation and something appeared to be working, I’d want it to be written up to further scientific research so that more people could benefit.

I have one thing to ask of you and one thing only. Tweet something along these lines:

RT @rhysmorgan Burzynski has had more than 30 years to publish his data. Why doesn’t he prove antineoplastons work? http://rhysmorgan.co/2012/01/burzynski-morally-reprehensible

or

RT @rhysmorgan Burzynski has a moral duty to publish his data. If it works, it’ll be more widely available. http://rhysmorgan.co/2012/01/burzynski-morally-reprehensible

or of course, phrase it in your own way.

Also, if anyone knows of any way that could force Burzynski to present his data or hand it over to someone capable of writing it up. I’d appreciate your contact! Use the Contact Me link or tweet to me. Thanks.

Threats from The Burzynski Clinic

You probably haven’t heard of a man named Stanislaw Burzynski. He offers a treatment called antineoplaston therapy, which he claims can treat cancer, in a centre called the Burzynski Clinic in Houston, Texas. That’s quite a claim, but the Nobel Prize Committee does not need to convene quite yet, because this treatment has been in non-randomised clinical trials since its discovery by Burzynski some 34 years ago. Moreover, no randomised controlled trials showing the effectiveness of antineoplaston therapy have been published in peer reviewed scientific literature.

I first heard of Burzynski when a friend of mine tweeted about something called “Hope for Laura”, a campaign to raise the money to send this young mother from Kent to the Burzynski Clinic in the hope that they could cure her of her inoperable, terminal brain cancer. The campaign became big news after the well-meaning Rufus Hound tweeted about it.

Because of the campaign, I did a little bit more research into the treatment regime that Laura was hoping embark on and I learned about the lack of scientific evidence for the treatment.

There have been quite a few more campaigns similar to “Hope for Laura” to raise money to send more people to the Burzynski Clinic for the antineoplaston treatment. In one such campaign, Radiohead donated a guitar to raise money for one girl’s treatment.

Constantly, it was pointed out that the treatment was “not available on the NHS” – to many people this might have made it seem potentially wonderful and too expensive for the NHS, but my first reaction was that maybe it just didn’t work. Generally speaking, if something doesn’t work, it’s not provided by the NHS. (I say ‘generally speaking’ as disproven treatments such as homeopathy are still provided, unfortunately)

Eventually, I decided to write a rather scathing blog about Burzynski and the treatment, which you can find here. The thought of someone being promised an effective treatment when in fact, it’s at best unproven disgusts me. The blog went up on August 11th, 2011. A few comments were posted but it soon disappeared into obscurity again. Other friends of mine have written
blogs about the same subject – in particular, Keir Liddle of The 21st Floor and Jennifer Keane, a.k.a ZenBuffy. These particular blogs are excellent and go into a lot more detail about the false hope dilemma.

Orac, of Respectful Insolence, has gone into a lot of detail about Burzynski’s background and the antineoplaston therapy – it’s a blog that I strongly recommend you read.

Then, out of the blue, on the 3rd of November, I received an email from a man called Marc Stephens, claiming to represent the Burzynski Clinic. He was threatening to sue me for libel for my previous blog about the Burzynski Clinic.

Hello Rhys Morgan,

I represent Dr. Stanislaw Burzynski, Burzynski Clinic, and Burzynski Research Institute.
It has been brought to our attention that you have content on your website http://thewelshboyo.co.uk/2011/08/the-burzynski-clinic/ and on your Twitter account that is in violation of several state and federal laws.

This is a legal complaint regarding the your multiple twitter account posts, and article you posted online titled “The Burzynski Clinic dated August 28, 2011, by Rhys Morgan”. This correspondence constitutes a demand that you immediately cease and desist in your actions defaming and libeling my clients. Please allow this correspondence to serve as notice to you that you published libelous and defamatory information.

Please be advised that my clients consider the content of your postings to be legally actionable under numerous legal causes of action, including but not limited to: libel, defamation, and tortious interference with business contracts and business relationships.
The information you assert in your postings is factually incorrect and posted with either actual knowledge, or reckless disregard for its falsity, and with the actual and specific malice to injure my client’s business relationships in the community.

I am not sure if you are familiar with Defamation (Libel). If not, I will assist you.

What is Defamation (Libel)
Libel is a published or fixed form of defamation of character; a civil wrong that falsely impugns the reputation or character of a person or entity, opening the target up to public scorn or ridicule. Libel might appear in a magazine, book, newspaper, or in a radio or television broadcast. Signs, billboards or posters can also be mediums for libel. Online libel, or cyber libel takes electronic forms such as email, mailing lists, newsgroups, chat rooms, podcasts, vodcasts and Web pages. Although many citizens do not yet realize it, comments made to chat boards, newsgroups and even mailing lists are all forms of publication. Criticisms of companies or their goods can be a basis for libel charges if the poster misrepresents facts, or fails to qualify his or her post as opinion.

