A month ago, I saw two young men in Bristol Temple Meads Station collecting money for the charity Kids Integrated Cancer Treatment. They were holding two large plastic apples for passing passengers to put money in and telling people they were like CLIC – a popular childrens’ cancer charity – except “Integrated”.
What made this everyday scene unusual is that one of the trustees of the charity, Jacqueline Wright was currently on trial with her husband, Kevin Wright, for charity fraud. That trial ended up with Jacqueline being acquitted, but her husband being found guilty on 10 counts of fraud and stealing £171,500 from a charity they set up. On Thursday of this week, Wright was sent to prison for five years for “ten counts of theft and two of fraud by false representation”. The money from the collections was used to fund “Wright’s “interests, investments and personal lifestyle”.
That charity, the Bobby Wright Cancer Fighting Fund, was set up after their own son developed cancer. However, it was not the only charity they were involved in. KICT is now being investigated by the Charities Commission for ‘possible links’ with Kevin Wright. Anyone looking at these charities should have been alarmed by the large number of red flags associated with Wright. It is amazing that these charities were allowed to get so far.
This was not Wright’s first time in court. He was found guilty of assault in 2012 against a wheel clamper. In 2008 he admitted using violence against one of his charity workers. He said, “I have put the violent side behind me. I used to hit people if they deserved it, but now I only hit people if they really, really deserve it.” A waiter in a hotel in 2010 obviously really deserved it too. After his trial, the judge revealed that Wright had also previously had convictions for theft and forgery.
Leaving aside, Wright’s dangerous temper and convictions, more worryingly is that his charity work appears to be all about pushing quackery for children with cancer. Calling it ‘Integrated’ is just a smoke-screen for promoting unproven and disproven treatments. This is not just about providing a glimmer of hope for very sick children, but actively promoting dangerous courses of action, and undermining relationships with GPs and oncologists.
Wright has been at the centre of a number of high profile cases of children with cancer. He was sheltering Sally Roberts, the mother who was trying to prevent her son, Neon, from receiving life saving treatment. A police raid on Wright’s home found them there. Wright had been advising Sally Roberts on so-called alternatives to radiotherapy, such as oxygen therapy and vitamins. (See documentary here.)
Last year, a little girl with neuroblastoma was sent to a very dodgy clinic in Mexico with the help of another charity called Families Against Neuroblastoma (FAN). It all went horribly wrong and the little girl needed urgent medical treatment and to return home. A huge appeal was made to raise hundreds of thousands of pounds to return the dying child to her home. She should never have gone to Mexico. FAN urged all parents they had relationshipswith to engage with KICT and the Wright family “as soon as possible”:
Run by the family of Bobby Wright, Neuroblastoma survivor. KICT can help with advice on Organic diets, advice and provision of supplements, loan of supportive equipment such as a light box and sauna, and much more. Their knowledge is second to none and they are a source of information to FAN. We recommend a consultation with KICT as early in treatment as possible.
FAN is not the only alternative medicine charity that directs parents towards Wright. The ‘thoroughly dangerous‘ charity Yes To Life, that also promotes highly questionable cancer treatments, also recommends KICT for under 18’s.
We can gain insight into how Kevin Wright and these charities work from a book that is about to be released about one boy’s fight against neuroblastoma. The Amazing Cancer Kid tells the story of Connah Broom, a young boy who was diagnosed with “terminal” neuroblastoma. This is indeed a dangerous disease, but some children do not die and there are many example of children who do relatively well despite their initial prognosis. This book though is about how the family believes it is to do with following the advice of people like Kevin Wright, Reiki and those Mexican treatments. Profits from the book will fund more “alternative treatments for Connah.
Connah’s grandparents were told by their doctor not to fall for misleading information on the internet. But the story tells how they made made contact with Wright and “and he made us see the light.”
Wright’s inital advice is told in comic strip form:
A few weeks later, Wright marched into their home to inspect their fridge to see if indeed they had gone organic and were filtering water. Of course now the wedges between the guardians of Connah and their medical professionals start to be hammered in. Their doctor had been keen to stress that they could give Connah occasional treats with fast food and so on and not to worry. And that there was no meaningful difference between ordinary and so-called organic food. But Wright’s charismatic magic was working and “they knew the doctor was wrong”.
This was just the beginning. KICT the charity was set up with Naturopath, Jo Gamble, who calls herself a ‘nutritional consultant’. She is the consultant to Kevin Wright’s commercial quack company Bobby’s Healthy Shop which sells all sorts of vitamins, supplements and other questionable products such as Hydrogen Peroxide, expensive juicers, anti-radiation ‘protection’ iodine, and ‘cancer products’ such as apricot kernels (which are very toxic). Families under the spell of Wright are soon loaded up with large quantities of these products. The 2012 charity report shows how Gamble has worked with about 40 families that came through the charity and how KICT has been funding Gamble’s trips to the US to go on courses about “disease prevention and detoxification”. She is also a Trustee of the charity.
We also see in the report how questionable lab tests are ordered for children from companies like Doctors Data. This company is currently attempting to sue a critic for describing how these tests might be used to defraud customers. We also see in their reports how much of their efforts have also been directed at the Express and Echo in trying to sue them for defamation for first bringing up the fact that Wright was using funds to live in his mansion.
Anyway, on the advice of Wright, Connah also went to the Hope4Cancer Mexican clinic and embarked on a series of infra-red saunas. The family are now clearly distrustful of doctors and are happy to accept the word of this convicted criminal. As the book concludes,
As a society, we need to confront the fact that the doctors – to whom we are entrusting our family members who have cancer – are not truly offering a complete road to recovery.
Kevin Wright was convicted of theft. He should have been locked away for putting children’s lives at risk by promoting nonsense therapies and selling dubious cancer products. Wright’s local paper, the Express and Echo, agrees with me. I suspect that what the Nottinghamshire police found here was the tip of an iceberg of questionable fund-raising activity allowing good lifestyles for people who claim to be be doing charitable work. But such investigations are time consuming and expensive and we must commend the police in this instance for seeing this through.
But what can be done to protect parents from the misinformation and dubious activities of charities that shake tins for dying children? The Charity Commission have been a chocolate teapot. I know that many people have reported their concerns to them only to be told that they should be taking it up with the charity trustees. When the trustees are family members and others who may profit from the charity’s activities, this is a course of action that will go nowhere. Especially when the people in the charity have convictions for violence and threats.
In Sweden it is illegal to treat children with quack medicine. But when the advice is mainly to eat organic food, consume expensive vitamin pills and travel overseas for ‘experimental’ treatment, that potential solution may be hard to enforce. Better scrutiny of charity accounts is almost certainly necessary to see where all this money is going, but that will be expensive. The Charity Commission need to have a more rubust inspection regime where vulnerable children like this are involved.
I made the same comments a year ago. I am not expecting any general lessons to be learned from this. But until they do, children will continue to be put at risk by charities who gain from giving false hope to desperate parents.
This is a dangerous side of the organic industry – the idea that eating organic food can prevent or even “cure” cancer.
The real tragedy is that it has so many supporters already – all by playing on the very real fears of cancer.
Isn’t ‘Organic’ just a cash-cow for the Soil Association? Or am I incorrectly tarring them with the same brush as the FairTrade brand?
Certification is almost certainly the chief source of income for the Soil Association (they certify about 80% of UK “organic” produce). I can’t find details of what exactly “Charitable activities” means on the Charity Commission SA summary page (http://apps.charitycommission.gov.uk/Showcharity/RegisterOfCharities/CharityWithPartB.aspx?RegisteredCharityNumber=206862&SubsidiaryNumber=0), but it accounts for £8.5m of their roughly £10m annual income and I suspect that it is dominated by the income from their not-for-profit certification subsidiary.
It’s not just about the money, though: the SA’s origins lie in Steiner’s biodynamic farming movement (Steiner being a favourite topic of this blog — and we come full circle!) and they are obviously ideologically committed to the idea that “organic” is fundamentally right. Even though the definition (now legal, for certification) of what is and isn’t organic makes about as much sense as the logic of homeopathy or biodynamics… or Green Party science policy. Like those, it’s been a remarkably successful brand, given (or perhaps partially due to) the price premium on “organic” produce and the lack of any evidence that it’s any better for you than the conventionally farmed alternative.
Which is not entirely to knock the organic brand: by correlation rather than design, farmers who wish to be “organic” also tend to care a great deal about their soil quality, biodiversity, etc. Eschewing potentially optimal herbicides or fertilizers (in favour of less specific, but older ones) is not the most efficient way to achieve that, but then the SA and so on seem to be less interested in genuinely optimal farming methods and more about an antiquarian/luddite philosophy, dressed up as a deep connection between people and nature… whatever that means.
“Organic” also tends to encourage buying from local suppliers, again by side-effect rather than design. The economics of food distribution can be surprising — local is really not best, sometimes — but it’s hard to condemn that trend.
Of course, many studies have now shown no substantial nutritional difference between “organic” and “normal” produce, but you certainly wouldn’t come to that conclusion if you got all your information from the SA website, celebrity chef endorsements, etc. …
I prefer to buy organic – not because I think that there will be any nutritional difference between the produce and the generic, supermarket produce; but because I think that I am helping the environment by not demanding that more pesticides etc be pumped into the environment etc. Is this wrong then?
At best it’s unclear, I would say (speaking not from any particular position of expertise, but just as a skeptic who’s tried to read what I can on the topic.) There is a lot of pro-organic cheerleading, but the data tends to be at best ambiguous.
For example, the carbon footprint of organic produce is higher than that of conventionally produced food, and the amount of land required to produce a given amount of organic produce is substantially higher (I think I recall seeing *twice* as much, but I don’t have a reference for that).
Also, on the specific issue of pesticide residues and runoffs, being organic doesn’t mean *no* pesticides can be used or even that the overall extent of pesticide use is less, but that the degree of *synthetic* pesticide residue is reduced. To me this is a rather pointless and semantic difference, since instead organic produce have equal or higher rates of “natural” pesticides. These aren’t any better for you or the environment than the synthetic ones of “modern” farming — arguably they are worse. So it’s about as meaningful as saying that organic food has a lower rate of, say, red coloured pesticides while ignoring that they are covered in blue ones (literally: copper sulphate is the best-known approved “organic” pesticide). Here’s an good article on this topic: http://blogs.scientificamerican.com/science-sushi/2012/09/24/pesticides-food-fears/ [Although since it’s from *Scientific* American it’s clearly the work of a corporate shill in the pocket of Big Food 😉 ]
It’s this odd logic behind that organic brand that I find most galling: the intention is not to achieve the provably most ecological and healthy foods, but to disavow any method with a hint of modernity in search of a rose tinted pre-industrial Eden that never existed. Hence the outright ban on GM, even for species without any ecosystem/biodiversity concerns, managed in an ideal fashion. Hence permitting “broad band” pesticides while banning more targeted ones with less ecological impact, provided the former is old or “natural”. It’s nuts. Maybe typically *correlated* with better quality produce for various reasons, but by no means guaranteed to do so and in some aspects working in direct contradiction to that goal. Enormously successful as a “luxury/health/eco brand”, though.
For what it’s worth, though, I should say that we also quite often buy organic in our house… but typically that’s because places like nice farm shops more or less *have* to be certified organic to pull in the sort of customers who are attracted to such things. I’d buy our food there regardless of whether there is a Soil Association mark of approval… actually, for bloody-minded reasons I would probably prefer one that *hadn’t* jumped on the organic bandwagon 🙂
Andy Buckley: yeah, I buy organic because it happens to be what the local farm box that I get is – but I got it because I thought the “organic” tag was a bonus to aim for. Thanks for the link, I shall read that later.
Your point about GM made me chuckle because I am also against GM – not for any health scare reasons, but because the multi-corps behind it (Monsanto etc) are actually attempting to/have patented the genes that they have created. Once patented, they then “own” the crops and can dictate who can farm/the prices of their seeds.
Not just that, but they create crops that don’t produce seeds, forcing the farmers (mainly in developing countries) to have to re-buy seeds from them every year.
Thirdly, they sell the farmers the pesticides that kill only the pests (and any other biological matter) that isn’t created by them. This is devastating for bio-diversity; but also means that the GM crops themselves are susceptible to all being devastated at once if there is a problem, because everything is genetically and physically the same (no bio-diveristy).
So, after the farmer has forked out all his savings to buy some seeds from a GM corp, they are all devastated by a new type of blight the following winter. He is now destitute.
And once GM is introduced into the environment, it is difficult to contain or rescind, due to cross-pollination and irreparable environmental changes. Monsanto aren’t pushing GM from the goodness of their hearts or to help world hunger as their press releases always emphasise (if they happen to feed more people, it is purely incidental), they are doing it to lock the developing world into yet more abusive trade contracts with corporations/the developing world. Once we’ve shafted these people over, the only winners will be Monsanto and their ilk.
Anyway – that’s my GM rant over! Normal service is resumed 😎
Hmm, I didn’t close the italics properly… Feel free to read the rest of the post in a sarcastic tone 8-D
If your concern is to limit environmental impact Ben maybe you should frequent your local farmers’ market. I have yet to see any credible evidence that organic is environmentally better, since he inevitable consequence is lower yields and more waste. I suspect it’s too complex to unpick without extensive resources.
*Way* off topic now, but hey ho… I can’t resist a comment on the GM thing 😉
There are definitely ethical issues over the legal framework and patent system where genes are concerned, but there are some inaccuracies in what you said. For example, the “terminator” gene has been patented but never been used and since 2001 there has been a de facto moratorium on its use — see e.g. http://skepteco.wordpress.com/2012/09/02/the-truth-about-the-terminator/ , http://kfolta.blogspot.fr/2013/08/this-is-copy-of-what-was-written-for.html , http://www.npr.org/blogs/thesalt/2012/10/18/163034053/top-five-myths-of-genetically-modified-seeds-busted . As Kevin Folta’s article (the second link above) points out, year-on-year selling of seed to farmers (by big corporations, for what it is worth) has been normal practice in farming for a long time before GM, via hybrid crops. I think the biodiversity side is rather more nuanced as well.
Definitely not black and white, but my feeling is that while Monsanto et al have undoubtedly behaved reprehensibly at time, there has been more disinformation from the anti-GM rather than pro-GM side. And at the end of the day, GM is an *option* for farmers rather than something they are mandated to use: if the cons outweighed the pros (in a rational, disinformation-free setting) then the products simply wouldn’t sell. (That is the reason that terminator crops haven’t been marketed: given the PR stick about them, they’re now commercially unviable despite there being non-GM crops with the same characteristics.) The caveat about disinformation is important, though: the various forms of quackery exposed on this blog wouldn’t find any victims/customers if they were up-front about their effectiveness and they were always judged on rational grounds.
Andy Buckley: yeah, sorry to go wildly off topic, so this will be my last mention of GM (I promise!)
The thing that you said about farmers not being forced to buy GM is sort of true at the moment. But, from what I understand, clauses in aid/trade packages to the developing world are increasingly mandating that those countries are tied into contracts with GM companies, therefore they are increasingly being mandated to use these products. Once people are contractually obliged to buy your products, you can more or less do anything that you want to them.
I understand that I am sounding a bit like an unhinged conspiracy theorist, but I promise that I am not that far gone! I just have my suspicions and reservations, because no multi-national corporation is every altruistic; and if it is to the disadvantage of those in the developing world, then that will not stop them doing something awful. After all, our aid/trade contracts with the developing world are already quite abusive and immoral currently. Throwing agriculturally devastating products into the mix isn’t that much of a step into the breach 😎
@Andy Buckley
Having done some “near organic” farming, I would say the land used is actually much less than conventional agriculture, not twice as much. Row spacing and plant spacing can be as close as the plants allow, not dictated by tractor tires.
