In doing so, the reports say she revealed that that her own son was autistic. She wants to raise awareness of autism and hoped the charity, which she is a patron of, would use the money to help other parents.

But the Quackometer’s alarm went off. The claims being made looked very questionable. Just exactly who are IPAN and what do they do?

For a start, IPAN do not appear to be targeting children with a diagnosis of autism. Instead, they claim that they can spot certain behaviours in 3 month old babies that may be a precursor to autism. They claim that if left untreated, autism will develop. They claim that they use a ‘psychodynamic’ method “that deals exclusively with emotions’ to correct these problems. They claim that they want parents to know that ‘autism is preventable’.

These are extraordinary claims and I see no good reason to believe they are true.

Autism is a range of developmental problems characterised by poor development in social interaction, communication and behaviour. In order for a diagnosis to be made, a child needs to get to the stages where a child’s development can be seen to be slower than normal. Three months is well before the age when a doctor would want to consider a diagnosis. Diagnosis is not made until a child is at least 2 or 3 years old. Children do vary in their rate of development, and development can slow down and speed up. Claiming that definitive signs can be spotted at a very early stage is highly questionable.

The treatments offered by IPAN also appear to be away from mainstream thought. IPAN links to another organisation at www.infantmentalhealth.com called the Parent Infant Clinic. Here, babies as young as 2 months, are treated with psychotherapy by practitioners “specializing in the emotional and mental health of infants”. The Parent Infant Clinic says it uses psychoanalytic tools to “gives us the ability to understand emotions and family dynamics”.

Psychotherapy is common in France as a treatment for autism. Sometime it reaches extreme levels which have been criticised by the Lancet as being cruel. Routinely, parents are seen as the cause of autism by providing poor interactions with their children.

Treatment is intensive at the clinic – with commitments required from the parents of many weeks. Parents of ‘pre-autistic’ children can expect “36 hours of therapeutic treatment per week for around three weeks”. They ‘talk’ to the infant using ‘psycho-dynamic skills’ and work with the parents and siblings ‘to understand their inner world’.

A number of references are cited to support the claims, mostly written by Stella Acquarone – who happens to be the Director of the Parent-Infant Clinic.

Indeed, Melanie Sykes is reported to say “It is very expensive so the charity raises money for people who cannot afford to put their children through the therapy.”

So, what are the concerns? If IPAN and the Parent Infant Clinic are not correct then something terrible is happening.

As a parent of a 2 month old baby myself, I can say that of course we are always watching our child’s development and naturally we are concerned that things progress as they should do. For some parents, that worry could get out of hand and then they could easily be sucked into believing their child is suffering from ‘pre-autistic’ symptoms. They could then embark on a course of treatment that would be very time consuming, hugely expensive and disruptive of normal family life.

How would they know that the programme had been effective? Since no accepted diagnosis has been made, then a normal development cannot be seen to be a success. Why could that normal development not have happened anyway? If there are developmental problems with a child and this therapy is not effective, then the parents may be denied the chance to access mainstream advice and help having been drawn into the world of psychotherapy.

Indeed, a closer reading of the Melanie Sykes article reveals that indeed her own child has not yet had an official diagnosis of autism, but that she believes her seven year old has been helped by the clinic. Having been told by the clinic that there were problems, and after some extensive therapy, her child’s speech progressed rapidly. I am sure you can see the problem here.

The newspaper articles in the Sun and Mail are misleading by leading with the headlines about Sykes having a child with Autism when no such diagnosis has been made. They are also being careless by not making clear that the treatments being discussed are not mainstream and would be disputed by experts in the field.

As we saw with the Observer Burzynski fiasco, the media easily falls for stories about charitable giving for children with illnesses with celebrities doing their bit to help. It is an area that needs special care, as those selling unconventional and unproven treatments can easily slip under the petticoats of charity and collect large amounts of money for their own private clinics.

Related posts:

1. Life’s 4 Living: Audiokinetron and Lumatron Nonsense A bit of a ding dong has started up over at HolfordWatch after they questioned some of the activities of a charity called Life’s 4 Living. There is now a...
2. Broccoli for Brains Last Friday, saw Trevor McDonut’s ‘Tonight with’ programme showcase Patrick Holford’s ‘Food for the Brain’ charity and its involvement with a school. The school apparently saw lots of improvements with...
3. Chinese Whispers – MMR and the Press Just a few days before Andrew Wakefield appears before the GMC disciplinary body on charges of misconduct, a front page article in the Observer makes fresh claims of links between...

So, first off, it was great to see Dr Christian Jessen raise the issue in the London Evening Standard.

But more importantly, there is news that, after a swift campaign, one Burzynski supporting charity will not be receiving funds from benefit concerts anymore.

Yes to Life is a well meaning but deeply confused charity that tries to encourage people with cancer to take ‘alternative’ options. By this, I mean that it puts people in touch with techniques and practitioners who use unproven, disproven, superstitious and pseudoscientific forms of cancer treatment. In short, it peddles false hope.

The charity lists every quack cancer therapy you can name, inlcuding Laetrile, Vitamin C, Gerson, Issels and Mistletoe. Not only does it list these therapies but lists practitioners both in the UK and overseas that are prepared to take your money and provide treatments outside of the mainstream. The site lists the great and the good of alternative medicine in the UK, including Dr Peter Fisher, Dr Wendy Denning, Professor George Lewith and Dr Jean Munro.

We see lesser known doctors, such as Dr Andrew Young-Snell in Brighton, offer Ozone therapy, Vitamin C tablets, Hyperthermia treatment and nutritional therapy, for £170 per hour.

Of course, Yes to Life lists Dr Burzynski of Houston and his Antineoplaston Therapy. We are told this therapy can “reprogram cancerous cells to behave like normal cells.”

Yes to Life has many high profile supporters that promote this very peculiar practice including Barbara Flynn, Maureen Lipman and Jerry Hall. Medical supporters include many previously associated with Prince Charles’ defunct quack charity, the Foundation for Integrated Health, including Dr Rosy Daniel, Boo Armstrong and head of the NHS Alliance, Dr Michael ‘Dickie Bow’ Dixon.

And outside of the medical world, let us not forget ‘Professor’ Jayney Goddard, President of the Complementary Medical Association and Fellow of the Royal Society of Medicine.

So, it concerned a number of people to see a charity night being put on in April at the Bloomsbury theatre in London in aid of this organisation.  The gig was to be given by everyone’s favourite marijuanna smuggler and convicted criminal, Mr Howard Marks. Now, by all accounts, Mr Marks is a very nice man, and I am not sure he was aware that he was getting into bed with such disreputable folk.

The Bloomsbury probably did not know too. The theatre is part of University College London with its own medical school. The Bloomsbury has been hosting great sceptical events, including Robin Ince’s Nine Lessons, and has seen Brian Cox, Richard Dawkins, Ben Goldacre and Simon Singh perform there. There was a strong feeling that this was not right.

