Balancing act

What would you do if someone claimed that, because of “geopathic stress”, moving your bed could be the key to avoiding cancer? Well, if you’re the Irish Independent, you give that someone the most prominent picture and article space in a section about cancer prevention and treatment, with the bold headline “The truth about avoiding cancer”.

The man in the picture holding the magical pieces of wire is Brendan Murphy, and the article is little more than an advertising piece for his company, Positive Energy. Though the piece starts promisingly by pointing out that geopathic stress is “an area that is still open to debate”, sadly, it fails to deliver that debate. Instead, the reader is treated to a number of claims with a dearth of supporting evidence.

  • By ‘dousing’ (an ancient practice of using two wires to find underground waterways) Brendan can identify where water runs under a house and has found a strong correlation between that and illness.
  • If you’re constantly waking tired and unrefreshed it could be a sign that you’re sleeping over geopathic stress.
  • There’s a growing interest in how geopathic stress or ‘sick building syndrome’ affects health, with planners in several countries now considering geopathic stress lines when building houses. 
  • On the basis that electromagnetic waves affect the body’s ability to restore itself during sleep, Brendan advises also keeping mobile phones and electricity boxes an arm’s length from the bed – as well as keeping WiFI switched off at night.

The piece neither provides, nor suggests where you might find evidence to support the claims about Murphy’s dousing abilities (or anybody’s ability to accurately douse), or why electricity boxes and wifi might prevent your body from “restoring itself”, and if you found yourself wondering what planners are interested in geopathic stress lines, and how they could possible hope to avoid them all if they are as prevalent as claimed, you are not alone. A quick search through any academic database will cure what ails you – geopathic stress turning up only in low quality journals and those that focus on complementary and alternative therapies. Whatever strong correlations Murphy claims to have found between illnesses and these imaginary stress lines, it certainly hasn’t been documented in any research papers.

Continuing to largely ignore the seemingly fictional nature of the piece, the author concludes that there has been “little investigation into the area, but if something as small as changing where you sleep, or moving your phone, might impact on your health it could be worth thinking about.” A statement of equal legitimacy might be “there has been little investigation into the area of alien-induced head colds, but if something as small as wearing these protective alien UFO blocking nose plugs might impact on your health, it could be worth thinking about”.

Further down the page, nestled between largely sensible articles from an Irish Cancer Society representative and a dietician, Dr. Aileen O’Kane, now an Ayurvedic practitioner tells us that “if the digestive system is overtaxed the immune system is compromised and can’t gobble up the cancer cells that the body is always producing, the way it normally would”, and in a nod to the thoroughly debunked “alkaline diet” craze, that “Many people who have cancer have excess acid in the body.” The conclusion, highlighted for you in a section of its own, is to “keep acidic foods to a minimum”. O’Kane believes that any illness, including cancer, is the body’s warning sign that our lives are out of balance.

Our lives aren’t the only things suffering from a lack of balance – increasingly, in the name of journalistic balance, legitimate and accurate information is overshadowed by misleading quotes and scaremongering by those brought in to “balance” the piece. It’s one thing to include dissenting opinions when discussing the latest trend in fashionable shoes, or whether some movie lives up to the hype, but medical science isn’t about which opinion is more popular or compelling, it’s about evidence.

These articles might pay lip service to the lack of evidence by saying things like “still up for debate” or “Dr. Someone  believes that”, but placing these articles next to pieces by legitimate medical professionals lends them a degree of credibility which they often don’t deserve. When articles like these are published, the trust that is placed in well-respected and nationally read newspapers such as The Irish Independent is extended to the people who make claims about alternative therapies. They are claims that shouldn’t be trusted, claims for which they should have to provide evidence – but the mere fact of publication often means they don’t have to.