The labor involved: hoeing, pulling weeds, training vines, etc. is a whole lot more than machine supported agriculture. It makes “getting closer to the land” a real experience.
There is a middle man distribution system growing that should help reduce the carbon footprint of organic or similar agriculture, but it cuts into the revenue of the farmers.
It will be very interesting to see how this has evolved in 10 years. Will the organic standards be flexible or inflexible? Will new marketing schemes be created? Even more important will be how amenable governments will be to small gardens located where there is sufficient sun.
As far as I can tell, neither organic certification nor large scale organic farming have anything to do with not using machinery. Non-organic, hand managed farming could also claim the same increases in space efficiency (I don’t know how big this effect is) but that type of farming dominates neither conventional nor organic commercial production. I was basing what I said on studies like from Nature 485, 229-232, 10 May 2012, doi:10.1038/nature11069:
“The average organic-to-conventional yield ratio from our meta-analysis is 0.75 (with a 95% confidence interval of 0.71 to 0.79); that is, overall, organic yields are 25% lower than conventional”
(as linked from http://www.marklynas.org/2012/07/how-land-inefficient-is-organic-agriculture/ which addresses this specific question)
I”m sorry but all you people on here are some of the lowest of low. This man did what is only common freaking sense, it worked-his precious boy made it and you guys wanna tear him down every chance you get “reminding” HIM- how dangerous HIS- line of thinkining is? This guy who’s treatment worked? While the other kids whom were given aggressive “TREATMENT” according to their own studies-are the ones that….don’t-usually-make-it?!?! You guys really are a special kinda stupid-not to mention heartless.
There is no evidence that Wright’s treatments worked. There is plenty of evidence that he was a thief and a fraudster. Care to continue?
This is the model pioneered by CANCERactive, but with the additional evil of actually stealing the money rather than using it to promote more bullshit.
The Charity Commissioners are not interested, even though these charities clearly endanger vulnerable beneficiaries, and Trading Standards do nothing about the flagrant breaches of the Cancer Act.
We can thank the influence of cretins like Tredinnick in parliament for spreading the idea that this kind of woo-mungous nonsense is anything other than evil self-interest.
Thanks for promoting my book The Amazing Cancer Kid – which tells the story of Connah Broom who wasn’t cured by two courses of chemo but who is alive today because of therapies that you consider to be quackery, unproven or disproven.
BTW you scatter these words round like confetti so presumably you know what they mean. Can you tell me the current status of surgery, chemotherapy and radiation on the proven-not proven-disproven axis?
You say: “Most of the time, what I am doing is spotting common errors of thinking and argument,” – this is what you say on your personal description.
Oh my. Where do I start?
What about this:
You wrote: “Their doctor had been keen to stress that they could give Connah occasional treats with fast food and so on and not to worry. And that there was no meaningful difference between ordinary and so-called organic food.” .
Not true. So the first error is to mis-state the truth. The doctors didn’t have any objection to the kids having fast food 3, 4 or 5 times a day because the doctors don’t think that diet is essential to health. If they did then they would make sure these very sick kids were properly fed. Now if you think that is a sensible position to take in relation to diet I would be interested to hear it.
A second error is to make unsupported assumptions – in your case the assumption that the doctor is right. Why? Presumably, though unstated, because he has authority, because he is ‘the doctor’ and everyone knows that doctors are always right.. This is a very common error of thinking and argument. Your entire piece is saturated with this kind of insidious belief system – whoever has authority is right. I know what we call that kind of position in the field of politics.
So, let’s have some critical thinking:
If there is an action that is intended to achieve an particular result – and if the result is subsequently achieved, it is reasonable to state that the action caused the result. . Connah started on the organic-filtered water regime and very quickly measurable benefits were seen. Your preferred analysis is that ‘no one knows why it happened’. Hmmm? You state this simply because you refuse to acknowledge that a very reasonable connection exists. And why do you refuse to acknowledge it? Not on the basis of evidence but because you have a pre-existing belief system that refuses to admit the possibility of such a connection. Arguing with people like you is a waste of breath.
Hmm. You employ the “post hoc ergo propter hoc” fallacy rather a lot, don’t you? You also seem to be assuming that Andy Lewis has made assumptions that he hasn’t actually stated. The most benign interpretation of this is that you seem determined to misrepresent your inferences as being his implications. Now, your experience may differ, but mine is that conversations are so much more productive when participants respond to what the others actually wrote, and don’t pretend to be able to know that others have opinions that they haven’t asserted.
I see from your (presumably self-penned) description that you are indeed a “creative writer”.
Hi Jonathan,
I suspect the reason you have found arguing with sceptics to be ‘a waste of breath’ is because you appear to offer very little beyond snark and anecdote.
You start off with an unevidenced statement and then things go further south. More specifically, you state your belief as to why Connah is alive today, but don’t explain how you arrived at this conclusion.
Perhaps you can explain why you felt able to dismiss the alternative reasons for his survival?
With respect to the current state of cancer treatments, I would offer this:
http://www.cancer.org/research/cancerfactsstatistics/
As a good starting point.
You then present another, unevidenced, assertion that the doctors caring for Connah didn’t think diet was essential to health… this seems unlikely, given that without diet, one tends to do rather poorly. Perhaps you misunderstood their position?
Again, evidence of this position would remove the element of ‘he said, she said’ from your allegation.
Furthermore, when it comes to deciding whether a treatment is likely to be beneficial or not, citing the existing scientific evidence is not an appeal to authority, rather it is an attempt to avoid being mislead by personal bias…
Presumably you are as yet unaware of the adage, “correlation does not imply causation.”
If you wish to change minds, please offer some robust evidence to support your assertions, that is how to argue with (and, more importantly, convince), a sceptical audience.
Thanks
MadGav
A doctor who believes that diet has no relation to health is something I have yet to discover: is this really an accurate and unbiased description of their medical advice? If so, I’m very surprised and agree that it sounds like the health advice given could have been better (speaking as a total amateur in that regard, but one with a few medical people in the family and a general interest in the area.)
However, if they had said something more like that the occasional hamburger won’t kill you (in the context of an otherwise balanced and proportional diet) and that there is no evidence that water filtering or organic veg will cure cancer, as far as I’m aware they were spot on. Which was it?
I have a feeling these replies are going to make good comments for this amazon page.
Most normal, logical, and sometimes intelligent, people listen to doctors and scientists because they have studied medicine and science. I wouldn’t trust someone’s scientific or medical opinion on science or medicine if they didn’t know anything about science and medicine. The same way that you wouldn’t trust my architectural opinion on the architecture of your house if I hadn’t, in any way, studied architecture.
I’m guessing that, like all other normal people, you employ an important dose of scepticism in all other aspects of your life. You are just asking us to stop using ours when it comes to what you do with your cancer “treatments”.
But, Meridian, aren’t you forgetting that being in ‘the media’ trumps all qualifications 😉
“The doctors didn’t have any objection to the kids having fast food 3, 4 or 5 times a day because the doctors don’t think that diet is essential to health. If they did then they would make sure these very sick kids were properly fed”.
Eh? I don’t believe you. Doctors are always banging on about our diets. GPs are always telling their patients to better their diets. The NHS launch an updated healthy eating initiative every 6 months or so:
1. http://www.nhs.uk/livewell/healthy-eating/Pages/Healthyeating.aspx
2. http://www.nhs.uk/Change4Life/Pages/smart-restart.aspx?gclid=CJbQ27_4ubkCFbHItAodKQ4Amw
So, I’m sorry, but what you said just isn’t true, is it?
“If there is an action that is intended to achieve an particular result – and if the result is subsequently achieved, it is reasonable to state that the action caused the result.”
No. Not even in the slightest. Have you ever studied science? How you can call that stance “critical thinking” is alarming. This is an awful and dangerous way of thinking. Jesus.
Quite.
My dog has the intent of chasing off the postman. He believes barking fiercely will do it. He barks and the postman turns on his heels and leaves. My dog is satisfied he caused the postman to go. After all. It works every time.
I am sure no one thinks like my dog, do they?
Jonathan Chamberlain,
Your comment is of great concern to anyone with an understanding of neuroblastoma. You appear to suggest that you know that someone has been cured by alternative treatments from neuroblastoma.
If you haven’t already, please consult a neuroblastoma specialist or two who will explain to you that this is a disease characterised by it’s heterogeneous nature. Spontaneous regressions are not just occasionally seen but regularly seen in this disease. In fact observation without treatment is actually the preferred course of action in certain presentations of the disease, where the likely outcome is complete regression.
A lack of professionalism and research is not wanted in books about children’s cancer. I have seen first hand the lengths families will go to try and help improve their children’s chances of recovery. If you can’t raise your game, I suggest you should stick to children’s story books as comments like yours cause a lot of damage.
Kevin Wright may have been judged to be guilty of stealing from children’s cancer funds, but in my opinion those who lead families to people like him bear a moral responsibility too.
Regards,
John Rogers
To help identify the cause of the regression perhaps you could advise how long after the 2 courses of chemo the treatment by eating food and drinking water began?
I so totally agree with you. Diet is the essential cure to all illnesses. Doctors know it well. All serious researches say it times and again. Eating clean untreated fruits, grain and vegetables is absolutely critical. Doctors have absolutely no proof that chemotherapy and radiotherapy work. In fact they know that patients are more likely to die sooner. Researches show that even surgery such as mamectomy followed with chemotherapy and radiotherapy actually destroy the ability of the patient to regenerate cells that might be able to read the DNA information that allow the repair process which is the basis of the activity of the living beings’cells. Cancer cells only proliferate because they are unable to read the next cells information to create new cells. Cells only know one process: the repair process driven by reading the information from the neighbours cells. The oxygen, the water, the nutrients, the energy (electrical pulse) generated all have a role to play that modern research knows to well. Why doctors want to use swift but damaging mode of treatments is the same deliberately dangerous decision to do a cesarian on 90% pregnant women, when this method of giving birth to a child should be a very last resource. It has been proven that the future mum’ s body when given the chance to go through the whole process of labour, provide a huge spectrum of antibodies through the umbilical cord at full term, and have a clear importance on the psychological health and future wellness of the mum and the body, ensuring also the breast feeding which is essential takes places in the best conditions…. Still as soon as a mum reach the hospital the staff will chooses to interfere without delay rather than making sure that a natural birth takes place. Calculation of the datefor the baby to be due are wrong, based on assumptions calculated for white babies hundred years ago. Mothers who want to give birth naturally have to fight the system. But they also have to live the consequences of bringing up babies who before they are born are already subjected to over-medicalisation. As a medical professional, a doctor’s wife and a mum with a long experience of working with medical ‘National Health System’ in many different countries who have given up their own knowledge to follow the Western Medecine approach, I can only advise parents to opt as much as much as possible for zero medicine. I have done so for the last 40 years. A baby starts in the womb and this is where you have the choice to give your future child the chance to live clean and safe. Starts today. Starts now with zero process food, zero chemical, zero pesticide, zero bleach, zero plastic, zero toxic. Most doctors have already opt forth at solution for their own children a long time ago. They just don’t preach what they live.
Good grief.
Alan – I share your level of good griefedness.
I ploughed through this Gish Gallop style rant wondering whether life was long enough to refute the condensed nonsense.
Towards the end I realised I was probably hallucinating as I convinced myself that she said she was a “medical professional” and that people should eschew medicine.
Still, trying as ever to be even handed, at least I now know where embryological development begins (the origin of my daughters always confused me). Although (putting my pedantic hat on) I suppose you could argue that a baby “starts” in the testes and the ovaries, or possibly at a drunken party.
What language are you writing in? It looks a bit like English, but the words don’t make coherent sentences.
It is regrettable that parents are willing to listen to quacks and charlatans regarding the treatment of serious disease in their children. However, I am uncertain that anything can be done about this and society must accept that some children will be sacrificed on the altar of their parent’s stupidity.
One hopes that a steady increase of public health education and knowledge will, over time, lessen the toll that such daftness imposes on unfortunate children.
David Amies
Well, I certainly set the dogs yapping. Here’s a question for you. You are in a dark room and there is a switch. You press the switch and the light comes on. You then press the switch and the light goes off. How many times do you need to press the switch before you know there is a causative relationship? I can see you muttering about the post hoc propter hoc issue for aeons but most sensible people will ‘know’ that there is a connection after 3 repetitions of the action. They certainly would if the switch was attached to something that delivered an electric shock.
If the doctors thought diet was central to health don’t you think they would make sure that hospital food was palatable for the kids?
You guys are just going through your cultic verbalisations but there is a real world out there. All you have to do is look.
Paraphrase. “You’re on a London Underground train, and in rush. You use the Doors Open button to help you exit faster.
How many times do you need to press the button before you know there is a causative relationship? I can see you muttering about the post hoc propter hoc issue for aeons but most sensible people will ‘know’ that there is a connection after 3 repetitions of the action. They certainly would if the button was attached to something that delivered an electric shock”
London Underground trains have doors open/close buttons but they’re non-functional. The doors are solely operated by the driver.
A perfect allegory for your nutribabble. The only difference is you mistake criticism for your elementary knowledge of dietetics as personalised. That would only be a valid assumption regarding your morality and ethics if you realised how little you knew about diet but carried on selling your ‘advice’ .
Hi again Jonathan,
I see you’re still relying on the same shtick… which I suppose is easier than addressing the questions actually posed to you.
So again:
How were you able to rule out the alternative explanations for Connah’s survival? (Obviously you cannot use your light switch analogy here, due to the many confounding factors).
I think a clear difference between the ‘functional light switch’ and ‘dog-obeying postman’ analogy is that the light switch is a light switch. It was invented for this purpose, and can be reversed-engineered by any suitably knowledgeable person who was naive to that fact to have a clear relationship, through electricity, to the device hanging from the ceiling. Run this line of enquiry on the post-man’s behaviour, and it would be very surprising to arrive exclusively at a dog-obeying delivery person (especially given that he retreats regardless of whether he was being barked at).
Jonathan – even electrical switches may not due exactly what we think they do.
http://www.bbc.co.uk/news/magazine-23869955
As soon as delay and variability is introduced into your light switch example, there sets in ambiguity over cause and effect and the possibility of being misled.
With cancer, the confounding factors multiply enormously – merely seeing someone get better, or nor die, tells us little about the efficacy of the actions we may have been taking.
Are you able to concede that point?
Hospital food is not of optimum quality for anyone, including kids, because we have an NHS with a restricted, and tightening, budget. Therefore, savings are made in areas such as food (and, in some cases, according to recent news, cleaning) in order to maximise funds available for things like offering the best treatment to the widest range of people.
If you went to a private hospital, where you’d have to pay thousands of pounds out of your own pocket, I’m sure that you would find the food nearer Michelin standards…
You are a baby lying in the dark. When you cry, the light goes on. How long does it take you to realise that it’s not your crying that makes the light go on?
The answer of course is that if you are a quack you never find out, because the experiments you conduct are designed to prove that crying makes the light go on, and any results that don’t support the hypothesis are waved away or ignored.