And so, starting with Susan Bewley of Healthwatch, a number of people wrote to the theatre and the organisation, The Charity Fundraiser, to highlight their concerns. Prominent oncologists from UCL joined with well known science writers and scientists to ask if the event could be reconsidered. And it is to the great credit of Jeremy Banks and the director of the theatre, Peter Cadley, that they engaged with the problem and quickly found a resolution.

So, the good news is that the event will still be going ahead – and I do understand Howard Marks can be very entertaining – but all funds raised will be going to the Beyond Food Foundation, a charity that helps the homeless find meaningful employment. I hope you can go and enjoy the evening.

I doubt this would have been possible without the wave of awareness that has been generated on twitter and blogs since last November when Peter Kay was raising funds for Burzynski’s treatments and the Observer was running uncritical articles on his methods.

It maybe one small piece of the huge problem of misleading cancer treatments, but hopefully there is a slightly smaller chance that desperately ill people will be misinformed and feel they need to spend the last of their money on snake oil.

Related posts:

1. Burzynski in Court: Patient treated like a ‘Cash Machine’ Dr Stanislaw Burzynski has some problems. His forthcoming hearing with the Texas Medical Board has been widely publicised.  It would now appear that he has more immediate concerns. According to...
2. The False Hope of the Burzynski Clinic Yesterday’s Observer contained a full page, heart breaking story of a 4-year old girl, Billie Bainbridge, who has a inoperable and rare form of brain cancer, Diffuse Intrinsic Pontine...
3. The Burzynski Clinic Threatens 17 Year Old Blogger I have been hinting that Burzynski has been threatening other prominent UK bloggers. Well, that blogger has now gone public. Rhys Morgan Rhys Morgan is a 17 year old schoolboy...

According to the Courthouse News Service, an elderly cancer patient is suing Burzynski for allegedly ”bilking her of nearly $100,000″.

The charges are horrific and may well finish off Burzynski. Amongst those reported are that the clinic pursuaded Lola Quinlan to embark on Burzynski’s ‘proprietary’ treatments in lieu of mainstream treatments. He failed to disclose that these treatments were part of a trial. He also “provided false and misleading information about ‘gene therapy’ which allegedly lacked the negative side effects associated with traditional cancer treatments”.

The patient also claims she was coerced into overpaying for medicine by being told she could not take her prescriptions to another pharmacy, but only to the Southern Family Pharmacy. Burzynski failed to inform her that he also owned this pharmacy which sold the drugs at “at a highly overinflated prices”.

After being told that the treatments were side-effects free, Quinlan suffered “weakness, infections, vomiting, fatigue, mouth sores, dizziness, affected taste buds, joint pain and skin sores.”

If these accusations are proven in court, then it will be very serious for Dr Burzynski and his clinic. It would be difficult to see how the Texas Medical Board would allow him to continue.

But Burzynski has many supporters. Here in the UK, we have seen the Observer uncritically promote him and their reader’s editor Stephen Pritchard got angry at bloggers for suggesting there was something wrong. We saw TV doctor Hilary Jones tell us on the breakfast show sofas that Burzynski was a ‘pioneer’ and that ‘and pioneers in medicine tend to get a rough ride to begin with’. Such as charges of defrauding old ladies with cancer.

We have seen newspapers continuously churing out the trope of a dying child requiring hundreds of thousands of pounds to go to Texas as the NHS was too mean to pay. The first mainstream paper to actually talk about Burzynski without framing him as a hero treating dying children was only yesterday in the London Evening Standard in Dr Christian Jessen’s column.

We have had many celebrities raising funds for Burzynski, such Peter Kay and Badly Drawn Boy. None have seen fit to properly acknowledge the issues. We are seeing the Documentary Channel in the US giving Burzynski an award for a documentary made by conspiracy theorist film makers. We see New Internationist in Australia selling his commercial video online as it fits in with their preconceived ideas of how big and nasty authorities are. When challenged they said, “the film was more about the power of the FDA as a lobby group for big business.”

All these things are used to enrich Burzynski. It is only the action of bloggers that have brought the concerns about this man to a wider audience.

But he has many supporters. No doubt they will be accommodating this trial into their conspiracy fantasies. This is part of the underhand persecution of this heroic man. Many of his patients have invested their last hopes in his treatments. I cannot imagine what it feels like for them.

And for one little girl, who was recently sat alongside Dr Jones on the TV sofas, she is starting this week an extremely agressive form of chemotherapy, Thiotepa, which can have very unpleasant life threatening side effects. According to her father’s blog, this will not save her life, but may buy her enough time to be able to fly to Texas to begin Burzynski’s treatment.

I am not afraid of saying that I wept when I read that blog.

Related posts:

1. Dr Hilary Jones Promotes Questionable Burzynski Clinic on TV There is a stark and inexplicable difference in how the mainstream media and bloggers have been covering the Texas based cancer clinic of Dr Stanislaw Burzynski. There has been an...
2. The Burzynski Clinic Threatens 17 Year Old Blogger I have been hinting that Burzynski has been threatening other prominent UK bloggers. Well, that blogger has now gone public. Rhys Morgan Rhys Morgan is a 17 year old schoolboy...
3. The False Hope of the Burzynski Clinic Yesterday’s Observer contained a full page, heart breaking story of a 4-year old girl, Billie Bainbridge, who has a inoperable and rare form of brain cancer, Diffuse Intrinsic Pontine...

Online reviews of products and services can often be misleading as you do not know anything about the reviewers motives and depth of experiences. More often than not, I find myself wondering if reviews say more about the reviewer than the product. So, it’s good to see independent consumer organisations such as Which? systematically review and rate competing products.

One thing did strike me though, and that is that Which? tend not to focus on dodgy health product claims. I had put this down to simple commercial reasons. When you write a bad review of a bogus toaster which has a tendency to burst into flames, or a pushchair that happily chops off babies fingers, you are unlikely to get cancelled subscriptions from people who own those products. But those who have bought into the cult-like beliefs of much alternative medicine are going to get angry, upset and believe Which? is now in cahoots with Big Pharma.

So, I am very pleased to see that Which? have done some great investigative journalism into nutritionists. The results are shocking.

Well, they will not be shocking to you if you have been reading stuff like Ben Goldacre’s Bad Science.

Nutritional therapy is a form of karaoke medicine. The practitioners go through all the motions of looking like they know about science, diet and health, but what they actually do is spout painful nonsense. Sometimes dangerous nonsense.

Which? sent five of their reporters undercover to pose as patients. They visited a total of 15 nutritional therapists. The reporters posed several health issues such as having breast cancer, suffering from long lasting fatigue or having problems conceiving.

Out of the 15 therapists, 6 of them gave advice that Which? scored as a ‘dangerous fail’. This included advice to delay radiotherapy treatment and instead try to cure the cancer by cutting sugar out of the diet. Another advised the reporter not to report feeling unwell to their GP as they would not understand the diet they were to be placed on.