Every comment you made in your article is highly incorrect. I suggest you remove ALL references about my client on the internet in its entirety, and any other defamatory statement about my client immediately, or I will file suit against you.

I am not sure where you obtained your incorrect information, but you will be held liable for your statements. REMOVE ARTICLE IMMEDIATELY.

GOVERN YOURSELF ACCORDINGLY.

Sincerely,
Marc Stephens
Burzynski Clinic
9432 Katy Freeway
Houston, Texas 77055

As you may guess, this caused me to panic somewhat. The threat of being sued for libel is not an exciting prospect by any stretch of the imagination, even if you know that your piece is not libellous.
I sent him back this reply:

Dear Sir,

I am confirming I have read this email.

I am, however, at high school for the rest of today, but I will deal with this situation as soon as possible with the correct action.

I notice you have stated that some tweets are defamatory. I would appreciate you linking to them please so I can deal with them appropriately.

Sincerely,

Rhys Morgan

Unfortunately, when he found out that I was in school, his attitude changed.

He didn’t respond to my request that he linked to the allegedly defamatory tweets. His response came about half an hour later, clearly trying to silence me about Burzynski:

Hello Rhys,

Please forward the notice to your parents if you are actually in High School. This is a very serious matter. Although you have a right to freedom of speech, it is against the law to post slanderous or libelous statements. Because your statements have been read by third parties you are now also interfering with my clients business, and you are emotionally effecting Dr. Burzynski’s as well as his cancer patients around the world. Please remove all references about my client, as well as all libelous statements immediately. I have already copied your website and twitter account as
proof of the statements.

Once you remove your libelous statements, you will agree, that you immediately cease and desist from making any further unsupported, defamatory, libelous or harmful statements relating to my clients through any medium, including the Internet.
You are to remove existing statements, and are not to post, host, or make available any libelous, false or defamatory statements against my clients via the Internet, television, radio, print or any other forms of media. You shall not create any new alias, nor use any old alias, to post, host, or make available any statement regarding my client via the Internet, television, radio, print or any other forms of media. You will provide a public apology to Dr. Burzynski and his patients and post it on your websites, and social media sites.

Once removed, I can provide you with the correct information from the National Cancer Institute and several doctors who testified to the effectiveness of Antineoplastons. In addition, my client is FDA approved for Phase 3 clinical trials. You are reading lies and misunderstandings on the internet, which you are still liable for re-posting this information. I appreciate you contacting me to resolve this matter.

Regards,

Marc Stephens

I decided at this point to take the post down, not to admit liability or guilt, but so that Mr Stephens and I could hopefully discuss the supposed problems before deciding on an appropriate course of action. In my response, expecting him to know the obligation to follow pre-action protocol, I asked him to tell me the exact words his client,The Burzynski Clinic thought were libellous and why they were libellous.

Dear Sir

I am writing this email to inform you that I have taken the post in question down.
However, I state that this is not a confession of liability or acceptance of guilt. This has been taken down until we can agree on an acceptable course of action.
In response, I would like you to tell me exactly which words you think are defamatory and explain why and how they are defamatory. Similarly, I would like you to tell me exactly which tweets are defamatory and why they are defamatory.
I would like this by 6pm GMT on Monday, 7th November.

Sincerely,

Rhys Morgan

The next email I received from Mr Stephens seemed rather intimidatory, implying I considered myself “bigger than Google” and that if I did, I would spend life in the court room:

Hello Rhys,

I greatly appreciate you removing the articles and comments.

You are responsible for whatever you post online. You need to spend time understanding defamation laws if you want to start a career as a blogger. You can be sued for “Not Knowing”, its called Negligence. You can not interfere with business relationships and contracts. If you do not understand what you are doing I suggest you stop posting articles. Your “Opinion” can also get you sued. Look up the recent Google case in the UK. Google was sued and lost because their algorithm created “SCAM”, “FRAUD”, etc next to a business owner’s name. We also filed a complaint with Google and they had to remove the wording. If you think you are bigger than Google than enjoy life in the court room. There are many stories online that you can find that tell you the truth about Dr. Burzynski. If you are interested in learning I can guide you to the truth. I’ve watch some of your videos and you are a really smart guy. Use that intelligence in a positive way. Be careful online and good luck.