You guys probably take anecdotal evidence with a pinch of salt and despise chiropracters – so this story that I am copying from another site will not change your minds. So be it – but contemplate the human dimension – imagine the person who had the following experience was your sister or mother or wife. Start thinking with your heart:
have Radiation induced Lumbosacral Plexopathy from my radiation treatments. 2 months after my treatments ended I could not climb the steps anymore. Physical therapy did not help. My legs continued to deteriorate in 2012 and I was basically almost wheelchair bound. I’m 39 years old. Not only did this disease ruin my fertility but the treatments were leading to physical disability. My horror story with hpv and cancer started when I was only 26 yrs. old. My life was forever changed and all innocence in life was gone from that year on. I lost all strength in my legs and fell many times due to leg weakness. I could barely walk from the car to the entrance of my job. While laying on the floor, I could barely lift my legs. My oncologist missed this diagnosis.
I found an extremely gifted Chiropractor by the grace of god. He diagnosed me and created a treatment plan. This man has forever changed my life. 8 months of hardcore therapy and I can do 80% of what I was able to do before cancer. I am about 70% rehabilitated. I started out learning to lift my legs again with my Chiropractor’s assistant. I was so weak I could not lift leg weights so they would use rubber leg bands to build strength. Today I can lift 25 lbs using the leg extension and 35 pounds on the leg curl machines. I can clean, walk long distances and climb hills. I still cannot run, but I am determined to get there. I want to do a 5k one day.
I have always felt I lost all my rights to a quality life once I got cancer and was put through the treatments that can create life altering side effects. I never knew I was signing my name to the damage I have incurred. I have found very few people who can identify with me. I realized nobody goes unscathed by cancer treatments. They are hardcore, but where do you draw the line between acceptable and unacceptable side effects? There is no line.
Hi again, Jonathan,
You start so well, apparently recognising that an unevidenced anecdote is not a substitute for empirical data… but then you offer one anyway (and with a generous measure of ‘appeal to emotion’ to boot).
Contrary to your suggestion, I do not ‘despise’ chiropracters. It is simply that the concepts of ‘subluxation’ and ‘innate intelligence’ do not stand up to scientific scrutiny.
Perhaps you could try to answer the questions posed… not holding my breath, but it really is the only way you’re going to change minds.
I don’t despise chiropractors either – unless they are also antivaccinationists, or they use neck manipulations, or they claim to treat anything other than musculoskeletal pain.
Unfortunately the 99% of bad chiros seem to give the 1% a bad name…
I would need more information before I believed exactly what was written in this account. The woman would need to be interviewed and examined and her medical notes would need to be studied.
Incidentally, every single case where further investigation has taken place in these circumstances, it turns out that the alternative therapy does not withstand the scrutiny.
As it stands now, chiropractic has not only been unproven, but disproven over and over again. That’s why the “story that [you are] copying from another site will not change [our] minds”.
Just a little comment about chiropractors: after suffering a severe Whip-lash with extensive neck and back injuries some years back, traditional treatments did not help me at all, and it was only when I started chiropractic treatments which lasted for nearly 4 years, that I could see any improvements at all.
The evidence suggests that chiropractic would not have been the cause of your improvement – and there is absolutely no evidence that a four year treatment plan can do anything whatsoever. I hope you did not pay too much money.
What evidence are you talking about?
That would be very interesting to find out, because my “before and after situation” with relation to the chiropractor treatment would be living on painkillers 24/7, and then functioning very well in my daily life with only the very occasional need for medication after 4 years of treatment.
Chiropractic has been unable to demonstrate benefits in trials over and above basic pain killers or moderate exercise. There is no good reason to think that it helps with the course of such conditions.
Over four years, you would expect some improvement. I too have suffered from similar conditions and I have improved enormously without having to fork out to a chiropractor week-on-week.
No disrespect Neil – I have no idea about the extent of your injuries and/or reported recovery – but do you not see the flaw in this statement:
“…and it was only when I started chiropractic treatments which lasted for nearly 4 years, that I could see any improvements at all.”
4 years is a very long time, and I’m afraid you have no idea how your back problems would’ve progressed by themselves without any treatment. I imagine it’s entirely plausible that you would’ve started to notice a difference by year 4 regardless…
For your information, for a period of 7 months after I was involved in a very severe car crash, I was having physiotherapy, as this was what traditional medicine suggested to be the best treatment, to try to reduce the pains I was experiencing, so that I could try to live a almost normal life. I was diagnosed with a severe whiplash injury, affecting c5-c6, and also injuries to my l5-s1 (lower back), which the doctors were not sure how I survived.
I agree that 4 years is a very long time, but with the alternative most likely being a life in a wheelchair, I know what I would prefer. I also agree that I might have noticed a difference after 4 years anyway, something “even” my doctor of traditional medicine said most likely would be in a wheelchair, if I had not had the chiropractic treatment. This was also confirmed by neurologists and surgeons in the hospitals where I was treated. BTW, Not sure if you know, but a chiropractor spend about the same number of years studying your back and skeleton, as a medical doctor spend in weeks doing the same during his study, which can be up to 7, depending on in what country you do your studies (Direct quote from my GP).
By the way, it does not matter how long chiropractors spend studying nonsense, it is still nonsense.
What Nonsense? What is nonsensical is what seems to be a total disregard from yourself and those who agree with you, for anything except what you accept as the holy grail. This in particular seems to relate to alternative treatments for cancer and other medical conditions, and also natural diets, containing natural supplements without toxins being used in traditional food production.
I think the rationale behind the arguments expressed here are summed up in umpteen blog posts, articles, books, etc. As is the lack of evidence for the alternative treatments you mention, and the variety of extraordinary ways in which humans can be (self-)deluded, especially when they want to be. That’s why objective, meticulously controlled trials are important. But this has already been said many times, so I don’t suspect this contribution will suddenly convince you.
What I find interesting is the way that you frame the food part of Kevin Wright’s treatment regime in your last sentence: “natural diets, containing natural supplements without toxins being used in traditional food production.” There are a lot of seductively appealing words here, but what do they actually mean and what relevance do they have to serious illness? What is a “natural diet”? Is “natural supplements” a contradiction? In what sense is organic food “without toxins”? Why would it matter/help that the food production is “traditional”?
Can you see why there is an immediate skepticism that such marginal differences could have relevance to a very serious disease? And why there can be several *more* plausible alternative explanations for remission of neuroblastoma, from selection bias to natural progress of the disease, given the very flimsy evidence for the dietary cure-all.
My comment was not about what you call Kevin Wright’s treatment regime in particular, but more about what seems to be a disregard for anything alternative and not traditional.
I agree that traditional medicine is important, but so is an open mind to alternative treatments.
Also, to avoid any possible misunderstandings about my opinions of Kevin Wright. Under no circumstances am I supporter of, or condone the criminal acts committed by him with regards to a number of different charities, but I cannot criticise him for questioning the “establishment” with regards to his sons medical treatment, or his wish to try alternatives. Neither can or will I criticise families wanting to try alternative treatments for their children, when all else seems to fail. I would also like to meet the parents or families who would not want to “leave no stone unturned” in an attempt to help their sick children.
I’m sorry, Neil, but I just cannot see how a mind which brooks no denial despite evidence and cogent argument to the contrary can possibly be construed as “open”. On the contrary, it is the gold standard of “closed”.
Similarly, that part of medicine which could be construed as “traditional” is perhaps the theoretically impoverished, “suck it and see”, mainly inductive approach rather than modern, evidence-based practice (admittedly, still in short supply).
Finally, Neil, I may be right in seeing in your closing paragraph a nudge towards implying that a non-sceptical stance has the monopoly on compassion: alternative” is somehow more humane and offers hope and reassurance.
We tend to hear of, heed, and register only those prayers which are answered, not those countless others which disappear fruitlessly into the ether.
“all innocence in life was gone”….WTF?
Never think with your heart. Demonstrate compassion, understanding and positive support through exercising rationality, always with a due sense of the balance of evidence. Sometimes you have to compromise because the “facts aren’t all in”. But that, too, should be a rational process.
1. There was no alternative explanation
2. The NHS is poor so can’t afford good food. That is a desperate answer. No problem spending tens of thousands per patient on drugs that are actually disproved. (Some chemo – 5% of cases? – does the job I grant – but most chemo has no evidence to support its use and a great deal of evidence that it causes extreme pain and then you die on schedule anyway. So actually disproved but used anyway. This is what you prefer? There is a great deal of anecdotal evidence – strange that those who do follow a nutritional approach do so much better than those who don’t. You guys want TRUTH all the rest of us want is sensible signposts for future action. If food was considered important then it would be good.
3. Every anecdote is an example of people pressing buttons and getting an answer – a refusal to credit anecdotal evidence is a big mistake.
3. A refusal to think with your heart is a great mistake. I believe there is proof of this.
I won’t be writing any more here but I always comfort myself with the thought that those who are rabidly in favour of chemotherapy and radiation will no doubt choose these approaches if they get cancer. They will then discover the truth of the matter first hand. Experience is a great teacher.
Jonathan,
It is always amazing to me that people who support alternative medicine find it absolutely impossible to understand that mere observation of events can tell you nothing about causality.
Responding to your points,
1) Can you think of no other explanation? Let me offer you one: you are observing the natural course of illness in this individual.
2) You are quite wrong about chemo and radiation. But I expect it has been explained to you before. Perhaps though, you could defend you claim that ” those who do follow a nutritional approach do so much better than those who don’t”. Can you point to any paper that supports your view?
3) Pressing a button (such as on a pedestrian crossing) does not give you an ‘answer’. You may observe events (such as the little man going green) but you cannot claim that you can now claim causality between the the events. Do you understand this? (I expect not) – or if you do, you will bravely march on, e.g. see
http://www.theonion.com/articles/true-courage-is-knowing-youre-wrong-but-refusing-t,33742/
second 3) The heart is very good at pumping – not to good at thinking. I try to use my brain. But I guess you know that too. What you mean is – I prefer to believe what I would like to be true about the world rather than what the evidence suggests is true.
Your last comment about sceptics getting cancer says more about you than anything else. What a rather disgusting attitude.
Hi again Jonathan,
May I ask how you came to the conclusion that there was no other explanation for Connah’s survival? Did you take into consideration the natural history of the disease?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1611711/
You appear to be picking random numbers out of the air with respect to efficacy of chemotherapy or radiotherapy – do you have some research you could cite? Can I point you again to the link I offered regarding the current state of cancer treatment?
Every anecdote is a case study with an n of one (and without any attempt to correct for bias). Using them in preference to large scale studies is at best foolish. The plural of anecdote is anecdotes (not data).
Suggesting ‘other ways of knowing’ (such as thinking with a muscle) is not going to be very useful when dealing with reality-based sceptics. Perhaps you could have another go at evidencing your wild assertions?
And I see your dubious comment re. sceptics getting cancer has been dealt with already. Stay classy, Jonathan…
OK Final word – I’m off on my hols tomorrow.
Observation can give no information about causality? Give me a break. A man hits another man and the second man falls down on the ground clutching his face. Why did he fall down? Oh I don’t know. Just because I observed someone hitting him doesn’t mean that was the cause. I know what a jury of 12 sensible people would make of that argument.
One observation I agree in some circumstances is not proof or even strong evidence. But if there is a repeat and the same result is observed then it could be coincidence or it could be confirmation so that is why I suggest three repetitions (see earlier message) provides sufficiently strong confirmation for me to accept for practical purposes that we are dealing with cause and effect but if a risk benefit analysis was positive I would go with two or even one incidences as a guideline for action (the search for TRUTH is a religious enterprise and can rarely be established in human matters)
I deal with some of your issues in a new book that I have written Sixty Shades of Cancer.
As to other explanations it is clear that you haven’t really read the book The Amazing Cancer Kid. The doctors did not offer any other explanations. When questioned they have always said “We don’t know!”
The facts: We have 3 kids -Bobby, Connah and the daughter of Kathy Downer – who all followed the same protocol (more or less – and they all had a similar result, which was not achieved by any other kid that we know of who didn’t follow the protocol (protocol? 100% organic, filtering tap water). This is quite sufficient evidence for me.
Hi Jonathan,
Nothing new to offer, I see.
Offering overly simplistic comparisons when discussing something as complex as cancer treatment isn’t going to convince.
I can understand how your certainty can seem comforting. But the reality is that you don’t know the reason Connah survived any more than the doctors do. They can speculate, but definitive proof is not offered by a single case (or even three cases).
The fact that you believe three apparent repetitions is sufficient proof of efficacy is merely further evidence of your inability to recognise your own biases. Maybe when you’ve been reading papers on cancer treatment you’ve wondered why they include so many subjects…?
Perhaps if you re-read other comments, you will notice that many instances have been cited where what seem to be causal effects are in fact nothing of the sort.
In effect, you’ve offered an open label, un-controlled case study with three participants as sufficient evidence that your ‘protocol’ works… out of interest, what rate of false positives would you expect from that method?
It would be nice to believe that you’d deal with any of these issue in your forthcoming book… but you’ll understand if I take that promise with more than a little salt?
OK. Let’s say you have three people who say they have had a bad back. All three went to a chiropractor and within a month all were better. Proof that chiropractic works or just an observation that for most people bad backs clear up on their own within a few weeks.
Another example. Three people ring into a radio show to say their cancer has been cured by Reiki. This particular cancer kills 90% of people with 2 years and for all three people it has been 2 years since diagnosis. Proof that Reiki cures cancer? Or just the three of the 10% lucky people and they have managed to call into the radio station? In your response, remember that dead people cannot make calls to radio stations.
It is very clear from your and other people’s comments in this tread that you have next to no knowledge about Connah’s actual illness and the treatments he has had. Before you make too many further comments, I suggest that you wait until you have had the chance to read the complete book, when you hopefully will see that you are the one who will have questions to answer.
Thank you Neil – my opinions and comments are indeed based on having read the complete book. The views expressed on Wright, diet and alternative treatments are dangerous nonsense. But I am glad Connah is doing well.
Could you please elaborate on “The views expressed on Wright, diet and alternative treatments are dangerous nonsense.”
Jonathan Chamberlain said:
He had a seizure. He had a stroke. He was shot with a high-powered rifle. He had heart failure.
1. He had a seizure. He had a stroke. He was shot with a high-powered rifle. He had heart failure.
Yes but he was hit in the face. Hitting someone in the face would produce the kind of response manifested. We don’t need to go any further for an explanation. If you were on the jury and you suggested these as possible options how do you think the other 11 people will respond?
2. Three people ring into a radio show to say their cancer has been cured by Reiki.
If I was aware of that fact then I would definitely have reiki. Is it proof? Of course not but is it a signpost – definitiely it is. If three people are different from the rest of their cohort and they all did the same thing – would I do the same? You bet.
What is interesting is that none of you can read the signposts.You are blocked by your ability to conjure up an endless list of possible alternatives that seem to you to be also likely – though presumably some are more likely than others you don’t take this into account. So I would characterise this hyper-rationality as digital (on-off, black-white, true-false) .
3.
No, you misunderstood. His heart failed just as the blow was being thrown. Whether the punch hit him or not, he was going to collapse. What caused him to collapse?
Hi Jonathan,
You seem to be doing a good job of reading everyone else’s comments and then totally missing the point of them.
Imagine for a moment that the natural progression of neuroblastoma is that 95% of patients survive 3 years… (the statistics are in that paper you seem not to have addressed).
If you took 3 individuals and looked at their 3 year survival rates following treatment with protocol ‘x’, on average, how many of them would be alive? Do you think their survival is likely to have anything to do with protocol ‘x’?
How many individuals would you have to treat with protocol ‘x’ to see if it offered any meaningful benefit over no treatment at all?
Now, please tell me how you feel able to rule out the natural progress of illness with a case study of only three individuals?
Jesus Christ!
