I have serious concerns about the Welsh Baccalaureate qualification. I also have serious concerns about my school requesting that I don’t criticise the Welsh Baccalaureate. This isn’t the first time they’ve attempted to stifle my freedom of speech – that honour goes to the Jesus and Mo issue. However, I’m going to be talking about the Welsh Baccalaureate in this post, not the freedom of speech problem – that’s a discussion for another day (February 11th, if you didn’t already know!)

One of the main problems with the Welsh Bac is that it is not even a proper baccalaureate. In a proper baccalaureate, you are required to study maths, English, science, and a language. With the Welsh Bac, there is no requirement to include science content. The language component is also weak. The people who developed the first draft of the Welsh Bac called the language component “a waste of time”.

In my experience, the entire course is weak – the maths section is nothing more than some scale drawings and basic calculations, and the ICT component is a watered down ICT course involving tedious activities such as capturing screenshots of every little thing you do, using Microsoft Office, laying out an article correctly, using Microsoft Office (Yes, the reliance on Microsoft Office really grinds my gears. There’s better, cheaper software out there!)

Another massive problem with the Welsh Baccalaureate is that, whilst it may be an additional 120 UCAS points, most universities do not consider it the A grade at A level that you are promised when embarking on the course. Cardiff University will only consider it a B grade at A level (personally, I think they’re being very generous), the University of Glamorgan will reduce the entry requirements from 3 Bs at A level to 2Bs and the Welsh Bac for their nursing course, and Aberystwyth Uni have stated that they will consider the Welsh Bac as a “valuable qualification in its own right … [and] we may be prepared to give a slightly reduced offer to Welsh Baccalaureate candidates, provided any course requirements are met.” They haven’t stated exactly how they’d ‘slightly reduce’ the offers though. Other universities such as Imperial College, for the BSc Medical Sciences course, provide a list of alternative qualifications. This doesn’t even list the Welsh Bac.

Most disturbing of all are the comments from Jeff Jones, chair of the WJEC when they bid for the Welsh Bac. He warned student off taking the Bac, saying “No wonder Russell Group universities who can get students from England with four A stars are not that interested. If I were a student I wouldn’t touch it with a barge pole – even though I played a small part when I was chair of the WJEC in its development.” Mr Jones also said it’s “really an A level with a load of nonsense added on. It isn’t a proper Bac where students at 18 would still be required to study maths, English, a science and a language, not meaningless Mickey Mouse additions. What the heck is the use of ‘Wales and the World’ for a start?” He admitted that “Both the then chief executive and I discussed whether to bid for the pilot. We both agreed that it looked like nonsense but I argued that we needed the money and in any case, we had to bid because we were the Welsh exam board.” So there you have it – even the ex-head of the WJEC wouldn’t take the Welsh Baccalaureate qualification.

I don’t think it’s fair that we have no choice in doing the Bac. I’d much rather spend the time doing work towards the qualifications that actually matter and will affect my chances of into uni – my A levels. I hope my school, if they read this, will understand my frustration at being told not to criticise something that is in dire need of people speaking out to criticise it. I’d also like to find out how much money they’re receiving to offer the course and how that money is being spent.

In order to show solidarity for their cause, I uploaded the image to Facebook and set it as my profile picture for about a week. I then changed back to another photo and went on my usual life.

Until today.
Someone who is a Muslim discovered the picture and found it offensive. He politely requested I remove the image -

“…just a kind request to either hide it or completely delete the picture… “

- a request I declined because I do not follow Islamic scripture or rules. This quickly descended into a bit of a debate as to whether I should remove the photo or not before he reposted the picture onto his Facebook wall with the comment

So THIS is what our little “Journalist” is uploading… And he claims it’s “freedom of speech” ok Rhys Morgan.. We’ll see

That’s when the strawman arguments, ignorance and threats really began.

As I’ve discussed in a previous post, your race isn’t the same thing as your religion. This is something I mistakenly thought was obvious to everyone. So posting an image showing Jesus and Muhammed sitting down with an undisclosed drink in a bar is not racist. Calling me a racist for posting an image that has nothing to do with someone’s race is completely at odds with logic and reality. Hell, this particular image wasn’t even satirising religion, unlike pretty much all other Jesus and Mo comics.