Thanks,

MARC

He seemed to have completely ignored my request to tell me the wording. He also seemed to think he’d managed to silence me, that I’d removed the post forever. However, this was only the 4th of November, one day into the time I’d given him to respond. And so I waited to see if I would receive anything explaining exactly which words he considered libellous and why they were libellous, in the opinion of The Burzynski Clinic. Out of courtesy, I even extended this deadline to the 14th of November. This deadline passed without any response.

Seeing as he’d not bothered to reply to me, I considered reposting the blog as well as an earlier version of this one. First though, I sent an email to the Burzynski Clinic’s corporate email address with a copy of the email thread between Marc Stephens and me, a copy of the original blog and an earlier version of this post. I wanted to know if they considered anything factually incorrect or not.

Dear Sir,

I attach an email (titled Email Thread.pdf) I have received from one Marc Stephens, who claims to represent you. As you can see from the attachment, he states that he represents you, and furthermore threatens me with libel proceedings in respect of material I posted on my blog.

I have carried out some internet research, and I have not been able to establish whether or not Mr. Stephens is a lawyer; certainly he does not appear to be a member of the California Bar nor the Texas Bar in the light of my visit to the California Bar Association’s and the State Bar of Texas’s websites. Please could you confirm for me whether he does in fact represent you and, if he does, on what basis he does represent you.

In the light of Mr. Stephen’s email I attach a copy of an article (titled Burzynski Blog Final.pdf) I propose to post on my blog as well as the original blog post (titled The Burzynski Clinic.pdf) which is currently offline. Please could you tell me within 7 days what, if any, of the blogs you object to, and, in particular, whether you believe any of the blogs to be factually untrue.

Yours faithfully,

Rhys Morgan

This seems to have been then forwarded on to Marc Stephens. He seemed rather irate and replied with this:

Rhys,

This is my THIRD AND FINAL WARNING to you.

Please convey this message to your entire Skeptic Network, which includes but not limited to, Ratbags.com, thetwentyfirstfloor, quackwatch, etc. I represent Dr. Burzynski, the Burzynski Clinic, and the Burzynski Research Institute. I’ve attached Azad Rastegar, and Renee Trimble from the Burzynski Clinic for your confirmation.

In the following weeks I will be giving authorization to local attorneys in multiple countries to pursue every defamation libel case online, including your online libelous statements. I suggest you shut down your entire online defamation campaign about Dr. Burzynski, and remove ALL recent or previous comments off the internet IMMEDIATELY. The minute you post any libelous comments online about my client I will pursue you and your parents/guardians To the Full Extent of the Law. I have no obligation to train you, or teach you, the meaning of defamation. Google it, or go to the library and research it.

This is a very serious matter. Please confirm your mailing address, which I have on record as (my address). If you do not cooperate an official legal complaint requesting punitive damages will be mailed to that address. I will be contacting your school as well to inform them of your illegal acts.

Again, this is my FINAL WARNING TO YOU.

Regards,

Marc Stephens

(Screen capture of Google Maps satellite view of my house)

This is harassment. First of all, he is the only one that thinks I have committed illegal acts. Contacting my school would be wholly inappropriate. Also, repeatedly sending me Google Maps screenshots of my house seems to me like he’s trying to intimidate me.

Of course, I wasn’t going to leave it there. He continues to bring unqualified threats against me. My response?

Dear Mr Stephens

You continue to threaten to bring a claim against me for defamation.

In the event that such a claim is brought in the USA I will rely upon the well-known authority of New York Times Co. v. Sullivan 376 U.S. 254. As you may be aware, this would require your client to show proof of actual malice before they could succeed in any libel claim. My postings are clearly not malicious. I believe in their truth, and I have sought to obtain a comment from your client, or else at least ascertain any objections to specific items within the posting. I am willing to listen. I would certainly reflect your client’s position if asked.

I think I come within the circumstances envisaged by the US Court of Appeals for the 7th Circuit in Underwager v Salter 22 F.3d 730 at [14]:

“…actual malice” has nothing in common with “ill will.” A person who concludes that a public figure is a knave may shout that conclusion from the mountain tops.”
If the claim is brought in the English courts, you ought to be aware that in the light of the well-known decisions of Rookes v Barnard [1964] AC 1129 and Broome v Cassell [1972] AC 1028 you will not be able to bring a claim for punitive damages on these facts. You also ought to follow the procedures set out in the Pre-Action Protocol for Defamation which require you to, amongst other things, set out precisely what your client objects to and why.

This is an issue which you have failed to address. I am not asking for a legal lecture from you. What I am asking for is clear information of what your client objects to, and why. As things stand, I have heard nothing substantive; I have just received threats.
This speaks volumes.