Every time an author discusses serious medical conditions like cancer, and decides that appearing to be “neutral” is more important than reporting accurately, they perpetuate the idea that alternative and unproven therapies are as legitimate as proven ones, and that when it comes to treating these conditions, everyone’s opinion is equal, even if those opinions come with no pertinent training, no supporting evidence, or an eye-watering price tag. Encouraging people to “think about” these alleged cancer causes and prevention methods essentially encourages baseless worry, reaching down to a fear of terminal illness and death that we all possess, and as no effort is made to draw a distinction between the sensible advice (eat a healthy, varied diet) and the more ridiculous advice (magical invisible lines under your bed), the overall impression one is left with is that each of these “truths” about cancer prevention are equally valid. Alternative therapies are alternative because they have either not been proved to work, or have been proven not to work, and including these therapies, simply so that you can call your piece balanced is irresponsible to the point of dangerous – a lesson which The Independent sorely needs to learn.

Share

Scapegoats and quackery

““The search for a scapegoat is the easiest of all hunting expeditions.” – Dwight D. Eisenhower

Quack clinics are often quick to claim their victories, with the smallest improvement in a condition being hailed as irrefutable proof that the treatment works. When the treatment fails, however, and there is blame to be apportioned, it seems that everyone and everything but the treatment are to be targeted.

A few days ago, we heard about Olivia Downie, who sadly has become so ill that she is unlikely to live. Her family raised money to send her to the Hope4Cancer Institute in Tijuana, Mexico, so that she could receive Sono-Photo Dynamic Therapy. The unproven  treatment uses light and sound to fight cancer, and is not generally accepted as an effective treatment for cancer. The expense, difficulty, and stress of travelling to Mexico have been compounded for the family, as the treatment has not worked, and Olivia has deteriorated significantly. She is now too unwell to fly home without medical assistance, and will need a chartered flight with specialist care if she is to be brought home before she dies.

This is a story which is all too familiar for many who read about alternative cancer treatments – though we are told at great length about the alleged successes of the treatment, more often than not, a family spends all that they have only to be separated from their loved one, and to potentially see them die alone in a foreign country. Several articles appeared today, detailing the fears of her parents that her life support machines will be turned off, because of delays in paying their medical bills. Surprisingly, instead of criticising the clinic for what is despicable, bullying behaviour, the blame has been placed at the feet of NatWest, saying that their banking problems, which caused delayed payments and account issues, are threatening Olivia’s life.

The Daily Mail opens their article by talking about the “innovative”,”life-saving”, “specialised” treatment, and gives no mention to its unproven nature (barely mentioning the fact that the treatment hasn’t worked). Later, we are told that the hospital deny making this threat, but that denial has come after a rushed payment was arranged by the family at the weekend.

 

 

The Daily Mail article quotes the mother as she spoke to the Telegraph, and the article which appears in the Telegraph is similarly uncritical of the clinic and the treatment, and eager to lay the blame with the banks.

 

The Telegraph is happy to tell us about the “life-saving” treatment which Olivia received at the Mexico clinic, and though Olivia’s mother, Linza, is quoted as saying that you “can’t blame the banks. It was bad timing, it was one of those things”, the Telegraph (among others) seem to be quite happy to blame the bank for threats to Olivia’s life support machines. In fact, as more articles appear, the focus seems to be on the role the NatWest problems may have played in the transfer of funds, and on nothing else.

I can only imagine how difficult and upsetting this time must be for Olivia’s family, but this doesn’t excuse the lazy, uncritical reporting which will almost certainly draw more attention to the clinic. The treatment doesn’t work, and it hasn’t been properly tested or proven. Andy Lewis blogged about Olivia, including a video which shows the doctors promising results that they cannot hope to achieve, lying about the effects of chemotherapy, and the effectiveness of their treatment, and articles discussing the treatment have been at best uncritical, and at worst, complimentary.

When a lone maverick sets up a clinic, because he or she has been persecuted by the mainstream medical community and Big Pharma, because they have a simple, non-toxic cure for all cancers, it all sounds a little bit too good to be true, and that’s almost invariably because it’s not true at all. The Hope4Cancer clinic is another example of this, and once again, the uncritical reporting serves only to harm the public. NatWest haven’t threatened the life of this little girl, the clinic which promised a cure based on wishes and dreams, and then threatened to pull the plug for purely mercenary reasons are the ones who should be at the receiving end of any backlash forthcoming, as they alone are responsible for what has happened.