However, this didn’t stop them!

What a fucking prick i upload a pic of spongebob and thats ‘racist’ watch no one say nothinf, if i call a gay person gay and said freedom of speech everyone would go mad, so rhys u can u can fuck off if u think your gettig away with this u racist cunt

Doyle is a fuckin G this prick takes it too far i swear he was being racist before too

I don’t understand there next political words but as far as im concerned, I find this offensive, racist and disrespectful!!

Just saying ..calling someone gay don’t go against any religion, drawing the prophet muhammad(pbuh) does go against Islam, so show some respect you fucker, noone cares about your big paragraph ..end of the day, you’re being racist and tryna make it sound like you aint.

Ok you aint Muslim, then keep your racist thoughts to yourself you loser

rhys i dont know what i find worse your stupidityand ignorance to the fact that offending someones religion is racist, or your shit drawing skills.

wth ur the iggnorant 1 and disrespectful 1 we have faith sumthing that u lack and dont u dare talk about our religion u racist and yeah we are passionate about it so leave it alone and delete it as its getting pathetic

Just to clarify, I didn’t draw the comic. And the reference to me being racist before? That was for not agreeing that a god exists.

Someone also decided to pick up on the fact that I am a skeptic and therefore I am a solipsist.

Skepticism is basically being hipster, but with everything bar fashion and music. Skepticism brings about a theory that the world doesn’t exist, woop, go skepticism

Complete and utter misrepresentation of the ideology of skepticism. What was described there is solipsism, a belief I don’t agree with or have ever identified with. However, on pointing out I wasn’t a solipsist and that the UCL ASHS being asked to remove it was an infringement of their freedom of expression, all sorts of odd ideas came pouring through the cracks in their arguments (mainly consisting of “YOU RACIST. I’M OFFENDED. REMOVE THIS.”)

Empiricism, endorsed by famous skeptic, David Hume, lead people to solipcism (little Rhysy knows a little bit). Thanks to Hume’s skepticism, we have solipcism.

Hipster? Being skeptical is just going against the flows of then norm. Pretty damn hipster

I failed to grasp the leap of logic this made. One person apparently went from being skeptical to solipsistic, therefore all skeptics are solipsists? Doesn’t quite make sense to me. But again, this didn’t stop them trying to argue that I was wrong.

Ah the old “fact-value gap”. I didn’t imply all skeptics (different from skepticism) were solipsists. I said skepticism brings it about

Hume’s skepticism brought about solipsism, the skeptic himself did not

At this point, I was just utterly baffled by any point being made here so I clarified my position as a skeptic.

Ashar, I still fail to understand what the fuck solipsism has to do with this?
I’m an evidence based skeptic – if there’s not evidence for something (most of herbal medicine, religion, psychics and mediums) I won’t believe it.
As I’ve explained, I reposted the photo to show support for a group being censored.

Knowing that he had nowhere to go with this, he then started the strawman arguments.

Guys! Let’s endorse Hitler’s ideology, but slightly less radical!

Woo go anti-semitism, hey Rhys? Hey, lets do it eh, it’s not racism, it’s a protest against their curly hair

Freedom of Expression eh?

Let’s kick out Hindus and Sikhs, I never really liked them. But lets do it to show that they’re ignorant of their own faith and the country that they live in

Others requested I delete the photo. Again, I said no. I’m not having my freedom of expression impinged upon because some people take offense to an image. They didn’t understand that basically demanding I remove it was an infringement on my freedom of expression.

rhys what has freedom of expression got to do with posting this picture!

Neither do I really, posting a provokative photo, against a people who has done absolutely nothing to you. Just go ahead and offend them, is this the values of this country? Fuck everyone else, it’s just me that matters! Freedom of expression!