A further 8 therapists gave advice classed as a ‘Fail’, including offering quack diagnostic tests such as Hair Mineral Analysis and Iridology. One woman was told she could not conceive as she was suffering from a ‘leathery bowel’.

Twelve of the consultations resulted in patients being sold vitamin and mineral supplements costing up to £70 per month. In general, Which? said,

Most therapists over-simplified symptoms and failed to recognise important ‘red flag’ symptoms requiring proper medical attention. Their medical explanations, understanding of how the body works and their knowledge of vitamins and minerals was also poor. One therapist told Mark that weight had nothing to do with type 2 diabetes and another told Helen that alcohol is not a risk-factor for breast cancer.

Out of the 15 Nutritional Therapists visited, only 1 gave ‘Borderline Pass’ advice.

Which? is now demanding the government properly regulate the sector. Their Executive Director, Richard Lloyd said,

We found some shocking examples of irresponsible advice given by nutritional therapists. Our research shows that not only were they a waste of money, but some of their recommendations could seriously harm people’s health.

This is largely a self-regulated industry where anyone can set up and practice as a nutritional therapist, meaning there is no real protection for consumers. While the majority of the therapists Which? visited were registered with the industry body, BANT, our findings show that it is failing to police these practitioners effectively.

“Which? wants the government to take action to stop nutritional therapists putting people’s health at risk.

There is a huge danger in advocating ‘better regulation’ for practitioners of superstitious and pseudoscientific therapists. In short, regulating nonsense just results in legitimising nonsense.

Nutritional Therapists claim to be regulated right now. BANT, the British Association for Applied Nutrition and Nutritional Therapy, claims to have a code of conduct and regulate practitioners. BANT did not respond to Which? when challenged about these results. That is, I believe, because Nutritionists see this type of advice as good advice. Nutritional Therapists have cult-like and conspiratorial beliefs that mean they think mainstream doctors know nothing about nutrition and are covering up ‘natural’ health cures to protect pharmaceutical company interests.

And while they look to the money obsessed evils of Big Pharma, BANT specifically allow kick backs from vitamin pill sales to their customers. No wonder this survey saw so many being sold.

Of course, there is a proper statutory regulator for those wanting to give dietary advice in a clinical setting. The Health Professions Council regulates dieticians – it is illegal to call yourself a dietician without being registered. In contrast, anyone can call themselves a nutritionist regardless of training or affiliation with any so-called regulator.

Several government attempts have already been tried to create regulators for quack therapies. Ofquack, or the Complementary and Natural Healthcare Council, was set up by Prince Charles and funded by the Department of Health. The CNHC have been limping along for years now and have failed to persuade many nutritionists to be their regulator.

The CNHC (http://www.ofquack.org.uk)  have also been a complete failure in understanding how they need to protect the public. They have decided that they cannot make their registrants to stop making misleading claims. They also appear to have a problem finding fault in their members if they have been trained to believe their own misleading claims. As such, Ofquack are incapable of protecting the public from the sort of problems raised by Which? Nutritionists are trained to believe all sorts of nonsense about diet. Regulating them without considering whether what they believe to be true is giving them a fig leaf. Clearly any form of voluntary regulation would fail.

But what of statutory regulation? That has problems too. Chiropractors have also been statutorily regulated. But as another placebo therapy, regulation has not stopped them making very serious bogus claims over the years. It was only when the chiropractors decided to sue Simon Singh for pointing this out that all this came to public attention. Since then, the British Chiropractic Association has been humiliated and their regulator, the General Chiropractic Council exposed as a chocolate teapot.

Such situations are bound to occur when you attempt to regulate nonsense. You don’t stop the nonsense being believed and practiced, and any attempt to clear it out would quickly result in the end of the regulator.

So what to do? It is worth pointing out the vast gulf between Dieticians and Nutritionists. Should statutory regulation of some sort be placed over nutritionists, we would essentially have two regulators for people who wish to offer healthy eating advice to the public based on very different worldviews and attitudes to evidence.

I feel it worth repeating some words I wrote several years ago when I was writing about Patrick Holford.

So, we have two worlds in the UK. Worlds with very different views on how food and diet affects our health and how we can manipulate diet to improve our health.

The first world is typically populated by scientists and dieticians. They take an evidence-based approach to understanding food and are cautious in coming to conclusion where there is insufficient data. They work in clinical practice, in hospitals, universities and on an NHS wage. They advise on good, affordable and understandable diets, and treat patients who are sick and need careful advice on their road back to health. They concentrate on the overall diet and not on an obsession with nutrients. They are regulated under law, have transparent and meaningful governing bodies. They are accountable for their actions and can be struck off if they fail in their duties. They promote their work in science journals. They share their canteens with nurses, surgeons, medical students and doctors.

The second world is populated by lawyers, accountants and journalists that have undertaken a career change. Younger students enter independent nutrition colleges and need little scientific training to do so. If they don’t get training, they add ‘Dr’ to their name anyway and get a contact with Channel 4. They selectively pick evidence that suits their alternative philosophies and learn to be suspicious, if not downright hostile, to science and medicine. They work in private practice and sell food supplements, questionable allergy tests and hair mineral analyses. They confuse allergy and intolerance, and fetish on vitamins and minerals, whilst advising clients to remove whole food groups from their diets. They sell their business to the worried well and poke around in their poo. They are not statutorily regulated and so lack that accountability. They promote their work in newspapers and magazines. They share their Richmond bistro with reflexologists, personal trainers, homeopaths and TV producers.

One way out would be to include the words ‘Nutritionist’ or ‘Nutritional Therapist’ in exactly the same legislation as exists for Dieticians. Nutritionists would require the same education, standards of professionalism and approach to evidence. This would essentially immediately criminalise the second  group and ensure the public are never confused about the two groups.

Such a move would be very heavily resisted by the nutritionists of course. They would not want to abandon their unevidenced and whacky beliefs about vitamin pills. And I suspect, the government would have no appetite to increase the burden of legislation on them.

I fear, that although this Which? report has been very good, it may well hasten government action towards mere legitimisation of dangerous health beliefs through ill thought through regulation. And that will not be in consumers’ interests.

*************************************************************************************************

David Colquhoun, who helped advise Which? on this report, has also written about their findings here.

Related posts:

1. Nutritional Therapists Fail to Join Ofquack The Complementary and Natural Healthcare Council, Ofquack, is having an appalling start to its life. Needing 10,000 people to join its register in the first year to break even, it...
2. Alleged Victim of Oxford Nutritionist ‘Detox Diet’ wins £810,000 Barbara Nash is a nutritionist based near Oxford. Dawn Page was overweight and sought the advice of Nash. It is alleged she was put on a ‘detox diet’ which included...
3. Andy Burman Resigns From Ofquack Andy Burman, Chief Executive of the British Dietetic Association, appears to have resigned his post from the Complementary and Natural Healthcare Council (Ofquack). This news follows my recent criticism...