I would remind you and your client of another aspect of the well-known decision of Underwager v Salter, to which I refer above, which was expressly adopted by the Court of Appeal in England in the decision of Lord Chief Justice Judge in British

Chiropractic Association v Singh [2011] 1 WLR 133:
“[Plaintiffs] cannot, simply by filing suit and crying “character assassination!”, silence those who hold divergent views, no matter how adverse those views may be to plaintiffs’ interests. Scientific controversies must be settled by the methods of science rather than by the methods of litigation. … More papers, more discussion, better data, and more satisfactory models–not larger awards of damages–mark the path toward superior understanding of the world around us.”
I also note that you threaten to mention my “illegal acts” to my school.
Notwithstanding the fact that I have committed no “illegal acts”, the threat to involve my school is wholly inappropriate. If an English solicitor was to make such a threat they would be in breach of their professional obligations and subject to disciplinary proceedings by the SRA. Please inform me which US bar association you are a member of so that I can draw their attention to your threats.

Yours faithfully,

Rhys Morgan

Then, on Wednesday, 23rd September (Edited: Typo!) – November one day before the new deadline was up – I received an email from a law firm called Dozier Internet Law. They informed me they had been hired by the Burzynski Clinic to “investigate and address the issues regarding [my] blog” and respond to my questions in the email sent directly to the Burzynski Clinic.

They’ve not replied within the deadline I gave.

As such, I have reposted the original blog and posted this new blog detailing exactly what has happened to me.

It’s taken nearly a whole month to sort through this legal mess. I’m incredibly lucky that it hasn’t been even longer. I’ve also been very lucky to have help and advice from Alan Henness, Simon Singh and Robert Dougans, associate at Bryan Cave. The legal advice and help I’ve received has been invaluable and has brought me to where I am now – reposting the blog and telling the story of my legal threat.

Since the initial email, I have discovered others have received similar legal threats from Marc Stephens including Peter Bowditch of ratbags.com, who blogged about Burzynski eleven years ago, but is only now receiving this legal threat. Another blog threatened includes Quackometer.net from Andy Lewis, A.K.A Le Canard Noir. You can find a blog about his ordeal with Marc Stephens here:

I posted the blog so that patients, their friends and families would be aware of the whole story about Burzynski and his unproven therapy. I want them to be aware that the treatment seems to be in a constant cycle of trials generating unpublished results. As Dr Howard Ozer, director of the Allegheny Cancer Center in Philadelphia, said – it is scientific nonsense.

So in order to spread the word, I need your help. I would really appreciate it if you could do
the following two things:

Tweet about the Burzynski clinic. You could either write your own tweet or you could retweet my suggested tweet: RT @rhysmorgan Patients need to know the whole truth about Burzynski’s cancer treatment claims: http://rhysmorgan.co/2011/08/the-burzynski-clinic/

OR you could retweet this: RT @rhysmorgan Dr Burzynski does not want you to know the whole truth about his cancer treatments, which is why he tried to sue me http://rhysmorgan.co/2011/11/threats-from-the-burzynski-clinic

Add a link to this blog from your website so that it will increase the PageRank for this blog so that when patients search for Burzynski, they discover this blog as well as Dr Burzynski’s propaganda. This way, they can discover the whole truth and determine for themselves whether it’s worth investing in his treatment.

The Burzynski Clinic

The Burzynski Clinic is a clinic dedicated to treating cancer patients. It is based in Houston, Texas. It pioneers a treatment called antineoplaston therapy.

Except, this treatment isn’t pioneering. It isn’t effective. It does not work. And yet, the Burzynski Clinic continue to profit off it. I am sickened and appalled that cancer patients are being exploited.

The theory behind antineoplaston therapy is that certain peptides were apparently less prevalent in the blood of cancer patients than in healthy control subjects. This was first identified by Stanislaw Burzynski. He then hypothesised that replacing these missing peptides, which he renamed antineoplastons, would be a cure for cancer.

The Burzynski Clinic, which opened in 1977, has been in the news a couple of times recently, first in the case of Laura, a 24-year-old mum, of the Hope For Laura campaign, then more recently in another campaign to get Sean Lyne, a 19-year-old featured in an article in thejournal.ie, to the treatment centre in Houston for the €120,000 antineoplaston therapy.

The Burzynski Clinic promote themselves as offering an “[i]nnovative and cutting-edge Personalized Gene Targeted Cancer Therapy [with] [c]ustomized treatment for over 50 types of malignancies”. However, their antineoplaston treatment has been in clinical trials since it’s inception. Straight away, this shows an intellectual dishonesty on Burzynski’s part – promoting an experimental treatment as if it were effective.