Share

Burzynski and Patient Choice

It’s difficult to know where to start a post like this, perhaps because I most often start my posts by noting something which has been asserted as fact, and then proceed to debunk it. This post is about Burzynski, a subject which is becoming increasingly hard to write about, because two issues – namely the validity of the treatment (incorporating Burzynski’s practices, honesty, publication, etc), and the patients being treated – have become so entangled that it is difficult to discuss one without treading on ground covered by the other. Last week, after being contacted by a tweeter who asked me some leading questions about Burzynski, I tweeted the following messages:

 

This sparked a series of messages (excerpts of this particular exchange can be seen here, many examples can be seen by simply searching for #Burzynski on Twitter) the general form of which have become par for the course for any people critically discussing Burzynski on Twitter. It isn’t long before I am being asked to comment on specific patient cases (in this case, Laura Hymas of HopeForLaura), and before that specific patient is drawn in to the conversation. Despite the fact that it was a supporter of Burzysnki who originally began to include Laura in the conversation, it quickly becomes a case of “skeptics attacking a patient”.

Though I suspect our reasons will differ wildly, there is one point on which myself and @BurzynskiSaves agree on here – it is all very sad indeed; a conversation which started about a treatment, and the need to publish data, has devolved into mudslinging with patients and supporters.

Stanislaw Burzynski & Antineoplastons

At the heart of all of these exchanges are the questions of validity, honesty, and integrity – does Burzynski’s treatment work as advertised, is he being honest about the protocols that he is using and the results he is getting, and is it correct for him to be operating as he does. At the risk of treading over old ground, I do not currently believe that Burzynski’s treatment works as advertised. However, this belief is not because I blindly believe whatever the FDA tells me, or because I want to help suppress a revolutionary cancer cure; it is because I have examined the evidence presented to me, and concluded that it does not support the assertions that he is making. Burzynski’s website tells us that he discovered antineoplastons in 1967, the same year he graduated. It also tells us that he founded his clinic and began treating patients in 1977. Burzynski’s resume notes that he made a presentation on April 9th, 1988, in Kurume, Japan, at the Kurume University School of Medicine. The title of this presentation was “Clinical Results of Antineoplaston Therapy”. In order for such a presentation to be made (assuming that the details about the presentation are accurate), there would have to be clinical results, and in order for there to be results, there would have to be clinical trials. One can postulate, then, that Burzynski began trying his antineoplaston therapy, in humans, at some date before the presentation. It has been approximately 45 years since he discovered antineoplastons, approximately 35 years since he began treating patients with them, and approximately 24 years since that first presentation in which he discussed the clinical results of his treatment. This is an extremely long time to be testing a treatment without publishing significant results, moving further through the trial process, or reaching a stage where the product can be marketed to the general public. The FDA estimates that it takes approximately 8.5 years for a new cancer drug to reach the market, from inception, through trialling, and to delivery. This 8.5 year timeline includes laboratory and animal testing. The FDA have recognised that some drugs are a priority, and have even made special processes available to try to shorten this timeframe further, to allow patients to benefit from lifesaving drugs. Even allowing for extra time in laboratory development, typical delays in the process, and other factors, 45 years is an extremely long time for anyone to be trialling a drug, especially one with such astonishing results.