Just before Christmas, Lia Burkeman and Stephanie Kramer, wrote an article for Urban Times that asked the question, “Homeopathy: Can it be a Success Story?”

To start, I would like to agree with the pair that indeed homeopathy is very successful. As a set of ideas, they have been around for about 200 years. Many thousands of people practice homeopathy based on the principles described by Lia and Stephanie. And undoubtedy, there are millions of people that believe homeopathy has helped them with illness.

Furthermore, there is significant money to be made from homeopathy. The largest homeopathic pharmaceutical company in the world is the French-based Boiron with a annual turnover exceeding half a billion Euros. The British homeopathic company Ainsworths, discussed in the article, is smaller. Nonetheless, it holds Royal Warrants from the Queen and Prince Charles. These are indeed successful businesses.

But it is clear that Lia and Stephanie do not want us to believe that homeopathy is successful just because of its longevity and financial success. They want us to believe homeopathy is successful because its ideas are true and that it is effective.

Before we explore that, it is worth stating what ought to be obvious: throughout the history of medicine, many people have held incorrect medical beliefs that have persisted for a very long time. Persistence of a belief by countless people is not an argument for effectiveness. For example, bloodletting was a practice that was widely used for about 2,000 years right up into the 19th Century. And yet, throughout that time, it was certainly mostly ineffective and quite probably doing a lot of harm. It is quite probable that bloodletting was the cause of George Washington’s death. Nonetheless, amongst mainstream medical practitioners, this technique was seen as a something of a panacea, with text books claiming cures for everything from acne to cancer and leprosy.

But why should this be so? Why is it that people find it so hard to tell if a therapy is effective or not?

In 1850, about the time that bloodletting was dying out, the American doctor Worthington Hooker was considering why people believe treatments to be effective when they are not. His book, Lessons from the History of Medical Delusions is still very much relevant today.

Hooker realised that the history of medicine was a “succession of error, standing out in bold prominence, each one having, as it rose to its ascendancy, supplanted some error that preceded it.” He believed that if medicine was to move from sequential delusions towards effective truth, then we should not just look at why each successive medical theory was wrong, but to come up with general reasons why doctors and their patients continually make mistakes about what is effective and what is not.

The first and most important source of error was “the too ready disposition to consider whatever follows a cause as being a result of that cause”.

That is, just because people report improved symptoms after a treatment does not mean that the treatment is effective. We all know that for many common ailments our bodies are quite capable of healing and recovery. We may suffer from hay fever, a bad back, an infection or an injury. We do get better. Our bodies are good at this. Just because we have taken a herbal remedy, been to a chiropractor, or taken some homeopathic arnica does not mean our actions were effective. We may have recovered without such intervention. Of course, people take different amounts of time to recover. It is impossible to predict just how long this bruise will last, or how quickly our cold will clear up. We may try successive cures until something works. Even if we have a chronic illness that might last for years, we know people have good days and bad days. People inevitably seek treatments when symptoms are at their worst. It is equally inevitable that we will subsequently have better days, even if our chosen treatment was ineffective. Jumping to conclusions, based on simple experiences of treatments, can quickly lead us to error. This point may appear trivial, and yet it is the foundation for belief in all superstitious and pseudo-scientific treatments.

And this is exactly the mistake that Stephanie Kramer appears to have made in her article.

Stephanie described how she had a painful eye.  Her doctor  informed her that she had adenoviral conjunctivitis and that she had to “fight this one out” and let nature take its course. She was obviously dissatisfied with this advice as it would  take “approximately 4 weeks” and she was in some pain.  The position Stephanie found herself in was ripe for exploitation by an ‘alternative medicine’: unhappiness with mainstream advice and having a painful but self-limiting condition.

And so Stephanie visited a homeopath working at Ainsworths homeopathic pharmacy in London. After a long consultation, her homeopath gave her three homeopathic remedies based on bee venom, the herb euphrasia and sulphur. After five days, her symptoms began to subside and she felt that homeopathy had ‘trumped medicine’.

Are we to be convinced by this? Of course not. Four weeks is the upper end of how long this infection lasts. Symptoms typically improve after a week or two. And this is exactly what Stephanie experienced.

But somehow, this experience has had a powerful effect on Stephanie and that now “homeopathy will be a part of [her] life forever”.

Nonetheless, despite the weakness of this anecdote, it is still possible that homeopathy was effective and that Stephanie’s illness was reduced in  severity. So, how do we know that homeopathy is a delusion? And why do people not spot the simple mistake they have made?

Let’s move onto Worthington Hooker’s second reason why people fall into medical delusions. The second error  is to “adopt exclusive views and notions“, that is to see an idea as being the One True Theory of medicine.

Once someone has had an epiphany with homeopathy, as described by Stephanie, then it is an easy to start getting steeped in the esoteric knowledge possessed by homeopaths. This is an extremely alluring process, much like how cults suck people in, where you feel like you are becoming privileged to exclusive knowledge.

Homeopathy is based on a number of so-called ‘Laws’. The first, as described by Lia in the article, is the principle of ‘like-cures-like’. For example, because onions make you cry, then onions can treat symptoms of runny eyes, such as in hayfever. Because bee venom causes swelling, then bee venom can treat swelling, such as in Stephanie’s infected eye.

Homeopaths claim they have found the true laws of illness and health. And indeed, the founder of homeopathy, Samuel Hahnemnann, denounced mainstream doctors as actually harming patients by not following his ideas and instead applying ‘allopathic’ medicine. But of course, such a law is nonsense. We now know that disease and illness are caused by many factors including different infectious agents, genetic and environmental problems. The homeopathic belief that living bodies have a ‘vital force’ that when imbalanced causes ill health is a pre-scientific and superstitious notion.

And as our initiate moves deeper into the exclusive cult of homeopathy, they become ready for making another of Hooker’s errors: to run to extremes, and to believe things that are quite the opposite of what the mainstream believe. The second law of homeopathy is quite bizarre and is not discussed in Lia and Stephanie’s article. Instead they present an ‘acceptable’ but misleading version of it in stating that homeopathy uses “highly dilute substances” to treat illness. This is not strictly true. Instead, homeopaths are taught that they should use the ‘minimum dose’ of their medicine and that you should prepare those doses by sequential dilution and shaking of the original tincture. And that the more you dilute a substance, the greater is its ‘potency’. In practice, this means that homeopathic remedies are so dilute that no substance remains and that all you are given is sugar pills. So, Stephanie did not receive bee venom, euphrasia and sulphur, but three sets of sugar pills merely labeled with these names.

Such a notion of dilution resulting in larger effects is counter to our everyday understanding of the world. You do not make coffee stronger by diluting it. You do not get drunk on shandy. Because all homeopathic remedies are essentially identically inert pills, homeopaths are free to make remedies from any and all substances no matter how poisonous, harmless or daft. On Ainsworths sales site, you can buy remedies made from Asbestos, Positronium, Tyrannosaurus Rex, Brillo Pad and Twiglets. You are not told about such remedies on public blog posts because you are not in the cult and you are still freely thinking.