Hi Jonathon
Actually, I think you’re probably right to argue the probability of your punched man falling to the ground because a clear strike to the face. When we look at the other possible causalities – which of course do exist – the likelihood of any other fanciful suggestions proving valid are very slim. However, we should also assume that in a tiny minority of cases, assumed victims of assault are falling to the ground (even clutching their faces) for other reasons. But it is a very bad analogy. I say this because physics and biology shows time and time again that a punch to the face often results in people falling to the ground clutching their faces. Flicking light switches are the same (although not a 100% guarantee of causality). However, when a minority of people seem to recover from complex illnesses following ‘treatment’ ideas that have no evidence or robust scientific explanations, when a whole host of other possibilities haven’t been eliminated, then we are right to draw hypotheses for proper statistical testing, but very wrong to claim causality. This is how we know Victorian doctors’ positive anecdotes about blood-letting were mistaken, to the point of deadly in many cases. I expect you get this, and this post will wash straight off of you…
Signposts? Science has a coherent explanation for the delusion that reiki works, the misleading “signposts” are just that: misleading.
Hi Jonathan,
I don’t think Andy said that the three survivors were the only cancer victims who used reiki. Indeed, he added a note to remember that dead people can’t tell their stories.
So it’s possible that hundreds of the dead also used reiki but died, as expected. It’s also possible far more than three people survived using recommended treatments – though I note you never asked for any other results.
So why would you be convinced by the three radio callers, but not by the majority of the survivors? Is it simply because they did something “different” and survived, or is it because they spruiked their stories on the radio while all the other survivors just got on with their lives, without seeking fame?
In fact, why would you even believe their stories?
From the sidelines here, I think you made the case for Andy and his blog followers rather well.
Thanks.
Yes. That is quite right. We have no way of knowing if Reiki had any effect, There could be dozens and dozens of people that tried Reiki and now all dead. They do not ring into the radio station to show that it is Reiki is almost certainly irrelevant to the outcome.
In the same way, we do no get cartoon books about children with cancer who ate organic food and then died. It would not be a best-seller.
“Imagine for a moment that the natural progression of neuroblastoma is that 95% of patients survive three years”
Mmmm. Not an nb parent then? Does that sound like you’re describing one of the deadliest childhood cancers there is?
Ok. Let’s define ‘survive’.
They are still alive three years later.
If you are lucky.
Are they fighting fit and living life to the full or are their bodies ravaged by the disease and their treatments?
It is actually stage 4s which has the favourable diagnosis. Discovered in infants under 12 months old.
Ask an oncologist what the chances are of EVENT FREE stage 4 neuroblastoma five years on (as in Bobby Wright, Emma Clittie, Drew Sorteberg, Connah Broom….)
And you ll get more like 15%.
Not even that if like Connah his cancer didn’t respond the the chemo.
And if you don’t believe that an oncologist wouldn’t recommend good food then feel free to check with my sons oncologist at Manchester Childrens hospital. My son was two. She advised we feed him the hospiral food (pig swill) and wash all his meds down with coke.
The key words were the first four – “Imagine for a moment “
Hi Nb Parent,
I clearly should have worded my comment better and for that I apologise.
My intent was to point out that a sample of three is insufficient to judge efficacy, clumsily I used a ‘lets pretend’ example because the statistics were much easier to calculate (specifically 1 in 20), this is why I used the phrase, ‘let’s imagine’. I did, however, point out that the actual natural history of neuroblastoma was detailed in the paper to which I linked previously.
I think you have pointed out the real issue here. Research has indicated that some children may need no treatment, but still may well recover. Scientists and doctors have identified this group and given it a name, stage 4S. The point being that before this had been identified, if you gave organic food and filtered water to one of these children you may have thought that these ‘interventions’ were the source of the cure.
Just looking into the names you suggest as evidence – at least a couple of those apparently had conventional treatment and responded well to it. This group of high risk neuroblastoma patients makes up a majority of the survivors. Finding two survivors that conducted special diets therefore does not really mean anything….
If you look at the reported details of the case of Connor Broom, he is one of a number of children in the UK and Europe who are long term survivors with evidence of disease. In this group children like him are not unusual – even in the UK, let alone if you look internationally. None of this means that whatever ‘extra’ treatment he has had doesn’t add any benefit – you just can’t say it does or doesn’t with any certainty. Hopefully Jonathan Chamberlain addresses this in his book – but I doubt it. Please see:
http://nbglobe.org/anr-2010-uk-group-reports-on-long-term-survival-with-persistent-neuroblastoma/
So what about the claims it helps with side effects. Again, hard to prove either way – but what is certain is that during induction chemotherapy for high risk neuroblastoma (where the treatment course is so intense) the initial reaction and side effects are severe. The medications are soon adjusted and the body seems to tolerate the remainder of the course better. I’ve heard several times that organic food helped with side effects at this point. Was it the organic food that really helped? The people pushing organic food aren’t best to judge are they? Whatever the case, families make their own mind up – but it is worth mentioning that some of the biggest risks to children at this point are from infection and lack of calories, not pesticides.
Regards,
John Rogers
You seem to have some knowledge about NB, so could you please give an educated explanation to the following: Connah’s family was told by the doctors to take him home, and make him as comfortable as possible, as traditional treatments did not do anything for him, and he would only have a few months to live at the most. This was not long before he would celebrate his 5th birthday. After this day, the only treatment Connah has had, has been alternative treatment including PDT and a strict organic diet. The number of tumours has been reduced from 11 to 1. Last week he started senior school, and he will celebrate his 12th birthday later on this year. If alternative treatments are no good, how do you explain Connah’s situation?
Because some kids actually do much better than the median.
NB family member,
Unfortunately many children have finished treatment without being clear of disease. Most of those will have had a similar conversation with their doctors, but for some of them (Like Connor) they did not progress but remain alive years later. The link I posted previously was an analysis of survivors who fit into this group from a European trial in the 90’s. Remember that the 62 children referenced were treated in the 90’s – before Kevin Wright or Jonathan Chamberlain. To quote the link:
‘The group reports that “some patients can be long-term survivors despite persistent disease.”’
It is great that Connor is doing well, but it must be understood that there is absolutely no evidence to say that diet and other Kevin Wright promoted treatments had any impact. There are hundreds of survivors who still had disease at the end of treatment, who didn’t do these ‘alternative’ treatments. The only ‘evidence’ being put forward is a single child when there are hundreds of survivors in the same position as Connor who haven’t followed this route.
Regards
John Rogers
Dear John,
Could you please comment on the following facts, in the light of your previous answer to me.
After Connah’s family was told there was nothing more the doctors (at the time at Alder Hey hospital and Manchester Children’s Hospital respectively) could do to help because of the extent of his NB, and that they should value the time he had got left to live, which they did not think would be more that a few weeks or a couple of months at the most, the ONLY treatment he has had, has been what has been based on alternative treatments, including a strict organic diet. Even if current scans of Connah has shown that 10 out of his initial 11 tumours can no longer be found, some doctors are still not willing to accept that alternative treatments have had any effect at all. Another side of the matter is that, because Connah’s family did go down the alternative route, there are doctors within the NHS who are refusing to see Connah, because he has NOT followed the “trodden path”. To finish off, all possible credit to Dr. Mark Gaze, who has kept an open mind about what is keeping Connah alive.
Andy Lewis
I apologise profusely for misunderstanding. It was 11pm and I was tired from all the cooking (from scratch, organic bla bla)
Have a good day
Absolutely no worries!
Bearing in mind the Charities Commission didn’t spot this
http://www.theguardian.com/politics/2013/jun/04/cup-trust-charity-watchdog-tax-avoidance
what chance they would look properly at any of these cancer charities finances and the risks they pose to those who use them?
As an aside I wonder how Jonathan justifies still publishing this book when it advocates taking life critical health advice from a convicted violent fraudster?
The Charity Commissioners do not, as far as I can tell, give a flying fuck whether the “public benefit” is an appropriate one or whether the trustees and officers benefit from the activities of the charity (as long as they don’t simply trouser the cash),
If they did, CANCERactive, the Homeopathy Action Trust, H:MC21 and many others would lose their charitable status overnight.
Question for Andy Lewis
Just wondered if you have any children yourself, or have first hand experience of receiving conventional cancer treatments?
Many thanks for your time in advance
Toni
Hello Toni
…if its not a personal question! Could you explain the relevance of your question to the topic in hand?
Hi there,
Certainly Andy,
Having just read the threads above for the first time I get the impression that most of the comments are in response to a gentleman who is the father of a child with neuroblastoma cancer.
Presumably his comments are based primarily on personal imperial experience, rather than on scientific or medical expertise in the field and I just wondered if your comments came from a similar experience.
regards,
Toni
Sorry for the error in my response, – autocorrect cut in and changed empirical to imperial.
My response should have read “Presumably his comments are based primarily on personal empirical experience”
regards,
Toni
Toni – the discussion is about if you can determine cause and effect from observation of single uncontrolled cases. My family status and my experiences with illness have no bearing on that argument.
Hi there,
Oh dear, I’m sorry if i’ve caused offence.
Of course if you don’t want to share the basis on which you draw your opinions that you share on this forum, that’s entirely up to you. I only asked because as a casual observer it is sometimes helpful to understand if comments are based on personal experience “anecdotes” – as Guy has helpfully pointed out – or whether they are formed from educational and professional experience.
I probably don’t need to point out that when considering an opinion based on a subjective experience, rather than an objective observation it is difficult to directly compare these opinions, – whereas if (for example), you had told me that you have had a very different personal experience with your own family, then it would be easier to get a balanced picture of how it might be for parent in this situation.
Presumably it might also be more helpful for parents who are also facing a similar dilemma with their own children, when it comes to making decisions about what treatment and other courses of action to chose that are open/available to them.
kind regards,
Toni
Toni
You seem to be dangerously close to suggesting that anyone who’s doesn’t have direct experience of childhood cancer cannot have a valid or worthwhile opinion on the subject.
Which is of course ridiculous.
You also seem to miss the point being made by Andy and Guy which is that the awful experiences of these families are entirely subjective because they are individual cases without controls. Observing and experiencing things first hand doesn’t change the fact that we / they cannot know with certainty what helped Connah and pretending to ‘just know’ is misleading to other families in the same position.
Hello Slipp,
Crikey, I’m not sure why you felt the compunction to write the following?
“You seem to be dangerously close to suggesting that anyone who’s doesn’t have direct experience of childhood cancer cannot have a valid or worthwhile opinion on the subject.
Which is of course ridiculous.”
I hadn’t realised that asking a simple question about where someone draws their opinions from could possibly be so inflammatory.
I don’t think I’ve made any reference at all to the validity of Mr Chamberlain’s comments. I was merely enquiring whether Andy’s comments were based on a direct experience of the disease.
Kind regards,
Toni
Toni,
You will have to forgive me, but this is a well trodden path by the supporters of alternative medicine. Apologies if this is not the case for you, but it is a common tactic to try to undermine critics of people like Kevin Wright to appeal to the emotional and subjective.
To repeat: it is quite possible to have deep concerns about such charities and their alleged cures whether you have direct experience or not – and as such, it is an irrelevant question to ask. It is a deep distraction to be arguing about each others’ right to criticise based on experience – we should be concentrating on the claims, the evidence and the science.
Hi there Andy,
I’m sorry if I gave the impression that I was in any way questioning your right to criticise based on experience. I was merely trying to understand the basis of your opinion and to therefore understand it better relative to the comments of Mr Chamberlain. I hope I have cleared up any misunderstanding and as I have also mentioned in my response to Guy I’m sorry if the board feels that I have wasted time with distractions from the topic at hand – I did not realise that this was a skeptics forum when I posted my comments, or that there were particular parameters around the form the discussion takes place.
Kind regards,
Toni
Hi again Andy,
Just to make it doubly clear, my original question had nothing to do with what Kevin Wright has or hasn’t done. It was to do with understanding other people’s experience of dealing with Cancer. I saw your comments in response to Mr Chamberlain’s regarding his experience of dealing with his son’s cancer and wondered if your comments were based on an alternative experience that you had had.
To be clear about where I am coming from:
I have a close friend (age 64) who was given just two months to live 3 months ago. He was previously on a cancer drug trial at the Marsden but was unable to tolerate the side effects. He is now undergoing an alternative course of treatment with a Doctor in Germany and (as I understand it) using other complementary therapies/supplements/organic food etc.
He’s having a really tough time, but so far he’s doing better than the prognosis and hasn’t given up yet. I’m interested to hear of other’s experience of dealing with cancer, whether or not conventionally or otherwise.
I would imagine that no matter how skeptical one might be of quacks (as Guy has termed complementary therapists in general), if one is given just 8 weeks to live, it’s understandable to consider if there are any alternative approaches that might be helpful.
kind regards,
Toni
I can understand that people will be desperate to try alternatives. But that does not justify people offering pseudoscientific and superstitious treatments. It’s exploitative and cruel. False hope.
Quacks play on many misconceptions – one of them in cancer is ‘you have two months to live’. No doctor would ever say such thing without heavy caveats. At any stage of cancer, people will respond and progress differently -as you yourself have said. Some may unfortuantly die very quickly, others will live much longer than is typical. Living three months is well within the range of outcomes that you might expect when a median expectation is two months. Some people may even live a very long time. But quacks will be quick to exploit these people and claim success and use them to sell their quackery to others. They will casually ignore all those that did not do so well. It’s dishonest and cruel. And we should not be tolerant of people who exploit such desperate people.
Hi Andy,
I’m not sure that caveats come into the equation with regard to my friend. He had one Kidney removed 10 months ago when he was first diagnosed and he now has about 10 per cent of his liver that is not riddled with cancer, so he’s not in a particularly good place.
I’m also not sure if the treatment he is receiving in Germany is conventional or not as it it involves surgical intervention and follow up Chemotherapy so I imagine it is just treatment that is not available in this country. It costs quite a bit, but then I guess alternative treatments are probably not cheap either.
I completely agree with you regarding the time scale regarding his outcome and I wasn’t suggesting that his (so far) outliving the prognosis was in anyway relevant to any side of the discussion here. Perhaps if all goes well and he’s still with us this time next year then it might be considered as an ‘anecdote’, but as statistical relevance appears to be the only benchmark that is recognised on this forum, I’m not suggesting that my friend’s experience is significant. – I only mentioned it so that you could understand where I was coming from and how I got onto this forum in the first place.
I guess the relevant point that I was trying to make earlier is that it is very difficult to compare like for like, because in many cases individuals chose alternatives only after they have tried conventional medicine, rather than opting at the outset to just use alternative therapies. I guess the name complementary speaks for itself, as I pointed out in a previous response, many therapies are prescribed as a support alongside conventional therapy.
Presumably (please correct me if I have misunderstood you here) when you wrote that:
“But that does not justify people offering pseudoscientific and superstitious treatments”
you are referring to any treatment that doesn’t have a scientifically verified (acceptable to the skeptics on this forum) randomised placebo controlled (I would guess?) recommendation.
I would be interested to understand exactly why you believe this to be the only acceptable course of action?
Are you concerned that individuals are wasting their money, or is that you are concerned that alternative treatments will have a negative impact on (contra-indications) the conventional treatments?
Kind regards,
Toni
I can only suggest you read my post here which tackles this subject in detail…
http://www.quackometer.net/blog/2012/03/the-totnes-cancer-health-centre-a-quack-pascals-wager.html
Hi Andy,
Thanks for the link to your long and informative article. It made for interesting reading, as did the comments following it.
I wasn’t sure are you the canard noir contributor or was that someone else responding on your behalf?
Kind regards,
Toni
Toni
Apologies for doubting the sincerity of your question, as Andy says playing the man not the ball is an extremely common tactic for those defending dubious treatments.