There have also been some questions raised about the honesty of Burzynski, and this is of particular importance when it pertains to his treatment protocols. Patients go to Burzynski when they have no other treatment options available, or when those treatment options available have proved unsuccessful or too dangerous. They do so because what Burzynski advertises is a targeted gene therapy using his antineoplastons. I suspect that many are not expecting to be given chemotheraputic drugs as part of their treatment, and it is certainly not something that is featured prominently on his website, but Burzynski isn’t just treating with antineoplastons – he’s often prescribing multiple chemotheraputic drugs for off-label use, at highly inflated prices from his own pharmacy. One patient blog talks about Afinitor and Votrient, and mentions that the patient is taking a combination of five off-label chemo drugs, along with the antineoplastons. This is not the only mention of Afinitor, there are numerous comments (scroll to comments for those) and patient blogs which mention that they are taking this (and other) chemo drug in addition to the antineoplastons. This couple maintain that they were not told that some of the drugs were chemotheraputic drugs, and that taking those drugs has cause problems with eligibility for other trials (though I am uncertain of the veracity of this site). Though the Burzynski clinic website prominently features the antineoplastons as the cure for cancer, it seems that many (if not all) of the patients are being given traditional chemotherapy in addition to the antineoplastons.

Finally, many have questioned Burzynski’s integrity, due to the prices of treatment at his clinic. Reported prices vary, but are generally in the tens of thousands per year of treatment. The FDA permits charging during clinical trials under very specific circumstances (related to investigational drugs), though it does not regulate what is charged. The FDA permits the charging so that drug manufacturers can recover the costs for making these drugs while trialling them. Although one patient blog mentions that the charge is not for the trial but for “case management” (suggesting that they are not being prescribed under this investigational drug regulation), it is possible that things have changed since this blog (and indeed, the law changed to allow for charges around the time of that blog). One can only speculate what it costs to produce antineoplastons, though Burzynski sells capsules containing antineoplastons for approximately $1 per capsule (0r $0.78, if you buy in bulk), though Burzynski seems to make most of his cash charging inflated rates for case management and off-label chemo drugs.

Data is important

It would be more than a little hypocritical of me to point out the fallacy of ad hominem attacks, and then base my own criticism of Burzynski solely on personal actions which are questionable. Whether or not Burzynski is himself ethical, honest, or even nice, if he has developed a miracle drug, he has as much right to trial it as anyone else (and even to be lauded for his discovery). Though I don’t like the stories which suggest dishonesty, they are just stories, and are as liable to bias as the patient anecdotes that “skeptics” dismiss as “not proof”. One thing which is more telling than any stories, and the point which should be focused on, is the lack of any real data to support Burzynski’s treatment. Though his website has many patient anecdotes and success stories, there are also plenty of examples where the treatment did not work, and as he seems to exclusively list success stories, they can not be counted on as reliable evidence. Most articles about antineoplastons published in scientific journals have been authored or co-authored by Burzynski himself. When people use these to point out that he has published data, they overlook the mediating factors – namely that the research hasn’t been replicated (to any significant degree) by completely external researchers, and that the journals in question are often considered poor quality. When it comes to drug development, data is king – this is simply the application of the scientific method. An assertion must have the data to support it, or else it should be considered false, and in this case, the data to support it is not reliable. It is true that there have been cases where data has been withheld from the FDA, and where drug companies have behaved unscrupulously – I absolutely won’t claim that “big pharma” is perfect – but these cases do not override the need to produce data which supports your assertion that your treatment works.

Patient Choice & Informed Consent

It has been said to me that patients don’t care about data, they care about people. They speak to people treated by Burzynski and they are given hope, and hope is the most important thing. It would be easy to keep discussing Burzynski in a very detached way, focusing only on the data (or lack thereof), but for many, this discussion is too shallow, because there are patients involved, and those patients have families and friends, and a whole host of people who would give anything for them to be better again. More than this, the patients have been drawn into the discussion, either willingly or unwillingly, and for them, attacks on Burzynski must often seem very personal, for a number of reasons.

One issue that is often raised is that of patient choice – the right of a patient to chose their treatment without criticism. Cancer treatment can be brutal, and even though treatments have improved, and the side effects are more manageable than before, there is an undeniable effect on the patient. Sometimes, patients decide that the side effects of the treatment outweigh the potential gain, and either decide to seek no more active treatment (e.g. pursuing palliative care only), or decide to seek an alternative, whether it be conventional treatment in another country/hospital, or an alternative therapy. Patient advocates, and Burzynski supporters, all maintain that patient choice is important, and I’m inclined to agree. I imagine that, if I were very ill, and the chances of a cure were not good, I would like the ability to choose whether to pursue further treatment. I wouldn’t like to deny this choice to anyone, but what I would like is for that choice to be based on the best information possible.