The philosopher Stephen Law describes in his book Believing Bullshit how people get trapped in cult like thinking. He describes it as getting sucked into an intellectual black hole. That is, once you pass a threshold  of belief there is no way out for you. You are trained to think in certain constrained ways that prevent you seeing your own obvious errors. You are condemned to believe things that the outside world sees as absurd. Worthington Hooker anticipated one way you can get stuck in that hole in his next reason why medical delusions persist: the disposition to theorise instead of encountering the labour of strict observation.

Homeopaths do not allow their beliefs to be challenged by facts, instead the facts are twisted to fit into their theory. If a patient gets better, homeopathy works; if a patient gets worse, then that is a reaction to the remedy, and homeopathy works; if a patient stays the same then it is because you need to be patient with homeopathy, and homeopathy works. No outcome of a homeopathic encounter could challenge their belief in their theory. All narratives fit.

And as for me, I will be denounced conspiratorially as a shill for the pharmaceutical companies. I will be told I am closed minded and ignorant. I will be told to try homeopathy myself and not to try to shut down choice for others. I will be told how modern medicine kills thousands of people, apparently. Anything other than engage with the arguments that homeopathy is a delusion based on simple misunderstandings of cause and effect and of cult-like thinking.

And the harms? Well they are just sugar pills. But a wedge has now been driven between Stephanie and her doctor. She may have been given good medical advice about her conjunctivitis from her doctor, such as how to avoid infecting others. But instead she has fallen for the magical thinking of the homeopath. That did little harm this time – her condition cleared up on its own. But next time, with a more serious condition, who will she be listening to?

Related posts:

1. "Nothing Acts as Well as FairDeal Homeopathy" It looks like the campaign to clean up homeopathy is having effects! A new supplier of homeopathic remedies appears to have entered the market with the promise that “we won’t...
2. Will Homeopathy and iTunes Cure AIDS? Peter Chappell (10 Canards) is a founder member of the Society of Homeopaths, he is a Fellow of the Society and has written several influential books on homeopathy. He describes...
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Don’t worry. That homeopathic pharmacy to the Royals has the perfect remedy kit to see you through the following days.

Ainsworths Pharmacy is pleased to bring you the following remedies. Remember, these are homeopathic medicinal product used within the homeopathic tradition for the symptomatic relief of Christmas overindulgence.

Turkey 30C – Do you have an ubiquitous feeling of never ending dryness? Feeling that even spiced chutney cannot restore your appetite? Homeopathic Turkey will restore your taste buds and make you wish you were back in your staff canteen.

Sprout 12C – Mother-in-law still sat on the sofa blowing her trouser trumpet? From a single sprout, every year, we make a million remedies that cure all those Boxing Day fumes. No more need to blame it on the dog.

Norway Spruce 30C – Just wishing it was twelfth night and all over? Worried you will be vacuuming until June to get rid of all these non-drop needles? This is the remedy every family needs come January 6th. Don’t forget your Amaryllys 12C to help get rid of unwanted plant matter from your home too.

Mouth feeling like the bottom a bird cage after the office party? Parrot Droppings & Feathers 30C will make you forget that rather uncomfortable pass you made to that new person in admin. If you have not yet been to the office party and fearing that someone might slip you a mickey fin, take a Rohypnol 30C the day before.

Of course, homeopathy needs to be individualised according to how you have overindulged, so we include a selection of our favourites, all in 30C potency: Potato Crisp, Roast Beef, Cooked Pork, Dates, Brazil Nut, Gin, Whisky, Tobacco Ash, Cocaine, E. Coli and Tyrannosaurus Rex.

And let’s not forget our annual favourite for coping with that feeling that you could not eat a single thing more: Homeopathic Twiglet 30C. Yes, twiglet. Homeopathic twiglet. That is how freaking holistic we are. Twiglet. Sticky, marmity twiglet. Twiglet. With the memory of twiglet. Just for you.

“Twiglets have the effect of causing stomach nausea & intestinal pain due to the high fibre content if consumed in High Volume.”

Twiglet.

It’s what we use to treat AIDS in Africa.

Homeopathic Twiglet.

Using the finest nanobollockules to form the memory of twiglet.

As the Society of Homeopaths say, homeopaths are, “trained to high standards and agree to practise according to a strict code of ethics and practice”. Yes, homeopathy is an evidence-based medicine that uses diluted twiglets.

At least we sell one thing that is not completely batshit misleading: Homeopathic Tap Water.

Happy Christmas

And a Happy New Year

I need a drink.

UPDATE

If you want to see a more measured critique of Ainsworth’s Pharmacy and how it runs into trouble with medicines law, read about how they have run into trouble here.

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There has been an explosion of blog posts since the clinic starting threatening bloggers who questioned the claims of the clinic, my own blog included.

Instead of looking at the claims of the clinic and the ethical practices involved in the long running ‘trials’, the mainstream media have been unable to tackle the issues in any other way than framed through the stories of desperately poorly children who are wanting to attend the clinic and need hundreds of thousands to get there. When framed in this way, the ‘human interest’ story will always overwhelm any concerns that people may have about this centre.

Bloggers, almost without exception, have focussed their writing on the science and ethics of the clinic – both of which have caused much concern. If patients have been involved, it has been tangential and as part of a discussion as to how Burzynski presents himself. The Observer responded to criticism of its own coverage by damning the bloggers who tackled the way in which the paper had discussed Burzynski, calling them ‘sanctimonious and aggressive’ and “having a disregard for the facts”.

It’s a topsy-turvy world.

The paper highlighted how the parents of children with cancer were distressed by much of the online coverage. Indeed this may be true. But the mainstream media is not showing that it is themselves who are putting these vulnerable people into the spotlight where indeed they may be exposed to negative coverage of their “personal choice of treatment”. Bloggers, if they want to cover the issue, are in a near impossible position.They cannot cover the serious issues about Burzynski without being made to look like thoughtless and socially inept fools who will make the families of terminally ill children suffer.

For their part, there has not been a single mainstream UK media article, programme or news item that has focussed squarely on how this clinic is almost certainly raising false hope, depriving desperate families of their life savings and misleading the world as to what it is really doing.

Even the Guardian had to frame their critical story of Burzynski through a 17 year old, who is himself seriously ill, who is having his own “struggles with injustice”.

This morning delivered a particular low point in this story.

ITV’s Daybreak programme brought on a girl with cancer, Chiane Cloete, and her father to talk about how they were raising £130,000 to send the five year old to Burzynski. Dr Hilary Jones, the programmes resident doctor, was there on the sofa to discuss the issues.

The segment started promisingly with one of the presenters saying how Burzynski was “controversial” and had been tried for fraud, and how the treatments ‘were not recognised by the US authorities.

Jones was explicitly challenged over the ‘question marks’ regarding sending someone to this clinic in the US. His response was shocking,

The treatment that Dr Burzynski is offering is very experimental. It is pioneering research, and pioneers in medicine tend to get a rough ride to begin with.