Slipp
Toni, you are aware, I hope, that “personal empirical experience” is usually known by the more compact term “anecdote”? And that the majority of cancer quacks are very adept at manipulating the beliefs of their victims?
You do know, don’t you, that this is the main reason that medical science had to invent the randomised controlled trial?
Hi there Guy,
Thank you for your comment.
I probably don’t need to remind you that direct clinical evidence, whether it be large-scale or (as you put it) “anecdotal” is the basis on which healthcare is both delivered and developed.
As I understand it cancer is a very personal illness. The individual nature of its progression or not, depends on a multitude of factors, factors relating both to the type of cancer and how advanced it is when first detected, but also factors regarding the general health and constitutional strength of the patient – factors that directly affect how well and for how long the individual can tolerate treatment and of course how aggressively the cancer can be treated.
Unless you are suggesting that we as parents and the medical community as a profession should now be ignoring clinical evidence, then I stand by my question as to whether Andy is responding from an empirical basis or as an observational commentator.
kind regards,
Toni
This is a skeptic blog, and most of its readers are skeptics. I think you’ll find we’re all familiar with the hierarchy of evidence, the danger of inferential errors, the misleading nature of individual anecdotes, the special pleading used by quacks to claim that *their* anecdote is *special* and so on.
Anecdotes are not “clinical evidence”. Case reports are a part of the process of building up clinical evidence. What you are effectively asserting is no different from what homeopaths, acupuncturists, chiropractors and every other kind of charlatan routinely say. It’s an understandable error, but an error nonetheless.
Hi again Guy,
I think I need to apologise – I actually hadn’t realised this was a skeptics blog. I was following a link about Cancer alternative treatments and somehow landed on this page. I didn’t take the time to find out what the parameters were around posting and was merely interested to find out what the basis was for Andy’s comments.
I’m sorry if you think I am wasting everyones’s time and trying to distract people from the purpose of the forum.
If you’ll allow me I would like to respond to one thing that you mention. I actually don’t think I’ve made an error at all in my comments, whilst I’m sympathetic to concerns around quackery, I am also concerned by closed-mindedness and at the risk of paraphrasing an earlier remark I would say that you are dangerously close to be closed minded when you comment:
“What you are effectively asserting is no different from what homeopaths, acupuncturists, chiropractors and every other kind of charlatan routinely say.”
Regardless of how you might feel on a personal level about homeopaths, acupuncturists etc, many of these therapies and therapists are routinely recognised, recommended and prescribed by both doctors and specialists in Oncology as well as in many other areas of medicine.
I would suggest that your comments are dangerously out of align with conventional thinking.
kind regards,
Toni
I’m sorry, Toni, but yet again you’re begging the question. Why should any application of critical thinking to what you deem “conventional thinking” be dangerous? Quackery is rampant, from the meanest con-person, to the most influential, powerful multinational. Critical thinking borne of scepticism is not easy: that’s why it’s not conventional. Neither is it motivated by personal gain – intellectual gain, perhaps, but is that so wrong? Science itself – or the practice of it – is of course not free from quackery. But it probably has more internal checks than most other human endeavours. In many ways the practice of medicine is not especially scientific – never has been. Witness recent critiques of the pharmaceutical industry, where double-blind trials have sometimes been falsified, misreported, distorted or purposely biased. So we have to remain vigilant and invent regulatory bodies to scrutinise in the public interest. I cannot see science as an arbitrary alternative to other modes of thinking: it is the stuff of thinking and logic itself. I suppose complementary and alternative medicine have created a belief system which is very hard to combat, possibly because humans seem hard-wired to seek only confirming evidence of prior beliefs. And the institutionalised mischief of the pharmaceutical giants doesn’t always help. Call me old-fashioned, but I still look to properly conducted, research-based medicine to guide my choices. Don’t always find it, of course. But I would never wittingly line the pockets of cheats, liars, and self-aggrandisers, with their legions of self-delusionists.
Hi there psycole,
I have read your comments several times but can’t understand what point you are trying to make regarding my comments.
Please remember I am only a lay person and I’m not here to try to dispute or discredit anyone. I’m just trying to understand the arguments and where they are coming from (what they are based on) and I simply don’t understand what you are trying to say.
Kind regards,
Toni
Toni,
When you have a thief and a fraudster making money by telling people that they can cure their children by following his advice, there is a problem. Jonathan Chamberlain’s claims are ridiculous too.
People affected by cancers such as neuroblastoma are very vulnerable and parents don’t want to believe that Kevin Wright is just a thief or Jonathan Chamberlain is ‘not all there’. Don’t get me wrong, choice to treat your child in the best way possible is important to me, but people need protection from these sorts of people – both legally and in the media.
No one likes to see cases like Sally Roberts, where the courts have to step in, but this is an old problem. Some people are willing to make money or gain fame out of cancer – even children’s cancer – whether it’s from dishonesty (Kevin Wright) or misguided (Jonathan Chamberlain). You don’t have to be personally affected to see that.
There are those that can’t understand the difference from ‘might help’ and ‘proven to help’, or ‘complementary’ or ‘alternative’. The clinic in Germany you mention might be a valid place to go, if the facts are explained i.e. we are conducting research on you, and it might help. It’s the way the claims are presented regarding some of these ‘treatments’ to the patients that are the problem, not necessarily the treatments themselves.
Taking part in trials is a valid thing to do, but it isn’t just about finding what works – it is also about protecting the participants, because the research is conducted in a regulated way. For example, the regulations should prevent doctors and researchers experimenting on children in a way which puts any interests above that of the child. Additionally the experiment should be explained carefully to the family. Kevin Wright and Jonathan Chamberlain’s advice are outside this regulation. There are exceptions to everything and there are cases where the ‘right’ thing to do isn’t part of this trials process, and I do know that from personal experience, but the principle is a good one. Trials are about protecting the patients as well as learning what really works.
Regards
John Rogers
Hi there John,
Many thanks for your comments.
Just a bit confused – are you psycole? As I requested a clarification of his points regarding my post and you appear to have answered on his behalf.
In answer to the points that you have raised. I’m afraid I don’t know anything about the clinic in Germany or (more specifically) the way in which the clinic advertises/promotes/operates. – I only mentioned it to explain how I found myself on this forum.
Just a side note regarding the clinical trials – I take your point and I’m not interested in attacking big pharma for the way in which they operate or conduct their trials.
My friend got very excited and his hopes were very high when he found out that he could take part in the trial. Unfortunately for him the trial was a horrendous experience – he got every single side effect and the drugs had no impact on his cancer progression. When he spoke to me about this experience recently he felt quite bitter and angry about the whole affair. His anger was mainly because he felt that he had wasted precious time and actually delayed initiation of the treatment that he has since begun in Germany. Whether his current treatment is any easier to tolerate and has better results only time will tell.
I tried to reassure him that the oncologists were only doing the best they could with the information they had at that time. As I mentioned before they are only human and I’m sure they offered him the treatment with the best intentions.
Although I don’t doubt that there are many charlatans out there – in every walk of life – I would imagine that there are also a good many genuine therapists too. Like the oncologists (at the royal marsden), they are all limited by their experience and the relevance of what they practice to the general health of the individuals they treat.
That’s just life. I would caution anyone to go to a therapist who wasn’t personally recommended by someone (who’s opinion they trust) who has direct experience of the therapist.
That’s just common sense. In the case of cancer care, where it might be harder to find a friend who has direct experience of care, then yes I agree it is harder to find firm evidence of successful outcomes, and for the most part improvement in quality of life is perhaps the best that many can hope for.
I can imagine that it is pretty difficult to find RCTs that offer answers and suggestions to these sorts of problems. I think my friend has a Macmillan nurse (or similar) who coordinates his care. I know that if I was in his shoes I would try to find as much information (anecdotal or otherwise) that was relevant to my situation and then use common sense.
Kind regards,
Toni
Hi again Psycole,
If it is any help I think I am in agreement with your sentiments about the value of critical thought. I hope I haven’t given the impression that we (parents) should accept everything we are told at face value, whether from a doctor, a scientist, or an alternative therapist. The people who I feel the most comfortable to trust are those who can acknowledge the limitations of their experience and expertise (in all walks of life), without having to become defensive. We are after all human.
Hence I don’t feel foolish to acknowledge the fact I couldn’t understand what the point was that you were trying to make about my post.
Kind regards,
Toni
No need to apologise, time spent explaining the modus operandi of quacks is never wasted.
Your comment re open mindedness brings up an important point. Science does not really do dogma. People have used science to check for everything from homeopathy to Bigfoot, in that regard science is a process not a conclusion.
Science (I.e. scientists) is broad-minded. Any idea, no matter how crackpot, will meet a receptive scientist eventually. The problem is that the result the. Goes one of a number of ways. A negative result; a negative result due to instrument issues,and so on.
The important point is: quacks refuse to countenance the idea that they are wrong.
That is closed-minded.
Scienc asks: is x true? Quackdown asks: given x, what supports Y! And usually x fails the null hypothesis.
HI Guy,
Thanks for your response.
Very helpful!
I think the point I was making about your response is to do with the terminology that you use(d). You seemed to assert that all ‘alternative’ therapists are Charlatans, which I would disagree with, because that’s different from my personal experience.
As I pointed out in another response I feel most comfortable when I am dealing with/in the company of individuals who recognise their limitations and are not afraid to admit to those limitations, whether they be cranio-sacral therapists or neuroscientists.
I think that there is a (real) danger that if someone makes sweeping statements or judges another’s failures without reservation or fails to acknowledge the basic humanity that makes us all susceptible to error and mistake then they open themselves up to the same judgement – ergo closed mindedness!
Kind regards,
Toni
I think it is entirely fair to say that alternative cancer therapists are indeed charlatans. This is inherent in the definition of alternative: that which either has not been proven, or has been proven not to work. Operating a business delivering exclusively unproven or disproven treatments for cancer is sufficiently unethical that a law was passed banning it in 1939.
Complementary therapies are, and I think always have been, a part of the normal and legitimate treatment of cancer.
If otherwise legitimate complementary therapies are offered in the context of a business that sells exclusively “complementary and alternative” treatments, then the provider is somewhere on the scale between well-meaning-but-deluded and the outright quack.
If an unproven therapy is offered with full informed consent by a treatment centre that also delivers legitimate therapies, as part of a clinical trial, for example, then this is generally fine as long as there is proper ethical oversight.
But we should be really clear: anyone who tells you that coffee enemas, apricot pips, an alkaline diet, juicing, black salve, “miracle mineral”, hyperbaric oxygen or any of the multitude of other quack nostrums, will “cure” your cancer, is indeed a charlatan, and should be run out of town by a mob with pitchforks. Such people are vermin.
Hi Toni,
This comment stood out for me from the rest of the very long discussion thread:
“””
Regardless of how you might feel on a personal level about homeopaths, acupuncturists etc, many of these therapies and therapists are routinely recognised, recommended and prescribed by both doctors and specialists in Oncology as well as in many other areas of medicine.
I would suggest that your comments are dangerously out of align with conventional thinking.
“””
I’m not sure what “conventional thinking” is — evidence-informed thinking seems the relevant quantity to me… but there is plenty of evidence that homeopathy in particular has no effect beyond placebo (at least, when considered over all available studies rather than cherry-picked from e.g. uncontrolled or too-small trials where the statistics can mislead.) As far as I’m aware, while harder to blind in a controlled trial than a “pill” treatment, acupuncture similarly can’t show an effect beyond placebo. Ditto several other prominent alternative therapies.
Of course, if a “new” treatment has not yet been put through controlled trials then it _could_ still be viable, and approaches for which there is a growing body of anecdotal evidence are obvious candidates for such trials… but to be fair to patients the trials have to be done (and not skipped because it’s “so obvious”… campaign groups have advocated such things before, for treatments which didn’t live up to the hype.) Homeopathy and friends are old “therapies”, however, and have comprehensively failed such trials: anyone who argues otherwise is either being wilfully blind or has been badly misinformed. A bit of “prior probability” also needs to be applied — to overcome the lack of any plausible mechanism by which organic agriculture (see my comments above on the real distinctions between organic and conventional — not so much) and water filtering could reverse the course of a serious cancer, the evidence in their favour would have to be very strong. I certainly think it is highly unethical to encourage such a risky course of action without any solid evidence on your side — and for someone to be allowed to form a registered charity with those misguided aims, profit from the sufferers by guiding them toward your business, and then to openly defraud the charity… outrages me (and obviously others).
Competent medical practitioners should be (and usually are, I think) aware of the status of evidence on these therapies, which effectively blocks use of these therapies as primary treatments of serious illness. However, while they can’t _cure_, placebos can arguably be useful for psychological support, and I suspect that it is in this role that they get prescribed in e.g. oncology: a positive attitude, however it has been cultivated, can help. But that use _alongside_ conventional treatment, and as a psychological support, is quite distinct from the “avoid conventional treatment, drink filtered water instead” path advocated by Jonathan & co. This is at best dangerously misguided, despite its emotional appeal to people in desperate situations, and is perhaps far worse than that: amoral exploitation of the vulnerable.
Placebo treatments have similarly been long used by GPs a way to assuage the demands of those with e.g. unspecific chronic aches and pains, which — not at all to dismiss the unpleasant experience of the sufferer — are apparently often (although I don’t know any data on success rates) responsive to placebo remedies. The medical ethics jury (and how that applies to medicine as practised, as well as media/academic debate) seems to be out on whether use of placebos in this form is ever justifiable — and/or whether a bit more compassion, improved communication, and consultation time would serve the same purpose without the dishonesty and theatre. Margaret McCartney’s excellent book, The Patient Paradox, addresses many ways in which the current state of the NHS misses these aspects of care — and this difference between consultation styles in conventional and alternative medicine have been often raised on this blog, by Ben Goldacre’s Bad Science columns/blogs/books, etc.
While the skeptical approach sometimes need to be expressed with more subtlety, challenging dangerously misguided strategies (as defined by the best available clinical evidence) is, I hope, usually motivated by positive compassion and a desire to avoid unnecessary suffering at the hands of misguided or unscrupulous purveyors of “cures” that don’t work. I understand that it sometimes comes across as a bunch of smug, pessimistic intellectuals who would rather that people suffer so they can be proven correct — but very rarely is this the case. I would certainly prefer a world in which magic worked and suffering was unnecessary, but when challenged to prove that they work, the magic cures always fail to deliver (so far, at least — I’m being open-minded!)
Not sure why you’d think that was relevant to the fraudulent claims made by cancer quacks, though I suppose parents of child cancer patients are likely to be more indignant about vile charlatans like Wright.
fraudulent claims made by cancer quacks
Do you need to prove a statement like that? Or is it OK yo presume fraudulence in the face of non-proof. If it hasn’t been proven it is neccessarily fraudulent?
Are you disputing that the claims of cancer quacks such as Stanislaw Burzynski are fraudulent? The definition of a cancer quack is that they make fraudulent claims to treat or core cancer. Examples include those selling Gerson therapy, hyperbaric oxygen, anything involving coffee enemas, alkaline diets and so on.
I was reminded on Twitter today of CRUK’s excellent piece on quack cancer “cures”:
http://www.senseaboutscience.org/blog.php/57/miracle-cures-for-cancer-ask-for-the-evidence
This should be compulsory reading!
D’oh! Linked the blog post but not the page.
http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/complementary-alternative/
This post has not been published for the following reasons:
1) Toni – if I decline to respond to personal questions I hope you would respect that and not dig up an answer and then post that. Not on.
2) At over 1500 words, this is not a comment. The purpose of this comment facility is to comment on my posts – no other.