Burzynski’s published research has been criticised by oncologists and scientists alike. Dr Howard Ozer, director of the Allegheny Cancer Center in Philadelphia, called the research “scientific nonsense”. Independent studies failed to replicate Burzynski’s results, suggesting there may be a strong bias in Burzynski’s research. The FDA have not approved the treatment for any diseases. A 2004 analysis of evidence for a number of alternative treatments for cancer, including Burzynski’s own antineoplaston therapy, said that “The label “unproven” is inappropriate for such therapies; it is time to assert that many alternative cancer therapies have been “disproven.”” In short, it’s quackery – ineffective treatment promoted as effective and sold for a very high price.

I hate the idea of taking away someone’s last hope. Even though this is false hope, I still hate taking it away. But imagine if this was your family member, being misled and dragged halfway across the world, being taken away from the majority of their family to spend the last bit of their life being injected with an ineffective treatment every four hours. I would be fuming if this was anyone close to me. The false hope dilemma has been covered before by both Keir Liddle of The 21st Floor and Jennifer Keane, a.k.a ZenBuffy.

When the Burzynski Clinic is in the news, it’s always described as providing a treatment that is unavailable on the NHS. The main reason for this is that it’s in clinical trials. The 17 trials started by Burzynski began in the 1990s and have an estimated end date of 31st December 2011. The other, probably more important reason is that in small studies, it hasn’t proven to be effective. Burzynski’s own research and findings haven’t been replicated.

Burzynski took what was a hypothesis and ran with it. And ran with it. And ran with it some more. He has relentlessly promoted his “investigational” therapy to those who are most vulnerable – those with incurable diseases. This court document states

The district court granted summary judgment for the plaintiff/appellee, the Northwest Laundry and Dry Cleaners Health & Welfare Trust Fund, an ERISA health insurance fund, after finding that the defendant/appellant, 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.

It is for all these reasons above that I take no issue with calling Stanislaw Burzynski a quack and a fraud.

Can a drug be classified as “not vital”?

The Daily Mail has put out a piece that reads like a press release. I suppose that’s like a lot of their web content.
However, this one attracted my attention as it was about animal testing.
It is based upon an investigation by the British Union for the Abolition of Vivisection, titled “The Ugly Truth”, about animal experiments on rabbits. These rabbits were being used for shock horror testing side effects of antibiotics, blood fillers and saline! Oh, the humanity!
BUAV complain that “the lab inflicted ‘appalling suffering’ on thousands of animals in tests that [were] ‘crude, archaic and extremely cruel’.” adding that the bunnies were “used over and over again for months at a time.”
However, this is not what this shall focus on. No, it was one of the nutty comments on the press release… I mean “article” that wound me up to no end.

Testing for vital drugs is, I suppose, ok. Testing for non-vital drugs or beauty products should be outlawed and anyone found doing such tests should eb subjected to it themselves.
– Ex-pat of Adelaide, Adelaide Australia, 17/4/2011 15:11

What?!
How can one judge whether a drug is vital or not? A drug may not appear vital to some, but absolutely, undeniably necessary for someone else.

Let’s take an example.

For me, my medicines are vital. They allow me to function on a day to day basis without fear of excruciating abdominal pain, very unpleasant bowel movements and extreme fatigue.
However, I could still “live” without them. My life is not in immediate danger without them.
Therefore, I’m sure that in some people’s eyes they would class as non-vital.
On the flip side from my situation, there are people for who these drugs would be classed as absolutely vital in anyone’s eyes – people with severe Crohn’s disease. People who could quite plausibly die without treatment.
Therefore, the animal testing would have to be done on these vital drugs, even in the eyes of people like Ex-pat of Adelaide

The main issue comes from the definition of vital. Does it include people who would not function on a daily basis without the drug or is it strictly limited to life and death situations? Could it include someone with a headache that stops them doing whatever they want for an hour or two?

Another reason that this is an irresponsibly stupid thing to say is that we do not know every single disease each drug will treat when they are developed and therefore, cannot know how vital they may be. Take the drug ibuprofen. Originally developed as a painkiller, it was realised that it could be used to treat patent ductus arteriosus – a condition where a newborn baby’s ductus arteriosus fails to close after birth. This condition can lead to heart failure. Something not as apparently vital in the first instance has become something which can save lives. Ibuprofen is not the only drug this has happened with and I doubt it will be the last.

I suppose what I’m trying to say is that you could make the case for any drugs being vital.
Whether it be aspirin, methotrexate, infliximab or zidovudine – these drugs have been vital to someone, whether it be to treat a headache or stop HIV taking a greater hold in their body.

For all these reasons, and undoubtedly more, it is silly and unethical to call a drug not vital and therefore refuse to do testing on it.

First ASA Win!