This is a simple distortion. Burzynski cannot be described as a ‘pioneer’. He has been treating people in this way for over thirty years. He is using an approach that other investigators have explored and found unsatisfactory. He is also using a ragbag of conventional chemo drugs in a haphazard way. So, whilst, ‘to begin with’ you might expect some harsh criticism. But after decades of being unable to provide decent results from your ‘experiment’ you might start to expect quite a lot more than a ‘rough ride’.

Jones is playing straight the Burzynski advertising spiel, described so well by oncologist David Gorsky, as a ‘cult of personality’ where Burzynski is a “brave maverick doctor”.

Burzynski is not a maverick. At best, he may be incompetent. Gorsky says of him,

Dr. Burzynski’s stock in trade, as far as evidence goes, is anecdotes and case series without control groups subject to major confounders and selection bias, all wrapped in a patina of science-y sounding gobbledygook designed to mimic what real oncologists and real science do. He keeps numerous clinical trials open to allow him to administer his antineoplastons but never seems to be able to progress to phase III trials or to publish his clinical trial in halfway respectable journals. Unfortunately, although Dr. Burzynski is a good mimic and very talented at portraying the “brave maverick doctor,” he’s not so good at actually doing oncology. As I have shown before, he uses the results of a commercial test that does nothing better that what a lot of other cancer centers do and produces recommendations that are facile and whose applicability to the tumor being tested ranges from the painfully obvious without the test to the highly questionable to come up with cocktails of chemotherapy and targeted therapies without regard to potential interactions. Then, of course, he throws antineoplastons–excuse me, phenylbutyrate–into the mix. The result is a gmish of up to six or seven drugs thrown together without consideration of potential drug interactions, the likelihood of which rises markedly with each new drug added to the cocktail. Worse, Dr. Burzynski tells the press and his patients that he is not giving chemotherapy when, in fact, he gives lots and lots of chemotherapy in a non-evidence-based manner, along with huge doses of antineoplastons, either given as antineoplastons many grams at a time or as phenylbutyrate, which is an HDAC inhibitor and thus chemotherapy.

Jones goes on to explain how one of his friends is currently attending the clinic and is ‘very impressed with what goes on there. And we need to keep an open mind. It’s unfortunate it costs so much money, but pioneering treatment so often does.’

This again is deeply misleading. Burzynski is charging people huge amounts of money to be included in trials. Remember, trials are the only way he is allowed to deliver his treatments. His trials have been going on for decades. No substantial results have been published. People are not normally charged to take part in trials. Indeed, in many cases, patients are paid to take part. The costs for these trials have also been criticised by patients as being disproportionate for what they receive.

Appearing to endorse the approach and the costs of the clinic is deeply irresponsible in my opinion.

People have been tweeting that I should report Jones to the GMC or that this programme should be reported to Ofcom. I am not sure about that. The main disciplinary hearing I am interested in is when Burzynski faces the Texas Medical Board in the New Year. What I would actually like to see is the mainstream media actually cover Burzynski where he is the subject. Where the story is focussed on the criticisms of the clinic and not on some heart breaking story of a dying child.

At the moment, all the heavy lifting around this story is being left to bloggers. And for their efforts, they have been threatened by Burzynski’s hired gangsters. Rhys Morgan, 17, had pictures of his house sent to him. I was told to “Be smart and considerate for your family and new child, and shut the article down..Immediately”.

It’s not as if the public only want to hear about heroic children. I have had nearly a quarter of a million page views in the past month regarding these issues. It would not just be ethically right to cover Burzynski properly, but it might also be a sound economic decision.

Not that it should be, of course, But it makes it even stranger as to why the media are incapable of doing anything other than promoting this dubious wicked nonsense.

Related posts:

1. Burzynski in Court: Patient treated like a ‘Cash Machine’ Dr Stanislaw Burzynski has some problems. His forthcoming hearing with the Texas Medical Board has been widely publicised.  It would now appear that he has more immediate concerns. According to...
2. Burzynski Clinic Issues a Statement What to make of the press release issued by the Burzynski Clinic? Well, the good news is that Marc Stephens, the PR man who threatened my family, has had his...
3. The False Hope of the Burzynski Clinic Yesterday’s Observer contained a full page, heart breaking story of a 4-year old girl, Billie Bainbridge, who has a inoperable and rare form of brain cancer, Diffuse Intrinsic Pontine...

Written by Stephen Pritchard, the Readers’ Editor, the response attempts to justify its coverage and blames bloggers for “aggression, sanctimony and a disregard for the facts”. It is a disgraceful and self-serving response. Pritchard claimed their story was one of “courage and generosity”. No it was not. It was a story of exploitation of courage and generosity. The Observer still fails to understand this.

First of all, and let’s get this out of the way, as Pritchard himself admits, he has a conflict of interest. His son plays in the band Everything Everything which held a benefit gig to raise money to send a sick child to the Burzynski clinic. The original article was written by the Uncle, Luke Bainbridge, of the poorly four year old who also happened to have been the Music editor for the Observer. This involvement with such an emotive issue should have required more dispassionate voices at the paper to respond.

The response fails to address the serious concerns raised about the article, and instead appears to attack those concerned for insensitivity and a lack of understanding. This is incredible. I have found almost without exception, the dozens of blog posts written about this story to be compassionate, insightful and targeted at those who should have known better – not the families of cancer sufferers – but those promoting the clinic, raising money for untested treatments, and the clinic itself.

When I first broke the story of the Observer’s coverage, I received around about 4,000 views of that story on that day. After the Burzynski Clinic tried to threaten my family, and the story went viral, I have received close to 200,000 page views. Within that readership, if a few have acted insensitively, I am appalled, but I am not surprised. I understand someone tweeted a family attending the clinic – very poor judgement – but hardly representative of the wave of sympathy that has been extended to people in this appalling situation.

I also must say that I have been contacted on twitter  by one family attending the Burzynski clinic. The writer claimed to be harassed by the blogs and asked me to stop. I have never written about this family and do not intend to. But, the fact that I have been highly critical of ‘her choice of doctor’ appears to her that I am harassing her. Of course, I do not intend to. Nor do I want a public debate with her. I can fully understand that the decision to go to Texas has resulting in huge emotional and financial investment and created a hope for the future. The public debate needs to be had with those who wittingly or unwittingly support this clinic and make the huge payments possible.

But as one twitter user this morning asked, “I wonder if the Observer will be doing article on the difficulty the Nigerian Royal Family have getting money out of country?” That remark is not as flippant as it may appear. When we see people making bad decisions, or decisions based on misleading or incomplete information, are we to remain silent and see them come to harm? No one likes it being pointed out to them that they may have been misled. And no one wants their hopes taken away. But to write a ‘human interest’ story about their journey into misadventure without pointing out the dangers in their decisions is not “human interest”, but complicity in misinformation.