People say that patients don’t care about data, journals, and FDA squabbles, but even if that is true, patients do deserve the truth about their treatment, their prognosis, and everything associated with it. A patient has every right to choose alternative medicine over conventional treatment, but it is a poorly informed choice if it is based on informercials, advertising websites, and unproven claims. The fault, and the criticism, lies not with the patient, but with those who would prey on people when they are feeling vulnerable or desperate. Scientific papers are often dry and inaccessible (both because of the content, and because of the expensive paid access required to read them), and it is not as easy to relate to data points on a graph as it is to relate to a named patient, with an adorable picture and a heart-warming cure story. Quacks know this, and use it to manipulate people, helping only their own bank balance, and often leaving families devastated when the promised cure does not come about. I have been accused of attacking patients seeking Burzynski treatment, of wanting to deny their freedom of choice, or take away their last hope; this has never been the case. I don’t attack patients because I am aware of how difficult it is when a family member is sick, and when the treatment is difficult. I don’t attack patients, because I believe the blame should be laid squarely at the feet of those who manipulate and deceive patients.

A final, thorny issue is that of fake patients. Even as people call for Burzynski to publish data, there are various patient blogs reporting successes and shrinking tumours, and a multitude of patient anecdotes and youtube videos featuring people who were given a very poor prognosis, and have lived far longer than expected. Whenever Burzynski is discussed, these patients are mentioned as proof, and I have more than once been asked to comment on specific patient cases, or asked if I am, in criticising Burzynski, calling these patients fakes, shills, or liars. The truth is, I can’t comment on these cases, because I just don’t know the circumstances. I am not privy to medical treatment details, personal information, or anything like it. I see the information that is made public by the patients and nothing more. I am glad to know that there are people beating the odds, living longer than expected, and even going into remission where before there was little hope for a cure, but I can’t say what causes these events any more than a Burzynski supporter can claim them as definite proof of efficacy. I would certainly prefer to believe that we do not live in a world where people pretend to have terminal illnesses to make money, sell a treatment, or otherwise deceive people, though I know there are those who have. Asking me to comment on patient cases is ultimately fruitless – I have no way to know if people are legitimate, or if they are telling the truth when they update their blogs – and, importantly, my quibble has never been with the patients. If there are people acting as paid marks for Burzynski, then they are doing something which my conscience would not allow me to do, but they are ultimately in the employ of Burzynski, and this is where the buck should stop.

This is not, and has never been, about me wanting to take away hope, or be malicious to patients. The onus is on Burzynski to publish data to support his claims, and I believe that patients are entitled to know what data there is (or is not). Patients deserve real information to help them make their treatment choices, they do not deserve to be manipulated or lied to. This has only ever been about one thing: information. Patients deserve information, not infomercials.

 

Share

Burzynski in Ireland; arguing with believers

Earlier this morning, I tweeted a link to this very sad article, in which we are told that a toddler has passed away after a battle with cancer. Though devastating for the family, the story would be otherwise unremarkable, except for the brief mention of the treatment the toddler received. According to the article, the family opted to refuse the chemotherapy (due to the high risk), and instead, opted for Burzynski’s treatment.

I have spoken here before about Burzynski’s treatment, and the fact that I believe it to be ineffective. While I accept that some people will want to supplement conventional treatment with things that help them to maintain a positive outlook, I believe that it is dangerous to eschew conventional (and proven) treatments in favour of unproven and/or dangerous quack treatments, and I believe that it is wrong when this decision is made, not by adults for their own treatment, but by adults, on behalf of children. I realise that this is occasionally a controversial opinion to hold, and this was reaffirmed today, when I tweeted the link to that article, saying:

A #burzynski victim from Ireland – a toddler has passed away after eschewing chemo for quackery.