3) Republishing other people’s blog posts in their entirety is also not on.
Hope you understand.
You’ve read Bad Pharma but you no doubt put all your trust in medical trials. Does that make sense? The thing is most chemo trials actually disprove the value of most chemo regimes for most cancers – yet according to you this is a proven approach to treating cancer. And it is very comfortable to say there is no proof supporting say The Gerson Approach when you simply invalidate anyone who says that it cured their cancer on the grounds that it is ‘anecdotal evidence’. I may not be all there as one of the previous commentators said but I am certainly more there than most of you. The word ‘quack’ is simply a term of abuse. To say alternative approaches are fraudulent without proof is an abuse of science. All you sceptics are good on ‘Let’s imagine…’ and other hypothetical terms – and good on creating logical constructs (yes many people do better than the median) but you cannot assume Burzynski is a quack that has to be proved and to date it hasn’t been.
Jonathan – let me ask you a very simple yes/no question: have you read Bad Pharma?
Yes. It’s quite clear that you can’t trust any research conducted with Big Pharma money
Well that is quite bizarre because the book argues for more trials not less and that the only thing you can trust is complete access to all trial evidence. Are you sure you have read it?
Too true x
Hi Jonathon
I’m not sure why you’re attempting to appeal to negative trial data on chemotherapy, when there are clearly anecdotes out there of people having done quite well following a course of this complex treatment. Is it that anecdotes only trump science when they support your worldview?
So – you’re saying anecdotal evidence is valid?
I’m not sure how you’re inferring that? I am merely pointing out the apparent inconsistencies in your argument. But seeing as you’re asking, I’m not of the view that anecdotal evidence is useless. I think anecdotes are is often valuable in generating hypotheses for scientific testing; I also think they’re useful for gauging the capacity of the human mind for believing certain things (whether they be true or not). But as sole evidence of clinical efficacy – not me.
Jonathan, I think you are confusing the scientific method with commercial practice.
The scientific method is the best method yet devised to separate truth form falsehood. Clinical trials are an application of the scientific method.
Scientists are human, and companies are companies, so the scientific method is often applied poorly – either deliberately or through incompetence. Further application of the scientific method shows this to be the case, and highlights problems such as the hiding of data.
The solution is not to throw up your hands and abandon any aspiration to objectivity, to head down the long winding path of woo until you reach laa laa land, but to apply the scientific method more rigorously and ensure that people are held to higher standards.
I cannot think of any credible justification for abandoning the pursuit of objectivity simply because people have in the past done things badly.
There is no such thing as The Scientific Method. There are many methods by which rational enquiry can go forwards. Observation of individual data and drawing conclusions (not necessarily definitive) is one of them. Epidemiology is one that takes a look at why there might be differences between groups. To take an earlier comment – the fact that some individuals are higher and others lower than any median may be a signal (or may not) that there are key differences.that can be studied further.
Jonathan seems to be statistically blind as opposed to perhaps using stats like a gun, and that seems to be the root of his misunderstanding.
To go back to his light switch analogy he maintains that because you switch a light on three times you can be confident it will work a fourth time which of course is not the case, you can only have a level of confidence. Sooner or later you will switch the light on and it will fail, because either the lamp, the supply or the wiring develops a fault. Everyone reading this must have experienced this event.
Perhaps if you used the spin of a coin as an analogy then it may be a little clearer. If you spin a coin three times and aftre each spin you receive a head would you assume that you are going to receive a head the fourth time? Work it out Jonathan .
Correction, Oh dear I should have said most probably instead of must have
The post hoc fallacy is pretty much hard wired in the human brain. Someone pointed out that it’s probably evolutionary: if you always run from things in the forest that look like they might be a tiger, you will live longer than if you wait until you can see the tiger clearly and be certain it’s not a pattern of shade.
I think this counts as an own goal. Evolution is about survival. Nature favours people who think as I do – and not as you do.
You are quite good at making I evidenced assertions aren’t you? Can you substantiate that claim?
I don’t think nature favours people who jump off cliffs because someone told them it’s okay as long as you flap your arms.
Here’s a hypothetical that is closer to the truth than any others mooted on this site. |Let’s say out of 20 Nb cancer cases 15 die, 3 survive but are very damaged and 2 are healthy. The common factor in the 2 that are healthy is that they have gone organic. Would you, if your own son had NB, say
a) the data is insufficient so I will just go with the majority and just do what the doctors tell me to do
or
b) I may not be convinced that organic is effective but it seems very possible so that’s what I’m going to do.
Do please let me know your answers. No squirming.
Assuming the 18 didn’t ‘go organic’ but ate normal wholesome food… In answer to your question, “No I wouldn’t”. That makes as much sense as any other random fact, such that they might have both worn short socks, or supported Chelsea.
First, I assume that it is only the two healthy children that ‘went organic’. We must consider first that this is just a spurious correlation. There are potentially hundreds, if not thousands, of potential attributes that each patient could share. Age, parents’ jobs, toys used, colour of pyjamas. You name it. Just by chance, the two survivors will share many attributes that the others do not. That is just probability. Also, we must look at plausibility. There is no good reason to believe that ‘going organic’ could have any effect on the course of illness. it is just a marketing term for certain food producers with no coherent scientific rationale. So, no. It would not be a strong indicator of anything significant.
But in any case, you say this is just hypothetical. If there were really any documented evidence, I am sure we would have heard of it by now.
This is a reply to the two Andys below who appear to ask questions then give no facility for replying. Andy Lewis. I have noticed that your contribution consists entirely of not stating anything – instead you make sniping comments from the periphery of the discussion. As for the other Andy – I don’t think we can blame evolution for hurling animals off cliffs (but I am told that lemmings don’t – here is what one person has said (and of course it needs to be checked: “While many people believe that lemmings commit mass suicide when they migrate, this is not the case. Driven by strong biological urges, they will migrate in large groups when population density becomes too great. Lemmings can and do swim and may choose to cross a body of water in search of a new habitat. On occasion, and particularly in the case of the Norway lemmings in Scandinavia, large migrating groups will reach a cliff overlooking the ocean. They will stop until the urge to press on causes them to jump off the cliff and start swimming, sometimes to exhaustion and death. Lemmings are also often pushed into the sea as more and more lemmings arrive at the shore.
The myth of lemming mass suicide is long-standing and has been popularised by a number of factors. In 1955, Carl Barks drew an Uncle Scrooge adventure comic with the title “The Lemming with the Locket”. This comic, which was inspired by a 1954 National Geographic article, showed massive numbers of lemmings jumping over Norwegian cliffs. Even more influential was the 1958 Disney film White Wilderness in which footage was shown that seems to show the mass suicide of lemmings. The film won an Academy Award for Documentary Feature.”
So what was your point again?
I’m not sure at what point your “lemmings” evolved into my “people”, so I’m afraid I have no idea what you are talking about. I simply made the point that if ten people told you they could fly by flapping their arms, evolution would not be kind to you should you choose to follow their advice and jump off a cliff.
Although, it has to be said, you could do it and survive – but that doesn’t mean flapping your arms made a damn of difference to the outcome. Some people fall out of aeroplanes and survive, even without a parachute.
As for providing no reply facility, I’ll leave you to figure out why that might be the case. I’ll give you a hint though – I don’t own the internet, this blog or the social media platform it’s built on.
Jonathan Chamberlain,
Your hypothetical model isn’t closer to the truth. Closer to three quarters of neuroblastoma cases lead to survival rather than your hypothetical 25%. You might be talking about ‘high risk’ neuroblastoma, where the survival is lower – but much better than your 25%.
Nevertheless, In your hypothetical model how many of the other 18 who didn’t survive ‘healthy’ went organic?
Some of the things promoted by yourself and Kevin Wright may one day be proven to be beneficial. Equally, however, they may one day prove detrimental to survival. In my opinion it’s most likely they will show no effect at all.
I think the greatest benefit is likely to be to those making a living out of these ‘alternative’ treatments.
Regards
John Rogers
Sorry John,
Forgot to mention in my last answer to you, that the NHS threatened to take Connah’s family to court, and ask for Connah to be taken away from the family, as the family did not want him to have full body radiation.
Not sure if you have had the chance to read the book about Connah yet, but this and other pieces of very relevant information can be found in the book.
Where do you think Connah’s best interests lie, with someone like Wright or the oncologists?
After having followed Connah’s situation for the past 7 years, and knowing that he has not had traditional cancer treatment since the family started alternative treatments, not with the oncologist, because no oncologist want to take him on, as the family went alternative, and that seems to upset the establishment.
When you say ‘upset’ do you mean despair, and when you say ‘establishment’ do you mean trained medical professionals?
I mean what I wrote, but let me rephrase it into clearer language if that is needed.
Some trained medical professionals in this country are not willing to accept that people question what they are saying, and they despair about this, and therefore they (the doctors) want to go all lengths to make sure that “their will be done”.
If you read my answer to John Rogers earlier today, and also use Connah’s book as a reference, you will hopefully understand what I am talking about.
Thankfully, there are some doctors / cancer specialists who agree that you should have an open mind with regards to alternative treatments.
As Nb Family Member says so clearly, Connah’s interests were clearly better served by Wright than by the oncologists. He is alive and well and healthy and active. So clearly whatever the circumstances that got him to this place were, they were beneficial (or to take your most jaundiced view, not negative) – the interesting thing is that many of those who do similar approaches to Connah also have the same kind of beneficial results. If that doesn’t open your eyes then nothing will. You seem to be closed into your hyper-rationalism and not even the news that evolution itself appears to favour our way of thinking makes you re-evaluate your views.
You keep on about the post hoc ergo hoc fallacy but according to your view neither Messi, Ronaldo or Bale scroed any goals ever because in every case all we saw was a boot connecting with a ball, a ball in the air and a ball in the net. We cannot presume causality.
Really? Bring back Zeno. According to his logic the ball could never arrive in the net. The logic is unassailable – but rather contradicted by life itself.
The fact that you can be rational and ascribe causality to one off events, such a scored goal, does not mean it is rational to ascribe causality to all temporally correlated events. It is rational to do so when there is good grounds to believe causality to have occurred – when there are few or no competing hypotheses and that are good a priori reasons for believing in a cause and effect.
With the children that are alive after following Wright’s treatments – there are obvious and more compelling competing hypotheses (such as natural course of disease and effects of plausble treatments) and there are no good reasons to believe Wright’s gobbledegook is true. Indeed, it is much more plausible to believe Wright’s treatments were a good way of earning him money and nothing else.
I hang a small target on a barn door. I take a machine gun and fire indiscriminately in the direction of the door. I take down the target, now peppered with holes. Do I hold evidence in my hands that I am a great marksman?
Jonathan Chamberlain,
Kevin Wright is a criminal. How many people did he influence with his advice and behaviour to try his alternative treatments? That isn’t clear, but I doubt very much that either he or you would discuss openly how many people your approach hasn’t worked for. Kevin Wright is a liar, but I have to assume you are not. So unless you can answer the following two questions, I again have to say you are incompetent. This is because before you write a book that will surely influence many vulnerable families to question the advice their (or any) doctors (real ones) will give, you should know the answers.
Firstly, why have so many children survived neuroblastoma who were in the same situation as Connah and didn’t ‘go organic’ etc?
Secondly, how many children with neurobastoma have ‘gone organic’?
Comments like ‘…the interesting thing is that many of those who do similar approaches to Connah also have the same kind of beneficial results.’ is not evidence of anything – you have no way of knowing that. Families of these children try all sorts of things that they hear might help. You see what you want to see. Nothing else. It is you are not being open minded, you have to open your mind to reason, not fluff.
Fact: Kevin Wright conducted fraudulent appeals for cancer treatment for children. That money was used to fund his lifestyle and interests. To use the judge’s words regarding two of the appeals …’fraudulent from the outset’
Fact: You have no real idea, or do not want to say, how many children have tried your ‘special diets’ and have seen no benefit (however you are defining benefit).
Fact: Of those who did your diets and did not relapse or progress, you have no idea if those children would have been fine without doing anything.
Fact: Of those who did your diets and did progress or relapse, you have no idea if the diets contributed to progression of the disease.
It’s irresponsible to have no evidence behind your assertions. You don’t even qualify your statements with a ‘maybe’.
regards
John Rogers
NB Family Member,
Again, it’s fantastic Connah is doing well.
Firstly, I think you are missing the point.
There are probably hundreds of children who have been told the same thing – ‘there is nothing more the doctors can do’ – who have then gone on to survive. Connah is the only one who ‘went organic’. These cases are not common but do exist, so why do you think it is the organic food that is the cause here?
Secondly, I have no idea why some doctors apparently are not wanting to see Connah. But, I don’t see the relevance of this to this discussion. Many people, myself included, do have an open mind. By this I mean, alternative treatments might one day be proven to be of benefit, of harm, or most likely no effect at all. However, keeping an open mind, doesn’t mean forgetting about the need for evidence.
When clinical treatments are being considered it is vital that priority is given to those with an evidence base. Whilst Connah certainly has a story to tell, the reader should be reminded that it is a story, not clinical evidence for the alternative treatments.
Regards
John Rogers
My memory must be running away from me, as I forgot to ask you if your daughter Stella was treated for her NB in the UK, or if she did go abroad to get treatments which are currently not available / approved in the UK?
NB family member,
Yes my daughter did go abroad for treatment that wasn’t available in the UK. This illustrates my point completely. It was a treatment that had been proven in a randomised control trial, and published in a major medical journal. Just talking about what my daughter did or Connah did, isn’t really relevant here. One persons experience can tell you very little – especially in a disease like neuroblastoma, something the author of the book seems to have missed.
regards
John Rogers
John,
Before I write anything else, I want to make one thing very clear, and I cannot stress this enough.
After having had the opportunity to meet you and talk to you during different NB related meetings over the years, I have nothing but an utmost respect for what you have done, and are doing to try to further the knowledge of NB and what treatments are / are not available to children in this country.
Now to some comments / questions, which are meant to be general, but might refer to you:
1)
If the treatments Stella had in the US were medically proven, why are they not available in the UK? ( I think I can guess the answer to this). – Money, access to research funding and acceptance of “foreign treatments” in the UK.
– Fortunately, there are initiatives to try to do something about the above, ie the NCCA, J-A-C-K and Solving Kids Cancer Collaboration as an example.
Also, the opposition from certain doctors in the NHS, (who I am not going to name, but I am sure you know who I am thinking of) who do not want their “territories disturbed”.
2)
If the treatments Stella was having had no positive effect or did not seem to be working, would you be able to, hand-on-heart, say that you would not be willing to try anything to help your child? I am sure this was the dilemma for Connah’s family. Listen to the doctors who seemed to have given up, or try something else, which in Connah’s case seems to have worked well, and continues to baffle doctors, including his own GP in North Wales and also Dr. Mark Gaze at UCLH.
3)
Survival rate: a number of posts in this blog have referred to high survival rates from traditional treatment regimes, and made it seem like alternative treatments are not necessary or useful. However, some essential information seems to have been left out, which can have influenced the seemingly high number of survivors:
-Age of child at the time of diagnosis (it is a well known fact that the earlier “you catch something, the better chance you have to cure it”.) The survival rate seems to take a dive the older the child is at time of diagnosis. If the children referred to had an early diagnosis, their survival rate would be higher, and figures would look very good.
– Type of NB, where is the main tumour(s) located, and if they can be operated and removed “safely”.
4)
In your response to Jonathan Chamberlain, you are referring to, and rightly so, that Kevin Wright is a convicted criminal. If you have read my posts and answers, you will see that I agree with you, as long as you remember to mention that his conviction was for fraud and theft, and nothing else.