Yay! My first ASA win is no longer under “embargo”. I’ve decided that, for the sheer hell of it, I will post a copy of my complaint about this website. Check the Freezepages to see what they were and the non-Freezepage links to see what they are now.

Dear Sir/Madam,

I am writing to you to complain about the website: http://www.miraclemineralsupplement.org.uk/ (Backup link: http://www.freezepage.com/1298938494WVSNYDNBPV)
I recorded these details at 00:13 on the 1st March, 2011.
The only details for the company that I can find are it’s phone number and email address, which are as follows:
Phone number: 0161 870 8058
1. The name “Miracle Mineral Supplement” implies that it is a product supplementing the body, as something the body requires. I do not believe that the producer, MiracleMineralSupplement.org.uk, has any evidence to support this claim.
2. The front page of the website makes the claim:
“Miracle Mineral Supplement is a powerful substance which has been shown to greatly assist in the healing process.”
I doubt that MiracleMineralSupplement.org.uk have any evidence to support the claim that Miracle Mineral Supplement has been shown to “greatly assist in the healing process.”
“MMS was invented by Jim Humble and has spent more than 8 years of testing around the world of people who suffer from different conditions such as malaria, HIV and cancer. There are many studies that can be found on the internet showing the result of using MMS and from people’s testimonials of using the product and for the most part the results have been extremely positive.”
This clearly implies that MMS is suitable for treating conditions such as malaria, HIV and cancer. I doubt that MiracleMineralSupplement.org.uk have any evidence to back up these claims.
4. On this page – http://www.miraclemineralsupplement.org.uk/what-can-mms-be-used-for (Backup link: http://www.freezepage.com/1298938674AFVQCKKNKG)- of the website, there is a long list of claims for what “MMS can be used for”. The conditions that the website claims MMS can treat are as follows:
  1. Acne
  2. Abscessed Teeth
  3. Asthma
  4. Burns
  5. Most Cancers
  6. Cysts
  7. Colds, Flu
  8. Diabetes
  9. Dandruff
  10. Gingivitis
  11. Hepatitis A, B, C
  12. Heartburn
  13. Insect bites
  14. Malaria
  15. Pneumonia
  16. Sore throats
  17. Sebaceous
  18. Urinary Tract Infections
  19. Warts
  20. Weight Loss
This is a long list of very different conditions. I very strongly doubt that MiracleMineralSupplement.org.uk have any evidence to verify any of these claims of conditions.
I also make the point that it is illegal for anyone but registered medical and scientific personnel to claim to treat or cure cancer under Cancer Act 1939. I doubt that MiracleMineralSupplement.org.uk are registered medical or scientific personnel, and therefore put to you that this website is both misleading and illegal.
5. The website contains a testimonial entitled “MMS Testimonial – One Man’s Story” which can be found here http://www.miraclemineralsupplement.org.uk/mms-testimonial-one-mans-story (Backup link: http://www.freezepage.com/1298938724GLMUOYKGKI)
I have included a copy of the testimonial:
“I have been using MMS now for seven weeks, and would like to relate the following improvements in my health. My lifelong battle with REFLUX/HEARTBURN/ACID GUT seems to be over. That all disappeared after four days and hasn’t come back. (My system succumbed to beer and chips and other assorted rubbish one day, but a scheduled daily dose of MMS knocked it on the head within a few minutes).My lifelong weakness of too much mucus in the nose and throat at most times has been reduced noticeably to a “no problem” level. I now get an incredible good night’s sleep every night, dream vividly, and my wife says my snoring is less. My lifelong weakness to catching the common colds and being very susceptible to any virus or flu going around seems to be over. During the last seven weeks I deliberately exposed myself to catch a cold several times, I did get it, and knocked it on the head within hours (only experienced a few sneezes, and slight runny nose) then I was exposed to a severe flu virus, after two days I had a ticklish throat and a few sneezes, here we go I thought. I took a double dose of Miracle Mineral Supplement before going to bed that night and woke up the next day as right as rain. I expect my cholesterol count to have lowered, and my fear of cancer from my enlarged prostrate has subsided. Many other minor problems were experienced during the last seven weeks, and it is enough for me to say I AM HOOKED ON THE STUFF FOR THE REST OF MY LIFE”.
Statements in testimonials need to also be backed up by evidence. This testimonial strongly implies that MMS can help with all of the issues mentioned.
I doubt that MiracleMineralSupplement.org.uk can substantiate the claims made in this testimonial that MMS is effective in treating:
  • Reflux/Heartburn/Acid Gut (also known as acid reflux)
  • The issue of “too much mucus in the nose and throat”
  • Snoring
  • Common colds
  • Viruses
  • Flus
  • High cholesterol
  • Cancer risk, due to enlarged prostate
I am complaining as a concerned member of the public and wish to confirm I have no commercial interest.
Many thanks,

Rhys Morgan

MMS on eBay

If you remember back to the days of old – when Bleachgate was young and so was I… well, when I was younger than I am now…

One of the early victories of the Bleachgate campaign was eBay removing all the Miracle Mineral Solution items from it’s website. This came after the FSA’s warning.