This prompted a series of increasingly irrational responses from a twitter user known as mrs_bopp, aka, Kate Bopp. I’d like to address some of the arguments that she made in greater detail than twitter will allow, so to my blog I’ve come. I’ve used Storify to capture the conversation in full, and you can see it here, but for the purposes of clarity, I’ll extract some individual tweets/arguments below.

  • You have no first hand experience with cancer, and therefore are ill-informed

Leaving aside for the moment the fact that my father is battling cancer for the second time, thus providing me with plenty of experience with cancer, its treatment, etc., this is a weak argument. I also have no first hand experience with Hogwarts, but I can assure you that, having thoroughly read and re-read the Harry Potter series, I am extremely well informed about it. Even if there was no one in my family or circle of friends who had ever had cancer (and extremely unlikely situation), merely having been around someone with cancer does not magically make you well informed. Research, keeping up with medical journals, reading about clinical trials; these things will help you to be informed about cancer.

  • Someone close to me died of cancer, so my opinion is more valid

Without meaning to sound callous, is there a single one of us out there who has not had a brush with cancer? I too have seen family struggle with cancer, and have seen friends die of cancer. I have had the unfortunate experience of seeing a child who I babysat occasionally succumb to cancer, and of comforting her friend (whom I also babysat), on the evening of the funeral. Cancer is extremely prevalent, and while I don’t mean to diminish the upset that anyone might feel upon losing a friend or a relative, the loss of a friend or relative does not make your opinion more important than someone else’s, nor does it make it scientific fact.

  • People who have made this difficult choice don’t need to hear your negativity

It’s true that reading comments or articles that question the legitimacy of Burzynski’s treatment will not help, in that they will not bring the child, parent, husband, sister, etc. back from the dead, nor will they cure the cancer of anyone considering undergoing treatment with Burzynski. The aim of my comments, blogs, or any other input, is not to upset grieving families, or to “steal hope” from those who have been told that the prognosis with conventional treatment is bleak. My hope is that people who research alternative therapies will also come across information about the controversies surrounding those therapies, and perhaps think the better of spending their life savings, and their last few months, on a treatment which will ultimately leave them unfulfilled, and not cured. My hope is that people will realise that convincing patient anecdotes are not necessarily proof of efficacy, and that they will not be taken in by them.

In recent weeks and months, several people have been taken to court to face charges ranging from criminal mistreatment to manslaughter. The reason? Rather than bring their child to a medical professional, they opted to use “faith healing”. In the case of the Hickmans, this resulted in the death of their son. Is it better that we spare these parents the difficulty of agonising over their choice, than inform people so that others will seek medical treatment? Is it better that we don’t discuss these cases, and stay silent while more people are allowed to succumb to treatable conditions due to their reliance on alternative medicines and faith healing? I have no doubt that the loss of a child is absolutely awful, and I have no wish to bully the parents of these children, but I also do not believe that we should hide from the controversy surrounding these treatments merely to prevent upset.

  • Do you have kids?

In the last paragraph, I mentioned that I don’t doubt how awful it is to lose a child. I can’t be certain of how I would feel in this circumstance, because I don’t have a child (or children) of my own, and therefore, have never lost a child. The “Do you have kids” argument is often thrown out as a hook – you reply that you do not, and are told that you, therefore, couldn’t possibly know what it’s like to have a sick child. While I don’t understand the exact specific feelings one has when their child is sick, I do understand that this argument is weak, and essentially baseless. The fact that I haven’t got children does not change the outcome of clinical trials, the misinformation spread about alternative medicinal cures, or the evidence upon which their debunking is based. The fact that I do not have children proves just one thing: that I don’t have children. Another twitter user (@Saoili) replied to this one, and though the tweet isn’t included in the storify, I wanted to include it here, because I believe it speaks volumes:

  • Oh yeah? Well chemo costs lots of money, and natural cures are just being held back by big pharma because they can’t make a profit on them.