You are asking for proof of numbers of how many children have benefited from alternatives treatments. Why not turn that question round to you: can you produce proof that alternative. Treatments are not working?
Nb family member,
again 1) isn’t really relevant to this discussion. Whether a treatment is proven or not is the question, and as you know this issue was tested in the courts. Nothing discussed so far regarding Kevin Wright or Jonathan Chamberlain is remotely similar to a treatment proven in a randomised control trial.
As regards 2) of course I would support ‘trying something’ such as joining a trial etc. or something else. But two doctors not understanding why something is happening is not the same as discovering a cure for a disease! Neuroblastoma has many cases where the disease did not progress as expected.
3) that is exactly right. Alternative treatments have NOT been shown to be effective or necessary. Research has identified and continues to identify prognostic factors, this helps understanding of the disease and decision making.
4) Jonathan Chamberlain has failed to respond to any of my comments – I’m not surprised, as it shows he hasn’t done his homework.
Kevin Wright, is in my opinion, guilty of more than fraud and theft – he has misled many families in an extremely vulnerable position. Using money collected for children’s treatment to buy a pub and premium bonds are not actions of someone whom I would trust with anything.
People who have got hooked into Kevin Wrights ideas, will (if they or their children are still healthy) believe they have done the right thing and may even believe their continued health is directly due to they ‘lifestyle changes’.
I say good luck to them, and I hope their good health continues, but I am concerned on at least two points.
Firstly, is the lifestyle change detrimental to health in other ways (such as from long term supplement use)?
Secondly, can they ever stop? Fear will make sure they continue to follow the dietary and supplement use suggested because the risk of stopping and the cancer coming back is too great.
Ultimately, it’s just the reporting of these ‘alternative treatments’ that is the main problem.
Parents and family members (and I applaud their efforts) will do anything for their children and I just don’t think it’s right that incorrect or uninformed statements are made regarding these cases. Kevin Wright aside, Jonathan Chamberlain’s comments need to be challenged.
best wishes
John Rogers
John,
You are writing in your answer to me that whether a treatment is proven or not is the question, and as far as I can understand from your answer, it does not matter where the treatment is available, as long as it is available. If so, that opens up at least this question: Why do Nb families in the UK have to raise hundreds of thousands of pounds, something I presume you had to do yourself as well, to travel abroad to centres like MSK, Vermont, Philadelphia, Germany etc for treatment? If the treatment is proven to work in the US or Germany, it surely should work in the UK as well, and should therefor be available on the NHS. Or is it because the treatments that so many families are relying on, which can be found abroad, have not been approved /proven in the UK (please read accepted by DRS. PB and AM).
N.b. family member,
Sorry for the late reply.
In response to your final post below, no it is the other way round. I think the starting point should be: what is the proof of the treatment? Availability is a different question. There are lots reasons why a proven treatment may not be available in one country or another, and obviously I think it is wrong if a proven treatment is not available. Additionally I think there should be more research and trials available for families to consider. But this is again a different argument as to whether a particular treatment has proof behind it or not.
The starting point should be: what is the proof? not, is it available?
Best wishes
John Rogers
“You have no idea if the diet contributed to the disease”.
John Rogers you do realise that by ‘the diet’ you mean fresh fruit and vegetables, that haven’t been sprayed by poison, and whole foods that are cooked in a healthy way.
Are we not applying any common sense to these statements?
When you say “haven’t been sprayed by poison”, you display your belief in the naturalistic fallacy.
In practice organic farmers are allowed to use medicines and pesticides to control outbreaks, and the evidence for harmful effect from residues on properly prepared fruit and vegetables is very thin.
The standard Western diet is primarily made up of industrially produced produce. The Western life expectancy is rising rapidly, even taking into account the effects of overindulgence. The idea that the standard Western diet is killing people is plainly wrong: the main killer is simply eating too much, and there’s nothing to show that the method of production makes any difference there.
There is decent evidence that industrially produced produce is actually more nutritious.
But whatever: if you want to live the life of a paleolithic then feel free. They were mainly dead by 30.
Sam,
you have misquoted me, what I said was:
“Of those who did your diets and did progress or relapse, you have no idea if the diets contributed to progression of the disease.”
Additionally, what is suggested by Jonathan Chamberlain and Kevin Wright is I imagine more than just eating healthily. There is a whole host of ‘lifestyle’ changes and I suspect supplements….
As far as common sense?
I am concerned at the extremely vulnerable people who will be influenced by these ideas. Cooking food from scratch, where’s the harm? you may think.
Families with children in treatment for neuroblastoma are under enormous pressure as it is, they will struggle to find time to do this, They will be spending valuable time on something that may be ‘good’ for them, but won’t cure neuroblastoma. This exploration of ‘alternative’ treatment may start with an unproven belief that an organic diet can cure neuroblastoma, but it can lead to more. It can lead to using supplements (to the diet) of things that we can now only guess how they might affect treatment or health in the future. Beyond this people end up spending large sums of money on very questionable things such as Rife Machines.
There are people who will exploit anyone, including families and children with cancer, and I think it’s right they should be called out.
best wishes
John Rogers
Ah, thanks for answering my question
Hi, I write from Italy, and i am a neuroblastoma parents. I knew Kevin Wright two years ago soon after diagnosis of my son. I’m sorry i can’t use english like i would do. Sorry for my errors, I just want to add my opinions about all this discussion. First: Mr. Andrew Lewis consider quack or unproven what in reality isn’t. I’ll do quick, just take a look on Pubmed: Avemar isn’t unproven, totally the opposed. Medicinal mushroom in cancer theraphy isn’t unproven; AHCC or Biobran mgn-3 isn’t unproven; a diet rich in flavonoid and antioxidants, with no pesticid, hormones, antibiotics or other stuff like that isn’t unproven, neither it is need to be proven i would say: if you eat junk you will be junk (hyppocrates); an hypocaloric diet during cancer therapy isn’t unproven; artemisinin and his derivatives isn’t unproven in cancer therapy; infrared sauna and hyperthermia therapy isn’t unproven; curcumin isn’t unproven; Modified citrus pectin isn’t unproven; Honokiol, Boswellia, Ayurvedic medicine isn’t unproven. Well mr Lewis not everything you don’t know isn’t unproven or just quack because you don’t know. This state of mind remember me the Gailleo’s inquisitors. Maybe you know Galileo Galilei.
Another thing: you clearly have never seen an oncological section for child and what they offer to sick child: coke; fried chicken; snacks; and other junk food like this. Last thing: doctors gave my son 15% of survival: he was high risk stage IV with skeletal and abdominal metastasis, with a tumor mass about 18*12 cm. I have seen many other child died after round and round of chemo and radio therapy with diagnosis much better than that of my son. I’m sure you call this “anecdotal”, and so unproven. Well i call this reality, my reality for sure, in which thanks to integrative therapy and diet and chemo my son recover soon with no evidence of disease. Can i be sure of this? no i can’t. Would i repeat everything? yes i do, because i have the sureness that integrative therapy works so well in cancer patients. Here in Florence there is our integrative oncologist, who is a doctor, is graduate, he follow many patients and i know many of them who do much better than “standard” patients. Is this anedoctal? Yes it is, but again, reality is anecdotal.
Hi Sandro, thanks for the input. I’m not at all an expert but I tried briefly looking on PubMed and the Cochrane summaries to find what’s available for some of the therapies that you mentioned. I’ve picked a few more or less at random:
* modified citrus pectin has shown some benefit in melanoma and colon cancer but there have been no controlled human studies. The American Cancer Society has a good page on this (http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/dietandnutrition/modified-citrus-pectin), which concludes “Relying on this type of treatment alone and avoiding or delaying conventional medical care for cancer may have serious health consequences.” So not proven, neither disproven, and no apparent evidence or suggested use at all for child neuroblastoma: what is the relevance?
* Ayurvedic medicine: it’s popular, so I thought I’d take a look. I didn’t find anything except for more-or-less null results on schizophrenia in the Cochrane database, but the ACS again has a useful summary page (http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/mindbodyandspirit/ayurveda). As reported in the schizophrenia studies, there can be some unpleasant vomiting/nausea side effects from Ayurvedic drugs, and “there is no convincing clinical evidence so far to suggest that traditional Ayurvedic treatments can have a substantial impact on the growth and spread of cancer.” Perhaps as a nod to Ayurveda enthusiasts they point out that active substances from herbs used in Ayurvedic medicine are used in purified form in conventional medical cancer treatment… which I think is a positive indication of open-mindedness in medical research and certainly not a conspiracy or Gallilean persecution!
* Avemar: I’d not heard of this before. I didn’t find anything on the Cochrane, ACS or Cancer Research UK web pages about it, which is odd because there is quite a bit on PubMed and clearly a fairly substantial industry producing and promoting it. Is it discouraged/ignored by conventional oncology? The articles on PubMed suggest that it is used, but again I’m no expert. But the fact that there *is* evidence, that trials have been run and documented, and that several of the papers are on establishing a plausible molecular basis for its action just shows how different this is from the filtered water + organic food therapy. I also notice that these papers study and the Avemar website advertises its use in *combination* with conventional chemotherapy/radiotherapy, not as a replacement for them.
* Your last comment does seem a bit less substantiated, however: “a diet rich in flavonoid and antioxidants, with no pesticid, hormones, antibiotics or other stuff like that isn’t unproven, neither it is need to be proven”. That’s a lot of things wrapped together… I don’t know anything about flavenoids, but the evidence for antioxidants is decidedly mixed (cf. the Linus Pauling citric acid affair), and pesticide residues on food are regulated to be at a level well below that which could be biologically active. Note that organic food production doesn’t use “no pesticides”, it just uses non-synthetic pesticides… which are just as biologically problematic. There is an EU-wide ban on use of hormones in beef or milk production, as far as I could find out, although there’s no evidence for health problems induced by them.
Anyway, what is the relevance of this? The issue being taken by Andy Lewis (and others here in the comments) is with Kevin Wright and Jonathan Chamberlain promoting therapies for which there is no evidence (i.e. no PubMed articles) at all, and taking money from patients, parents, and the public to do so. That is very different, as far as I can tell, from the methods you referenced… neither are those typically pushing patients to abandon their conventional oncology regime.
I’m of course very happy for you that your son is doing well! I’m also surprised/shocked/sad that you have had a bad experience with junk food on an oncology ward… but while UK hospitals also house branches of Burger King (to maximise income for the hospital trusts) there is also pretty clear and unequivocal medical advice that a balanced diet is important for health, particularly when in an active treatment regime. This contradiction is something of an NHS scandal, or at least should be. Preferring “proper” food to junk is not at all in contradiction to conventional cancer treatment, but neither is it a replacement for it.
Best wishes,
Andy
PS. Apologies if picked the “wrong” methods to look up online… are there others from your list that are more relevant to the Wright case / arguments being made here?
Hi Sandro,
you are confusing what is proven, with what might work, with what doesn’t.
Lots of things ‘might’ work, some might even to have been shown to have some evidence on some cancers in some circumstances, but none of this is proven in neuroblastoma. I’m afraid most of the things you mention are probably quackery or at least unproven.
I hope your ‘integrated oncologist’ knows the difference, because Jonathan Chamberlain doesn’t.
good luck and best wishes
John Rogers
@ Andy: you can not expect to find double blind placebo trial with thousand of patients with “natural compounds” and i think you should know why. If you don’t i ‘ll tell you soon: it cost a bunch of dollars and the only subjects who can run such a big “proven” trials are pharma industries. In Italy we call this “a dog chasing its tail”.
MCP has antimetastatic potential shows in in vitro and in vivo research via inhibition of galectin-3 (proven mechanism). It has no side effects at all and there is a bunch of unproven “anecdote” with thousand of patients who are alive and kicking despite the “you gonna die soon or sooner” advice by the fair medical corporation.
Ayurvedic medicin: Boswellia serrata can safely target LOX-5 (proven mechanism), an enzyme involved in cancer spread and invasivness, and there is substancial finds that it may be useful in cancer patients: this is the last article published on pubmed: http://www.ncbi.nlm.nih.gov/pubmed/21287538; again i’m not sayng you have to quit chemo to adopt Ayurvedic medicine, i’m just saying Ayurvedic medicine (and many other natural compounds) can make a difference between life and death if used well along with chemo and radiotherapy. Curcumin has a bunch of similar small trial findings, it can safely target many steps involved in cancer spread and metastasis (COX-2, NF-Kb inhibition and others).
Also, i’d like to underline a curios paradox of “modern” medicinal industries.
If an herb is being used by something like 3000 years by the human race (like ayurvedic medicines or medicinal mushrooms for examples) for medical purposes, I think is up to you (i.e. medical corporation, pharma industries) to demonstrate that these things are not useful or even dangerous or “quack” and not the contrary. I have the feelings that a compound human takes 3000 years ago is safe enough (and probably effective, otherwise human had stopped before) than a drug invented post world war II (like many of chemo drugs). So i would very happy if pharma industries would open big double blind placebo trial with many of these natural compounds, but maybe they never do, because there are no big money in it. It’s just an industrial point of view. An industrial strategy.
To remain in topic. Kevin Wright has never suggested me to stop chemo or conventional therapies, quite the contrary. He told me to use integrative therapies to increase chemo anticancer effects and minimize side effects. That is what in reality happened (anecdote): chemo worked so well for my son and the side effects were minimals.
Thaks for your wishes and good luck to you too.
@John: Please don’t be afraid, could you tell me what quackery things i have mentioned? Also, a recent in vitro findings about Artemisinin derivatives on a panel of chemo resistant neuroblastoma cells: http://www.ncbi.nlm.nih.gov/pubmed/19698702; according to this paper Artemisinin derivatives works like Etoposide against neuroblastoma cells (i.e. with similar efficay and similar cytotoxic effect). But unlike Etoposide it has no side effects like neutropenia, secondary cancers, nausea, weight loss, hair loss, diarreha, acute myeloid leukemia, mouth sores and maybe it costs to little for medical industries standard. You can be sure our “integrated oncologist” know the difference, like i do, thanks anyway for your concern.
Sandro,
Sorry for the late reply. Most trials of drugs or treatments for neuroblastoma unfortunately end in failure. Any drug or treatment used in a phase 1 clinical trial would certainly have shown some rationale based on results from test-tube trials. Finding a result on the web of activity against neuroblastoma cells is interesting, but please understand that isn’t proof that a drug or treatment that the paper refers to cures neuroblastoma. You should check that your integrated oncologist can explain the difference between in vitro trials (in a test tube) and randomised controlled trials in children.
Unfortunately cancer quacks mix in vitro trial results (and the drug supplement being tested) into their recommendations. The law of averages says that if I choose 100 drugs that show promise in vitro, hopefully some will work in children (and one day will be proved to work). You shouldn’t ignore the very real possibility that some of the drugs may be detrimental, or may interfere with the activity of the drugs you are being given as part of your standard treatment. This is one of the reasons that even a cautious quack would suggest you discuss what you are taking with your oncologist.
Here is an interesting article that talks about some of these issues it’s worth a read,
http://www.bbc.co.uk/news/magazine-24563590
I’m not trying be critical of you or anyone else who tried their best for their children or family members, and I understand is English is not your first language, but it is the words that are used regarding these supplements and diets that are the problem. Adding a simple ‘might help’ in front of some of these claims is all that is required. Characters like Jonathan Chamberlain talking of cures is irresponsible.
Best wishes
John Rogers
John,
i’m sorry if i can’t explain so well; as you say english is not my first language; and is not even the second… you’re right anyway, is better to say “might help” in these cases. Chemo and surgery and radiation and monoclonal antibodies “might help” in some cases too.