Freedom of speech! Woo!! I’m saying that rhys likes to pleasure frogs in his bedroom and charges ppl 75p to watch! Freedom of speech! Woo

Yeh theres freedom of speech and taking the piss your just taking the piss, kindly fuck off?you make me laugh

rhys ur in a battle u can not win-u have no believe no body care but you have no right to put ur freedom of speech bullshit upon the rest of us-u dnt have to be a muslim we dnt c are bt DO NOT disrespect us and say it was to make a point as it is just pure iggnorant recism

This was all interweaved with either veiled threats of violence or outright threats

well we’ll see tomorrow…

ima burn your house down

Yeah and i could break your fukin nose and because im a dick i might:)

…rhys u can u can fuck off if u think your gettig away with this u racist cunt

All throughout I was called ignorant, faithless (as if this was a bad thing), pathetic, disrespectful etc etc.

Hilarious how the members of the “religion of peace” will threaten violence if you don’t follow their rules, eh?

Oh, but don’t think this open display of ignorance and irony is limited to Muslims. One only has to look across the pond to the case of Jessica Ahlquist (my new hero) to see even worse threats issued by Christians, all because she wanted the US Constitution and the separation of church and state to be upheld. The irony of the all-loving religious folk…

(I wish to stress that I don’t in any way think that all religious people are insufferable idiots without a dash of logic or reason. Far from it. The majority of them just get on with their lives. It the minority who take it too far and tarnish the rest with the same brush, which is entirely unfair.)

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.

Just received this in my inbox. Found it rather amusing, so thought I might as well post it.

Name: Russ Moores

Email: [REDACTED]

Comments: I just wanted to let you know i just wasted an hour of my life reading your blog.
You are messed a messed up juvenile with a big mouth. Perhaps maturity will serve you well and help you pass this period of adolescence and wasted energy.
I wish you well in your search for perfect health and suggest you allow others to do the same. Try and let go of your bitterness and stop looking for attention from negativity.
Try and be more positive and less of a drama queen. Your negative opinions serve nobody well, including you.

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.

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.

I live with a chronic condition.  It is called Crohn’s disease, a disease which affects the bowel and can affect other parts of the digestive system.  It is an autoimmune disease, but we don’t know what causes it yet.  It is lifelong and incurable. It is only treatable. Its symptoms include diarrhoea, fatigue and abdominal pains.

I’m one of the lucky ones in that I am on a treatment that is working and has put the Crohn’s in remission, called infliximab. Infliximab is a drug that binds to a chemical messenger called tumour necrosis factor alpha (TNFα). There are only a few of other drugs that do this. Luckily, I am now starting to live a relatively normal life. I am a teenage boy doing normal teenage things – going out with friends, playing video games and eating a lot of food (something I couldn’t do when the Crohn’s wasn’t in remission!) But, in the past couple of years, I have had to do a lot of growing up, simply to try and cope with such a diagnosis.

Future treatments and potential cures are in development. I hope that within my lifetime that a cure will be found, however unlikely this is. I hope that many more treatments are developed to put people in remission for a long time, to prevent them suffering.

However, there will come a day when infliximab stops working. I wake up every morning hoping that today will not be that day. There will come a day where the next treatment stops working and any other treatments stop working and, my god, I do not want those days to come soon. I am young and yet I face a life of dangerous drugs, clinical trials and surgery to remove parts of my bowel ahead of me. And I wish I didn’t have to suffer with it.

I am depressed and I have general anxiety problems.

I was diagnosed with depression earlier this year. I’d been suffering with symptoms for a while – feeling sad most of the time, self-loathing, insomnia. These had been affecting me for years on and off. Only recently did I have a seriously distressing depressive episode. I decided to go to the GP to tell them about it and see if they could offer any help.

I sat down with him and told him that I thought I was depressed. I explained how I’d been feeling and how it had been affecting me. Straight away, he agreed that I was depressed. He asked me to fill in a questionnaire about how I’d been feeling. I came out as being moderately to severely depressed.

The GP told me that as I was under 18, he wasn’t supposed to prescribe me anti-depressants. Instead, I was to be referred to the psychiatrist as part of the CAMHS (Child and Adolescent Mental Health Services).

I waited for a while. A referral letter didn’t come through.

I was getting quite distressed by this.