Late in this conversation, some spectacular back-pedalling occurred, when @mrs_bopp, having first brought the issue of the cost of chemotherapy into the conversation, attempts to turn it around, and say that she never mentioned such things. Unfortunately, the exact free/cheap phrase is one I took from her own tweet, whereby she claims we are naive because we don’t know how much chemotherapy costs.

This is a familiar tactic – chemotherapy exists only to make money for big pharma, and other cures are suppressed to the detriment of the public. Of course, mrs_bopp, like many others, refused to be drawn on the fact that Burzynski’s treatment is far from cheap or free. Even after multiple deflections, and plenty of question dodging, there was no acknowledgement of the fact that, this treatment at least, costs rather a lot. If someone is truly convinced that there is a big pharma conspiracy, there is little that can be said which will change their minds, so the best one can hope for is to point out the logical flaws and call them on the back-pedalling.

  • You’re just close-minded

If in doubt, question my ability to believe things which are, obviously, beyond my comprehension. Ultimately, if clinical trials prove that Burzynski’s treatment (or any other alternative treatment) is effective against cancer, I will be delighted. It will represent a significant step forward in the treatment of cancers, and an improvement in the condition of patients while they are being treated. I look forward to the day when chemotherapy is not the gold standard of cancer treatments, and when there are more effective, and less toxic alternatives available. Unfortunately, that is not the case. Clinical trials have not proven the efficacy of a whole host of alternative treatments, and chemotherapy remains the gold standard because it works, and has been proven to work. I agree that patient anecdotes are compelling, and the videos and pictures do paint a very rosy picture of Burzynski’s treatment, but until I see some real clinical data, I find it difficult to believe that it is the miracle cure it is purported to be. It is important to keep an open mind, so that when new evidence arises, which contradicts beliefs that you previously held to be true, you can look at the new evidence with an objective, critical eye, and decide if it is conclusive enough to change your beliefs. It is important, also, to make sure that your mind is not so open that all your brains fall out.

The arguments that I saw this morning are by no means atypical, but they continue to be wheeled out whenever someone asks for proof, or evidence, or even just some common sense, so let me be quite clear. I am not out to make sure that people abandon all hope. I am not trying to upset families or ruin lives. I value the truth, even if that truth is not something that I particularly like, and I will continue to do so, regardless of how many people around me do or do not have cancer, regardless of whether I have children, and regardless of how many times I am accused of being heartless, or of lacking integrity. You are entitled to your opinion, and so am I, but neither of us are entitled to our own facts, and nor are we entitled to fill in the perceived blanks in scientific knowledge with whatever nonsense we chose to make up. I will continue to publish my opinion, and will expect that a percentage of people reading will disagree – and if you also wish to publicise your opinion, you too should expect some debate and disagreement – but the mere fact of your disagreement will no more detract from scientific fact than it will stop me publishing those facts.

I typically finish up my blog posts with a summation paragraph, and an attempt at some sort of dry wit, but in this case, I’m going to leave you with a Tim Minchin beat poem which resonates deeply with me (and not just because of these rose quartz healing crystals I’ve been carrying).

 

 

Share

“Don’t forget it was the chemo that cured you”

The world of alternative cancer treatments is vast and confusing, and I can understand why anyone diagnosed with cancer would want to give themselves the best fighting chance possible. Eating right, getting exercise and rest, and looking after your mental health can all play an important part in cancer recovery, but often, people end up attributing a miracle cure to a particular lifestyle change, diet change, or alternative therapy, rather than the conventional treatment that they also underwent. When that’s just a personal belief, that’s one thing, but when someone starts to market this belief, wrapped up in some pseudo-science, then they begin to step tentatively towards quackery.