Sure i know the difference between in vitro test and double-blind placebo trial, thanks again for your concern. But regarding the example about artemisin my question is: who would invest a billion dollar in a double-blind placebo trial to find out if artemisinin derivatives works better than etoposide in human (like the test tube suggest)? My answer is no one, because no company have interest to invest so many dollars in a compound that has no profit (or very little profit). I understand this, as i said it’s just an industrial strategy. I find this shameful but i understand. If you have another answer at my question please let me know when you have time.
I repeat again: chemo “might works” for cancer and i would not suggest anyone to quit chemo, instead i would suggest anyone with cancer to integrate specifical nutritional supplement and specifical herbs supplement that “might works”, like chemo or radiation, for cancer patients.
Also, you call researchers, doctors and many other serious person involved in cancer research other than chemo “cancer quacks”, but this is not about “snake oil”, “positive energy” or whatever. This is about specific molecules with specific known and proven targets that might help every cancer sufferers. Reading this article for example http://www.nature.com/nature/journal/v483/n7391/full/483531a.html
can suggest you that maybe cancer quacks are exactly where you don’t expect to find them.
Best wishes
Sandro
Sandro,
I agree, the supplement/drug you talk about ‘might help’ under some circumstances,
but contrary to what you have written, chemotherapy, surgery, radiation and antibodies have been proven to help survival in frontline treatment of neuroblastoma.
This is a critical difference, which you say you understand.
If you or some researchers can find another drug that improves survival without side effects of the current proven ones, that’s great. But proving this takes a great deal of work.
If someone then says it is a cure, without proof, many people would call that person a ‘cancer quack’.
I also, dont really see the point you are trying to make with the Nature comment article. It makes the point that preclinical data can be very unreliable – precisely the type of data that you are basing your evidence on….
best wishes
John Rogers
John,
chemotherapy, surgery and radiation have been proven to help survival because they have been the only agents tested from the late 30’s, after scientists discover that mustard gas from WWI suppress bone marrow and rapid cell division proliferation, that is their only rationale…
“Conventional” drugs are the only front line therapies tested for cancer on human or i miss something? Do you know any trial who put artemisinin vs. etoposide, or Avemar vs. Tamoxifen or retinoic acid vs. Doxurubicin or anything vs. chemo or radiation? The studies you can find on natural compounds are not involved in the Nature’s article i linked. If you take the time to read the article is about “conventional” drug company and “conventional” research and “conventional” drug development, that is flawed in many cases and under many aspects (ethical and effectivness and conflict of interest in many cases).
I can’t find new drug or strategy for cancer patients, sure cancer industry has no interest in find one. In fact their rationale proceed from the 30’s and the mustard gas… and they still have not changed it, and still it does not work in many cases, also if in some cases it “might works”.
Where i say that some of these researchers or doctors i mentioned talk about “cure”? I never tell this and they never use the word “cure”.
Best wishes
Sandro
A late/last comment on the “why did the punched guy fall down?” analogy. This was clearly not meant to map directly on to the causality of cancer cures, but rather just as an example of how you can never be certain unless you make well controlled studies to disambiguate possible causes. But unfortunately it got sidelined into the quite reasonable argument from Jonathan that if you punch someone and they fall down then you know why it happened.
But why is that a reasonable interpretation? Well, because the rate of people spontaneously falling down is pretty damn low. And that’s falling down at *any* time: the likelihood of someone falling down spontaneously at exactly the time that my fist encounters their face is vanishingly small. Common sense is indeed reasonably in this caricature case… because we have a natural feeling for the prior probability of spontaneously falling down.
The thing is, this *is* quite a good metaphor for the organic+filtered cancer treatment -> cure case. The prior rates of spontaneous remission or late action of chemo are finite, while the correct prior to assign to miracles being performed by eating organic food or filtering water are very small… unless you were previously on a regime of pure fast food and fizzy drinks. (And you can fix that without “going organic”.)
So, out of the possibilities of known spontaneous remission at a significant rate, or miraculous and biologically unlikely effects of a particular nutritional regime, which is more likely? It seems to me that by his own common sense argument Jonathan is the one pushing for the “punched guy had a spontaneous heart attack” interpretation. I also get the feeling that no amount of logic will prevail against such a true believer, but just had to point this out 😉
A guy collecting money for KICT was doing the rounds of cafes in central London recently – without asking the establishments’ permission first. I got talking to him. Turns out he’s got a lot of criminal convictions and seemed grateful that KICT were giving him a chance to volunteer with them. That rang alarm bells, because it seemed to me that they were deliberately using someone whose ability to tell right from wrong was suspect. I suggested he find a more worthwhile cause to volunteer for, pointed out your article, and he made it clear he didn’t care about whether it was true or not.
The leaflet he handed out was laughable, transparent nonsense about cancer and organic food. That’s what made me suspicious in the first place. Surprisingly, I saw plenty of people giving him money – people really are taken in by this.
As someone who works in the voluntary sector, with organisations that provide quality health information, I found it all rather depressing.
Perhaps the Charities Commission would be interested in your concerns.
At least one person that I know of who worked as a street collector for Kevin Wrights charity (Yes, worked, they aren’t volunteers.) was a convicted rapist.
What’s that got to do with it? People convicted of crimes don’t just evaporate after they’ve “paid thei debt to society”!
Absolutely Rita, and they need to be given opportunities. But a children’s charity would normally be doubly careful who they employ and the worker would need to undertake a police check. That’s standard practice. Some convictions could no doubt be overlooked but rape? And would a reputable charity entrust a collecting tin to someone with theft convictions? Would you want a fraudster running it? After my chat with their worker I had the distinct feeling that he was employed precisely because he was OK with morally dubious activities.
I think your the one talking shit, you haven’t got a clue what went on and what work was done by Mr Wright and the team.
You carry on listening to the doctors and people who haven’t got your best health in mind just what they have read from books which are paid for by the FDA.
Fools you are!
Please do clear this up for me: At what point in their education are all the doctors, nurses and medical scientists in every nation on earth taken to the indoctrination centre and subverted to not caring about the thing that has dominated their motivation thus far?
What a disgusting article, to read that such ‘quackery’ is dangerous. Let me tell you that said ‘quackery’ is the only reason that my son is still here today.
Chemo and radiotherapy causes cancer, they tell you that just before they fry you with it. The dieticians on the childrens oncology wards are feeding kids with 100% glucose supplements yet the radiologists will tell you that glucose feeds cancer quicker than anything else.
WHAT THE HELL IS GOING ON IN THIS WORLD?
Please don’t be misled to believe that the big pharmaceutical companies have your best interests at heart, they want customers, not cures.
The Dr’s really do their best with what they have but unfortunately, the Dr’s aren’t in charge.
If any one of you who don’t believe in such ‘quackery’ is unfortunate enough to board the cancer money train then I really do wish you luck because you’re going to need it.
The Cancer industry is all about getting the most amount of money out of you before it eventually kills you, and it will.
I’m forever thankful for the help and guidance I have received from many sources and more so, I am eternally thankful that I had the good sense to take matters in to my own hands with my son before it was too late.
Oh and by the way – Bobby Wright should be dead but because of his fathers quick response, he’s still here many many years later with no side effects. I have been to Kevins house, he does NOT advocate or pass on information about anything that A – he does not use himself or for Bobby and B – That he does not source from the best suppliers.
Regardless of his criminal convictions, Kevin Wright knows more about Cancer and the prevention of it that 99% of the Dr’s in this country.
Sorry – me again!
Please do more research into Apricot kernals (vitamin B17) they are NOT toxic!
My son has been on them for a while now and the Dr’s even sent some to the lab to be tested to make sure that they didn’t conflict the chemotherapy that they were pumping into him!
Funny that, they couldn’t give me any evidence as to why I shouldn’t give him Apricot kernals but they really did go to a large amount of effort to try and prove me wrong. Shame that no one cares that much about the horrendous side effects of chemo – like cancer!
I’ve given far too much of my energy to this, you need to be very careful what you’re saying because YOU are the one who will cause children to die with your misinformation!
There is no such thing as “vitamin B17”, and the evidence of cyanide toxicity from use of amygdalin is compelling (it is also entirely expected, since the presence of cyanide in sources such as apricot kernels is well known).
Laetrile / amygdalin / vitamin B17 is reckoned to be the most lucrative health fraud in American medical history. Why do you think laetrile quacks have your best interests at heart, especially when they base their entire business on rejecting the scientific evidence of harm and lack of effect?
I don’t believe anyone other than myself has my best interests at heart. I have seen for myself the evidence I need to see to know that what I have done was right.
Why couldn’t the lab give me all that info then? Why did they tell me that they were totally safe to give to a child then?
I have spent years researching and never once have I gone to see a homeopath – I have figured it out for myself, tried things and seen for myself the results.
Put it this way, I’m glad that I took my son from the Dr’s and the hospitals when I did.
I’ve done my time, 2 years of cooked breakfasts, lots of reading, diplomas in advanced herbalism, advanced holistic nutrition, anatomy and physiology, homeopathy – for what it’s worth, C.B.T. hypnotherapy, (look into my eyes, not around the eyes) stress management, not that lying in until 8.30, going to the gym, eating 6 bits of fruit while watching Frasier every day is stressful, flower remedies, all botters love flowers, business accounting as I was convicted partly because I wouldn’t pay an accountant, en suite single room, to call them cells is so 20th century, ain’t so bad. While away I improved my mind, did more exercise than in the previous 20 years and didn’t take any shit off anyone. If you really need to hate on someone try one of my room mates. http://www.dailymail.co.uk/news/article-2322658/Jamie-Starbuck-murdered-new-bride-Debbie-Starbuck-embarked-world-trip-65k-savings.html He really does need shooting. I never bought myself any Bentley’s or Ferrari’s, we didn’t even go on a world cruise. Did any kids die as a result of my actions? no. Some might even have tolerated their treatment better than expected and go on to live full healthy lives. But hey do I give a shit? no prizes for guessing the answer to that one.
I don’t even know where to start with this. Whether to address how brainwashed you all have been, or the sick way you’re all willing to jump on the bandwagon ruthlessly defending your propoganda science religion. You dumbed down people REALLY believe that healthy diet and lifestyle is “quakery”?! That every so called “expert” has been “properly trained and therefore the authority on what is right”!! Do you NOT realize that all of your so called experts wern’t trained in your so called science religion at all but instead are propogandized in their education and TOLD what is truth-in other words Dr don’t EVER learn how to cure or treat diseases but instead are bombarded with which drug to give for which symptoms which in turn create more symptoms which means more scripts which means more kickbacks to the doc! You all are SO FREAKIN DUMBED DOWN and are in fact the TRUE QUACKS! Cant you read between thw lines at ALL? That this article for one provided zero evidence of these charities hurting a single child, but guess what does hurt them GIVING THEIR POOR HEALTH BODY’S POISON THAT THEN KILL THEM! The ones that survive are the ones that don’t take the poison!! I You people REALLY need to try thinking for yourselves for a change instead of being told what to believe. Though the way you all attack-ANYONE who thinks outside the death driven propogandized bullshit you people call healthcare and actually even have something that works for their precious child I could see how you might be afraid. Wake up! That was pre hitler Germany to a T and you idiots couldnt see the truth if your t.v. opened up and smacked you accross the face with it! Wake tfu… if you don’t take their poison they will kick down your door and take your kid as the above article stated and if that doesnt wake you up… nothing ever will. God help us!
Jordan – you really should have stopped after your first sentence and retained some credibility. You appear to be defending a man who was convicted of theft and fraud against parents of children with cancer.
Let’s start with the claim that you think I believe “that healthy diet and lifestyle is “quakery”. Where do I say that? Obvious nonsense. I do believe that making unevidenced claims for nutritional approaches to treating cancer, including the selling of supplement pills, is indeed quackery. And such claims do harm people.
As for your diatribe against real medicine, I suggest you explain why children with leukaemia are now almost routinely curable compared with just a few decades ago. This is not down to vitamin pills, but science. Even this morning, further breakthoughs are announced.
http://www.bbc.co.uk/news/health-34739304
What is your explanation for this vast improvement in outcomes of chidlren with cancer?
Nine out of ten cases of childhood Hodgkin lymphoma are provably cured with chemotherapy. Zero percent are provably cured by diet or lifestyle changes.
And that about wraps it up for your silly rant.
Andy’s dignified responses to Jordan’s silly, insulting and frankly downright stupid outbursts say it all. Try checking your facts and thinking before opening your mouth, Jordan, if you can recognise such processes.
KW quickly back in business! http://qualifiednaturopath.com/
Believe it or not, but when my husband was diagnosed with cancer a few years ago I knew absolutely NOTHING about the healing regime except of course I knew people had chemo therapy though I didn’t even realise what this entailed. I did a lot of research and found that ONE of the biggest contributors to this awful disease was food, especially SUGAR (the refined kind); cancer cells LOVE sugar – how do I know this? I accompanied my husband to all his hospital appointments and on one of these visits he was asked to consume what looked like a jugful of ribena. I asked the nurse what the drink was and what it was for. She hurriedly replied that it was a sugary drink – she went on to say that the cancer cells love sugar and it makes reading the scan much easier. She went on her way and I stood transfixed to the spot. I couldn’t understand that the link between cancer and sugar had somehow been missed by the medical fraternity; why weren’t they advising patients to stay clear of refined sugar? That happened at the beginning of his treatment – my husband went down the chemo and radio therapy way – so I did more research. Food, that is to say, good wholesome food – the kind that hasn’t been impregnated with all kinds of toxins – is a must as is good clean water. After every chemo session and when we arrived back home I would give my husband a reiki treatment, which is an ancient healing system – I did this to counteract the poisons of the chemo.
Kevin Wright was faced with losing his son to this awful disease and was determined to do anything he could to help him. He researched and went to various parts of the world and found pioneering ways to help his son. He wrote a book outlining the healing regime in great detail which he made freely available as a download. His son whose prognosis was not good has been clear of cancer for many years.
Yes, Kevin Wright made a dreadful mistake stealing from the charity he set up – there’s absolutely no two ways about it …. he did wrong, especially regarding such an awful disease as cancer. However, it is sad that his legacy regarding the successful healing regime used on his son is being so devalued here.
Maybe most of you here prefer taking chemical compounds sold to us by the pharmaceuticals, but I would also urge you to do a little more research into the health benefits of good nutritious food with an open mind.
lov8 said:
Why should I believe it?
Indeed research is important. The issue is what authorities do you want to inform that research. It does look as if you invest your beliefs in the dodgiest of authorities. Convicted fraudsters who tout nonsense treatments for money tend not to be the best medical authorities. Your belief that Reiki is ancient (invented in 1922) suggests that you do not dig too deep.
If some of you lot want to eat GMO, pesticide/insectiside foods and drink toxic water, douse yourself with chemicals and the like then go ahead just do it and leave the rest of us alone that dont want to. We evolved well on natural foods and a clean environment if you think chemical laden, GMO, false foods etc are good for you then that’s your choice. Leave me to make my own mind up. I know I would trust Nature every time even if it is a constant battle to find things that are undamaged by the so called intelligenc parasitic toxic $£$£ loving human, who will destroy himself and the planet in the end. How many species have we managed to eradicate so far? Yes, really intelligent!
It is impressive that you can write so few words and yet be so wrong in so many ways and on so many levels. Congratulations.
And I am pretty sure, given that you go down a well trodden path of error, that facts and reason are not going to change your mind.
But just out of curiosity, how do explain the fact that life expectancy has doubled in just a few generations?