Eventually, I went to see my gastroenterologist about my Crohn’s disease. I told him about the depression. He referred me to see a clinical psychologist who worked with the gastroenterology department in the UHW. I waited for a referral.

Not too long after, the referral letter came through the door and I went to see the clinical psychologist. We talked over how I’d been feeling. We started looking over problems in the past that may have contributed. We discussed possible treatment options in a second appointment the next week.

After waiting close to one and a half months from the original GP appointment, I decided to book another appointment. I saw one of the main GPs in the surgery. I sat down and told him about how I’d been feeling. He also pulled up the results from the questionnaire that I did with the other GP. He could see that I’d been waiting for a while for the CAMHS appointment. He also told me that it wasn’t protocol to prescribe anti-depressants to under 18s, but that he would speak to his colleagues to see what could be done. About a week later, I got a call back telling me that they were willing to prescribe me citalopram, an antidepressant, and some zopiclone to help with the insomnia in the short term. I went back to the GP and picked up the prescription.

Day to day, I hadn’t really been feeling great. I was still tired from the insomnia keeping me up and still having to get up early for school. This, in turn, didn’t help with my mood.

I started on the citalopram at a dose of 20mg a day. For the first few weeks, I didn’t feel much different. However, after about a month of starting them, my mood started getting better. My sleeping pattern was also normalising. The appointments with my clinical psychologist were going well. Things were starting to look up for me.

Unfortunately, I started having problems with really bad days. I had one seemingly random period of about three days where I’d been getting quite distressed by my depression. This carried on. I saw the GP again and upped my dose to 30mg a day.

I started feeling great soon after this. Day to day I was feeling much better. This continued for a while.

However, again, my good state started collapsing down around me. I was suffering with anxiety. It started to become somewhat disabling. I was stopping being able to talk to people, feeling really anxious about going out. It was distressing and didn’t help with the depression at all. In fact, it was almost as if I was back to step one.

I finally had an appointment to see the psychiatrist. I told him about the depression, my history, schooling etc. He also very quickly picked up on my anxiety. As I sat there talking to him, he noticed the nail picking – my main anxious tic. He told me that he wanted to review me every three months and I was on my way.

I went back to the GP last week after a trip abroad to Cyprus. The trip is when my anxiety really started getting to me. If it was bad before, it was getting out of hand now. I just sat around on my iPad for the entirety of the holiday. I didn’t want to go round checking to see if there were people my age to make friends with or anything. I sat there with my iPad – my barrier.

My GP upped my citalopram dose again to 40mg a day and put me on propranolol, a beta blocker drug that . I tried it out at home to see if the background anxiety would begin to fade. It did. The random humming that only I noticed and the subconscious desire to pick my nail. They went much more quickly than they’d started.

However, disaster struck a couple of days ago. I had a suspected allergic reaction to it. Before I’d even had a chance to use it in a situation where I would benefit from it’s use! I called the GP the next day to be put on the emergency list, given that the patient information leaflet told me to see a doctor as soon as possible. Yes, my dad is a doctor, but it’s not quite the same!

I saw one of the main GPs in the surgery who told me that it was probably best I stopped the propranolol. We talked briefly about the anxiety and how it’d been affecting me. She decided to prescribe me some diazepam, a benzodiazepine, 2mg a day to start off with.

This is my story so far.

At the moment, I’m feeling good. I am tolerating the diazepam well, but it’s early days. I have an appointment to see my regular GP on the 19th of August, so not too long. Hopefully, I’ll be put up to the normal dose of diazepam. I hope that this is the treatment for me, even though it is a short term solution. I hope it will bring me out of this anxious state long enough to be able to deal with the underlying problems. That’s what I think the citalopram did. It brought me out of the depressive state to see the underlying anxiety more.

Talking about mental illness is not an easy thing to do. It’s still seen as a ‘taboo’ subject – something you wouldn’t mention in the same way you’d mention a broken arm, cancer or other physical illnesses. I hope by talking about my experiences, it will encourage others to know that help is out there. People are willing to listen and help.

The only way to break the taboo of mental illness is by talking about it more.