Well, it’s not lasted as long as we might have hoped.

http://shop.ebay.co.uk/i.html?_nkw=miracle+mineral&_sacat=0&_odkw=miracle+minera&_osacat=0&_trksid=p3286.c0.m270.l1313

and

http://shop.ebay.co.uk/i.html?_nkw=sodium+chlorite&_sacat=0&_odkw=miracle+mineral&_osacat=0&_trksid=p3286.c0.m270.l1313

are some of the items currently on eBay.

This is a bad thing, especially when you see that some people have bought them.

So, my request to you is to report these items to eBay under the

“Prohibited (banned) items” – “Other prohibited (banned) items” – “Prohibited foods” sub-subsection.

This may seem a rather odd choice.

But cast your minds back to the Food Standards Agency warning. Because it is advertised as a supplement, then it is classified as a food, which is why the FSA were able to rule and warn against it.

When you report it, please refer them to the Food Standards Agency warning too, which you can find here: http://www.food.gov.uk/news/newsarchive/2010/sep/mms

Your help would be much appreciated!

ThinkCon: Can You Make A Difference?

Last night (19th March, 2011) was ThinkCon, an evening of skeptical goodness.

The event was titled: “Can You Make A Difference?” and the speakers all gave their experiences about how they have made a difference.

The evening was chaired by Gia Milinovich and the speakers were:

  • Me. I was the first person to speak. I talked about my experiences on CrohnsForum.com, how it very quickly turned sour when I realised there were people promoting Miracle Mineral Solution (read previous posts tagged Bleachgate for the rest of the story!) and what I did to tackle it after being permenantly banned from the forum.
  • Michael Marshall, who talked about his experience organising The 1023 Campaign and what it achieved.
  • Chris Smith, who discussed setting up The Naked Scientists radio program/podcast, how far reaching it has been and how it has promoted science in the general public
  • David Colquhoun, who told us about his use of internet campaigning when a merger between Imperial College London and University College London was proposed and the outcomes, before talking about setting up a blog and how it can make a difference.
  • Síle Lane, public liason for Sense about Science, came to talk about the Libel Reform campaign, about how it was organised, why so many companies supported it and the events in meatspace they organised to raise support. Finally, she discussed the recent victory with the draft Defamation Bill.

The event was a lot of fun and very informative. I learned a lot from the other speakers. It was particularly special for me, because it was my very first public speech. I hope you enjoyed it, if you came.

The opening question of “Can You Make A Difference?” was very clearly answered by the talks – YES! You can make a difference. Writing letters to regulatory agencies, tweeting and blogging are all incredible tools to help to make a difference.

I helped to debunk Miracle Mineral Solution and get it warned about by national and international health agencies.

Michael Marshall along with the 1023 gang drew a lot of public attention to the issues with homeopathy (like, it doesn’t work!) and got governmental agencies around the world looking into it, with many withdrawing support for it.

Chris Smith has helped to engage the public with science with his radio show, giving many people access to kitchen science experiments to show people how science works and again, engage them in the process of science.

David Colquhoun has helped expose many ridiculous “BSc” degrees in quackery and blogged about them, causing many to be shut down. He has used internet campaigning to help argue the case against a potentially catastrophic merger between UCL and Imperial.

Síle Lane and Sense about Science have helped the public realise the major problems with British Libel Law and how damaging it is and helped communicate how science works and what is trustworthy science to patient support groups.

Whilst the talks and panel discussion were all very interesting and informative to listen to, they were not my favourite part of the evening. Nor was sitting down over a drink (Coca Cola, don’t worry!) and chatting to people at the end about the evening. My favourite and most inspiring part of the evening was when we made a difference in the first break.

During the first break, a lady approached me and told me she’d used MMS every day for five years, after a friend had recommended it to her. She bought and took it without realising what is was. She had no idea that I’d be talking about it tonight. She asked me to explain to her exactly what it was again. I went through what it was. She realised what she’d been taking was an industrial bleach, injurious to health, and told me “Thank you so much for telling me this. I had no idea. From now, I will stop taking it and will tell all my friends about what it is.”

Proof that we can make a difference.

We made a difference last night.