The article fails to get to the nub of the concerns with Burzynski. First and foremost, the dubious ethics of charging parents of terminally ill children, hundreds of thousands of dollars, to enroll them in trials for a treatment that has failed to demonstrate any good evidence that it may be effective over 30 years. Burzynski is running a private clinic. He sells anti-aging creams, vitamins and supplements. He is under investigation by the Texas Medical Board. These are a few of the many red flags that ought to raise deep concerns. Even if he is on to something with his antineoplastons, he is asking the terminally ill to provide the investment funds for his research programme. His patients are taking all the risks, both with their health and wealth. He is reaping rewards whether he is right or not. Such actions go against the fundamentals of medical ethics.

Pritchard justifies the approach by saying “the point that is being lost in the vitriol that is flying around the internet” is that the treatment provides some hope for the parents.” My original article suggested that it was cruel to raise false hope. The costs involved are not just financial, but carry pain and risks for those being treated. In any medical treatment decision, there are benefits and risks. At some point, a balance needs to be struck. A glimmer of hope cannot be a full justification. Ken Murray has written recently how doctors tend to take fewer and less aggressive treatments at end of life. They better know the balances of risks and benefits, and can better decide on the trade offs between quality and quantity of life. When we come to terminally ill children, the issues are different. Their decisions are made for them. The balance tends to shift towards an all out attempt to give quantity of life over other factors. Straws are clutched at and these decisions may not always be in the child’s best interest. It is these perfectly natural and desperate decisions that unscrupulous or incompetent people may trade off.

I do not know the answers. But these discussions need to be had. And they need to be had in the context that there are peddlers of miracle cures out there, that may appear genuine to a desperate eye, but offer nothing but anguish, false hope and bankruptcy.

The Observer’s response not only failed to look at these issues, but took issue with those people that tried to. Most disgracefully, they attacked the 17 year old blogger, Rhys Morgan, for saying in his Guardian CiF article about libel threats from Burzynski, that the family had researched Burzynski on the internet. The family appeared to take issue with this and the Guradian has amended the article to say “The family has asked us to make clear that members of the family completed a long and thorough period of research across a wide range of conventional and alternative treatments, both in the UK and abroad, before approaching the clinic.”

Is this the justification for calling bloggers like Rhys, “aggressive, sanctimonious and having a disregard for the facts?” You should read Rhys’s blog and articles and decide for yourself. The response also failed to note how Rhys had been threatened by representatives of Burzynski by sending him pictures of his house. This is not science and medicine, but gangersterism. Let me remind you, Rhys is still at school. If there has been aggression against children, it has not come from bloggers.

The article leaves several assertions still unchallenged. They claim that “[we] know it is unproven, but there are other families in this country who were told by their hospital that their condition was terminal and nothing could be done for them, but were then treated at the clinic and survived.”

This is a misleading statement and may encourage other down this dangerous path. All we have is a few case reports from Burzynski that do not bear much scrutiny (read this oncologist’s summary). This is the sales pitch of the clinic, not evidence of effectiveness.  One blogger looked at all the media coverage of fund-raising for Burzynski and said, “In fact, every single patient that I have found in media coverage of Burzynski for the past 10 years, with a sole exception, is dead.”

It is unlikely that the Observer will respond with a better article. They have form for not backing down when they report dubious alternative medicine claims (MMR). It would have been nice for future parents of very poorly children to see the Observer cover the risks of choosing such unconventional routes. But instead, they will see a myriad of well researched, compassionate and thoughtful articles on blogs when they do research on the internet, as they undoubtedly will. And that unfortunately, makes the Observer redundant. And in a time when newspapers are struggling to cope in the digital age, I cannot see how that is a good thing.

Related posts:

1. Dr Hilary Jones Promotes Questionable Burzynski Clinic on TV There is a stark and inexplicable difference in how the mainstream media and bloggers have been covering the Texas based cancer clinic of Dr Stanislaw Burzynski. There has been an...
2. Burzynski in Court: Patient treated like a ‘Cash Machine’ Dr Stanislaw Burzynski has some problems. His forthcoming hearing with the Texas Medical Board has been widely publicised.  It would now appear that he has more immediate concerns. According to...
3. The Burzynski Clinic Threatens 17 Year Old Blogger I have been hinting that Burzynski has been threatening other prominent UK bloggers. Well, that blogger has now gone public. Rhys Morgan Rhys Morgan is a 17 year old schoolboy...

Well, the good news is that Marc Stephens, the PR man who threatened my family, has had his ‘professional relationship’ severed. In this statement, we find out that Burzynski had indeed asked Stephens to stop criticisms of his business interests appearing on the web. And to do so, Stephens resorted to threatening bloggers, with the worst example being sending an image of a 17 year old blogger’s house to him. This is not ‘Search Engine Optimisation’. This is not science. This is gangsterism.

But has the Clinic changed its tune? It does not look like it too much. Burzynski states that bloggers will be contacted by his attorneys. So, instead of engaging in debates about the science of his questionable antineoplaston therapy, he is sending in his legal troops.

I await their communication. I hope to get a full apology and a bunch of flowers for the wife.

In the meantime, Burzynski has stated that bloggers will be told about ‘false and defamatory’ statements they are making.

We are told that Burzynski does not make his antineoplastons from piss. The drug is synthesised from ‘chemicals’ apparently. Yes, chemicals. What the statement does not mention is that originally, urine was used.

We are told that bloggers have accused Burzynski of falsely claiming to have a PhD. I am not aware of anyone who has done that. People have questioned his PhD, and we look forward to seeing the evidence that he holds a higher degree and the details of it.

We are told that Burzynski has published plenty of evidence for his treatment since 2006. To me, the list of publications looks misleading as the vast majority of them are conference presentations – not peer reviewed original papers published in high impact journals. The central concern over Burzynski is that he has no good evidence his treatments work. By publishing this list, he makes himself look either incompetent or uncomprehending, or at worst, firing off a smokescreen of ‘referenciness’. I hope he will correct this misleading representation of the state of research done in recent years.

What is most alarming is his choice of attorneys. Far from taking a more measured approach, his legal team appear to specialise in silencing bloggers to protect commercial interests.

The web site of Doziers Law is quite explicit. From their web site,

“Attack bloggers” need to be reined in. We are having pretty good success dealing with these types without having to file lawsuits all the time, but when it comes to push, we usually will pull the trigger and sue the “attack blogger”. It’s not free speech to create outrageous lies and propagate them all over the web. So, if you get a communication from us, be it a letter, a copy of a lawsuit, or a telephone call, consider the consequences that are about to ensue. The great majority of you already get the picture and agree to our demands. Smart move.

They go on,

And, for many of those intellectuals who relish this new toy called the web, and you are in high school or college, or have a life and a career and an employer, consider how it is going to look when, for the rest of your life, a lawsuit describing your misconduct in vivid and creative terms shows up on the first page of Google results for your name. Do you honestly think that a business is going to take a chance on hiring someone who has exhibited such poor judgment and inappropriate conduct? No. The business is going to move you to the bottom of the stack of applicants.