Ambiguity over alternative medicine funding in Wales

On the 1st of December 2010, I sent Freedom of Information Act requests to all seven of the Local Health Boards in Wales;

  • Cardiff and Vale University Health Board
  • Cwm Taf Local Health Board
  • Aneurin Bevan Local Health Board
  • Hywel Dda Local Health Board
  • Powys Teaching Local Health Board
  • Betsi Cadwaladr Local Health Board
  • Abertawe Bro Morgannwg University Health Board

I posed these questions to them:

“Does your Health Board fund the use of any complementary or alternative medicine?”

and

“Please provide me with details of which complementary or alternative medicines you fund. How much is spent on them per annum?”

Of these seven health boards, three provided me with concrete information about whether they funded complementary/alternative medicines and if so, how much was spent on them. Aneurin Bevan Local Health Board released detailed information about which CAMs they funded and how much was spent on them. I shall come back to them later.

Two of the health boards, Powys Teaching LHB and Cwm Taf LHB, told me “[This health board] does not fund the use of any complementary or alternative medicines.”

The remaining four health boards were a little more ambiguous with their responses. Repeatedly, I was informed that information about the funding was not held by the health board.

Betsi Cadwaladr LHB responded by saying “Unfortunately we do not hold this information as the Health Board does not fund or provide complementary of alternative medicine.” Hywel Dda LHB were similarly ambiguous in their response – “I regret to inform you that the information you requested is not held by this organisation. The Health Board does not support the prescribing of complementary/alternative medicines.”

On the face, this might seem like a good thing – they’re not funding or don’t support the prescribing of these unproven therapies. However, upon re-reading of these responses, both responses start; the information simply isn’t held by the health boards. Therefore, there could quite easily be funding for CAM therapies that they just don’t know about. I would have liked to have thought that the health boards know exactly what their money is being spent on.

Back to Aneurin Bevan LHB, who provided me with detailed information on which therapies they fund. They did inform me that whilst they do not have formal agreements in place for specific funding of complementary or alternative medicines, GPs “may prescribe any medication under their terms of service that have been approved by the Department of Health. They also told me that it “is not possible to identify all alternative medicines prescribed by GPs due to the way in which the prescribing data is captured.” However, they undertook an analysis of information that they did have. Here is that information:

Nutritional Supplements

Glucosamine preparations – £121,000

Melatonin – £37,000

VSL #3 Probiotic Food Supplement – £4,000

Homeopathic preparations

Abrotanum Oral Drops – £156

“Herbals”

Nytol Herbal Tablets – £121

Kalms Herbal Sedative – £7

St. John’s Wort – £41

In total, £162,325 is being wasted on treatments with little or no evidence base to support their use.

Glucosamine supplements have been studied to no positive avail. A BMJ meta-analysis of 10 trials concluded “Compared with placebo, glucosamine, chondroitin, and their combination do not reduce joint pain or have an impact on narrowing of joint space. Health authorities and health insurers should not cover the costs of these preparations, and new prescriptions to patients who have not received treatment should be discouraged.”

Evidence for St. John’s Wort is ambiguous. The Cochrane Collaboration reviewed the evidence for it and concluded “Overall, the St. John’s wort extracts tested in the trials were superior to placebo, similarly effective as standard antidepressants, and had fewer side effects than standard antidepressants. However, findings were more favourable to St. John’s wort extracts in studies from German-speaking countries where these products have a long tradition and are often prescribed by physicians, while in studies from other countries St. John’s wort extracts seemed less effective.” So there could be a cultural bias leading to more positive results for it.

The final two health boards in Wales are Cardiff and Vale University Health Board and Abertawe Bro Morgannwg University Health Board. Both fund complementary and alternative medicines, but neither provided me with details about how much money is spent on them, even after clarification from myself.

Cardiff and Vale UHB provide “limited complementary therapy modalities … for example Acupuncture as part of physiotherapy management to provide pain relief and massage techniques in the mental health service.” However, because this is provided as a package of care as opposed to stand alone therapies and no dedicated funding is provided, they cannot provide me with any details about funding.

Abertawe Bro Morgannwyg UHB informed me that they provide acupuncture and “this is provided within the physiotherapy service. This is part of the whole package of treatment following assessment by the physiotherapists. There are no separate acupuncture clinics and referrals for acupuncture alone are not accepted. Therefore as stated in our original response there is no ‘dedicated funding’ for complementary therapies and therefore we would not hold separate financial information for this.”

To conclude, it appears that the main problem with the health boards is the way in which prescribing data is captured. Aneurin Bevan LHB said it themselves – “It is not possible to identify all alternative medicines prescribed by GPs due to the way in which the prescribing data is captured.” Perhaps there needs to be a new method of capturing prescription data, to ensure that this information doesn’t fall through the cracks as it appears to be doing now.