So, when you get a communication from us, understand the consequences. These lawsuits will show up on the front page of Google results under your name. SEO is not the sole province of bloggers, by the way. While your lawyers, particularly those involved with the public interest groups, use your case to gain attention and raise contributions, your reputation is being ruined forever. Your reputation as an employee, your reputation as a college applicant, your reputation as a job applicant, your reputation as a private person, your reputation as a husband, and your reputation as a father or mother.

Charming.

I see Marc Stephens may have learned a thing or two from them. I shall allow my readers to draw their own conclusions about the moral worth of these people.

A glimmer of humour may be gained from the fact that they do not appear to be able to manage these techniques for themselves. A google of ‘Dozier Law’ returns a number one hit of “Dozier Internet Law SUCKS”.

It would appear the Dr Buzynski is making a number of increasingly bizarre and bad decisions.

Related posts:

1. The Burzynski Clinic Threatens 17 Year Old Blogger I have been hinting that Burzynski has been threatening other prominent UK bloggers. Well, that blogger has now gone public. Rhys Morgan Rhys Morgan is a 17 year old schoolboy...
2. Burzynski in Court: Patient treated like a ‘Cash Machine’ Dr Stanislaw Burzynski has some problems. His forthcoming hearing with the Texas Medical Board has been widely publicised.  It would now appear that he has more immediate concerns. According to...
3. Dr Hilary Jones Promotes Questionable Burzynski Clinic on TV There is a stark and inexplicable difference in how the mainstream media and bloggers have been covering the Texas based cancer clinic of Dr Stanislaw Burzynski. There has been an...

Rhys Morgan

Rhys Morgan is a 17 year old schoolboy from Wales. He has a keen interest in quack remedies, having been exposed to many through his own health problems with Crohn’s Disease. He hit the headlines on the BBC last year for exposing the bizarre world of a quack cure called Miracle Mineral Solution, that had been touted to fellow Crohn’s sufferers.

Rhys not only blogged about this dangerous form of quackery, but lobbied Cardiff City Council to persuade them to get the Trading Standards Authority involved. For his efforts, the James Randi Educational Foundation awarded him him the Grassroots Skepticism prize at the London Hilton Metropole. The BBC reported that Rhys would go onto tackle more ‘miracle cure’ web sites.

The Blog Post

So, Rhys wrote about (see here) the Texas based clinic of Stanislaw R. Burzynski, M.D., Ph.D who offers a urine based therapy as a cure for cancer. In his article, Rhys discussed Stan Burzynski’s “antineoplaston therapy”. He highlighted the recent examples in the press of where a teenager in Ireland with a brain tumour was having €120,000 raised for him to be sent to the Burzynski clinic, and also the case of a young mother in the UK whose family was trying to raise £95,000 to be sent to America “as the NHS does not fund this treatment.”

The problem is, as Rhys noted, is that antineoplaston therapy is considered an unproven treatment based on a hunch. Burzynski has been conducting continuous clinical trials on his therapy. Indeed, it would appear that the only way to get treatment is to enrol in a trial – and then pay for the trial yourself. The results of these trials have not convinced other researchers. The American Cancer Society states that “Most cancer specialists believe there is insufficient evidence to recommend use of antineoplastons.” They note that even alternative medicine enthusiasts are wary of this treatment with Dr Andrew Weil saying, “I see no reason for any cancer patient to take this route.”

Rhys’s article is thoughtful but direct. Of the patients he mentioned, he says, “I hate the idea of taking away someone’s last hope. Even though this is false hope, I still hate taking it away.” But he fears that misleading desperately ill patients is even worse. I too share a contempt for those who seek to take huge sums of money off the dying by offering vain hopes through unproven cures. I get family members writing to me on this web site after loved ones have been dragged into quack cures during their last months, wasting money that surviving families really need and wasting time that could have been better used being close to those you love.

It is therefore no surprise that Rhys noted Burzynski conviction for fraudulently claiming money from an insurance company and hence saying “I take no issue with calling Stanislaw Burzynski a quack and a fraud.”.

The Threat from Burzynski

A few weeks ago, Rhys received an email from a Marc Stephens who stated that his post and tweets were “in violation of several state and federal laws.” and that he “immediately cease and desist in your actions defaming and libeling my clients.”

The letter gave Rhys a bit of a lecture of US law on libel seemingly unaware that they were talking to a 16 year old school boy who was not resident in the United States. The letter ended with the threat, “ 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.”

“GOVERN YOURSELF ACCORDINGLY.”

You might have seen similar threats elsewhere.

Rhys is a bit of a smart chap. But receiving this is not pleasant. It could have threatened his entire wealth of a few hundred pounds in a savings account. Furthermore, it offended his sense of justice and ethics to take down an article that he felt was entirely justified on the basis of a broad threat that failed to identify anything that was factually incorrect. Instead, Rhys noted the rather odd statement in the letter that “Every comment you made in your article is highly incorrect.” He knew this was not true.

A quick bit of Googling by Rhys revealed that Marc Stephens did not appear to be a lawyer but was employed by the Burzynski Clinic for the purposes of Marketing and Sponsorship.

Rhys responded saying that he had to finish school that day before he could do anything. Stephens responded asking Rhys to “Please forward the notice to your parents if you are actually in High School. This is a very serious matter. “ and then demanded that Rhys “provide a public apology to Dr. Burzynski and his patients and post it on your websites, and social media sites.”

All very odd behaviour.

So what to do?

Rhys has many good friends. He contacted myself for help. He spoke to Simon Singh who had been through a two year ordeal when the now totally discredited British Chiropractic Association tried and failed to sue him for defamation. He got some good advice.

Taking down his blog posts appeared to be a sensible thing to do in order to show good will whilst the problem was explored. That goodwill has not been extended back. So, Rhys has now republished and added a commentary. You had best read it.

My take

Rhys is a bit of an hero. With his campaigns to close down the dreadful Miracle Mineral Cure, he has undoubtedly helped many very poorly people from being duped into taking dangerous quack medicines.

You know what? It is just likely that at 17 years of age, Rhys Morgan has already saved more lives by simply speaking out than Burzynski has in three decades with his fixation on his “antineoplastons.”

Related posts:

1. The Burzynski Clinic Threatens My Family. Tonight, the entertainer Peter Kay will be performing the first of two special sell-out gigs in Blackpool to raise funds for a very poorly four-year old girl with brain cancer....
2. Burzynski Clinic Issues a Statement What to make of the press release issued by the Burzynski Clinic? Well, the good news is that Marc Stephens, the PR man who threatened my family, has had his...
3. The False Hope of the Burzynski Clinic Yesterday’s Observer contained a full page, heart breaking story of a 4-year old girl, Billie Bainbridge, who has a inoperable and rare form of brain cancer, Diffuse Intrinsic Pontine...