Recently, I came across a leaflet advertising a seminar by Bernadette Bohan, who was going to talk about the role of nutrition in the treatment and prevention of cancer. I’ll admit to being immediately dubious, as I saw no qualifications mentioned on the leaflet, so decided to investigate a little. What I found was disappointing. Bohan has had cancer twice, and each time has undergone conventional chemotherapy. Upon her second diagnosis, she embarked upon a number of lifestyle and diet changes which she now attributes her good health to, and while, at first glance, these changes appear to be sound, a deeper analysis shows them to be based on flawed information. Undeniably, good nutrition is important, but Bohan is not a nutritionist, and goes further than just recommending good nutrition.

Primarily, Bohan seems to be an advocate of “juicing” – ingesting large quantities of juiced fruits and vegetables throughout the day. While a healthy diet will include portions of fruit and vegetables, proponents of juicing argue that drinking these as a juice is more beneficial than simply eating them. The juicing process, they say, “pre-digests” the food, making it easier to absorb the nutrients, and the inclusion of so much juice helps to heal all that ails you (reduces your risk of cancer, boosts your immune system, helps you remove toxins, aids digestion, helps you lose weight, helps manage heart conditions, etc.). Allegedly, a break from processing the fibre contained in whole fruits and vegetables will also prevent cancers. However, as a Mayo Clinic nutritionist points out, there is no sound scientific evidence that juicing does any of these things, or that the fruits and vegetables are more beneficial to us in juice form. At best, juicing may simply be a way to include less palatable vegetables in our diet, but it is certainly not a cure-all, and there is currently no evidence to suggest that drinking lots of apple juice is any better for you than simply eating a lot of apples.

Juicing isn’t really the biggest problem here – Bohan doesn’t advocate ridiculous amounts of juice (a la Gerson Therapy) – it’s just a gateway to the rest of the information on the site, for which the evidence dwindles accordingly. We are told that wheatgrass juice is a super-food, and that its high quantities of vitamin B17 (a substance that is thought to kill cancer cells), and its ability to suppress bacterial growths and eliminate stored toxins with its liver purifying chlorophyll, make it justifiably popular. Well, there’s just so much wrong with all of that that it’s hard to know where to start. Vitamin B17 has been sold, in the form of Laetrile, as an alternative cancer cure that is neither a vitamin, nor a cure. In fact, studies have found it to be potentially toxic in larger quantities, possibly resulting in cyanide poisoning. Oh, and it’s completely ineffective in the treatment of cancer too. This isn’t just a slip - on another page, a piece on “Power Foods” tells us about the wonders of B17, this time in great detail.

Chlorophyll is something that many will have studied in school, as that important chemical which plants use to get energy from light. And humans use it for… well, nothing in particular really. Chlorophyll is used by plants in the process of photosynthesis, to fuel the conversion of carbon dioxide into compounds the plant can use (e.g. sugars). As we don’t photosynthesise, it’s not especially important to us, and indeed, doesn’t function in the same way inside us. No amount of chlorophyll will help you detoxify or oxygenate things – we simply cannot use it that way. At best, we might gain some scant nutritional value from it as it passes through our dark, non-carbon dioxide filled, digestive systems.

Bohan’s advice doesn’t stop there however; she also takes care to tell us that it’s not just what we’re putting in our bodies, but what we’re putting on our bodies. Antiperspirants, we’re told, contain aluminium, which accumulates in our brain, and “the link with Alzheimer’s disease and aluminium compounds has been scientifically proven.” This is nonsense. There is, at best, circumstantial evidence to link aluminium and Alzheimer’s Disease, and overwhelmingly, medical and scientific professionals agree that no causal link has been demonstrated between the two. There is not enough evidence to make a strong recommendation to remove aluminium from your life, or to switch to a different antiperspirants (or stop using one altogether), and the link between aluminium and Alzheimer’s is so tenuous that to state that it has been “scientifically proven” is an outright lie. On this point, I actually complained to the ASAI, and was told that I was told that, because it was an editorial, they are “not in a position to pursue [my] complaint.” In which case, any advertiser may, clearly, write whatever they please on their website, as long as it’s an editorial, so it’s open season folks!

Finally, we come to her seminars, which are, after all, the reason I came across Bohan in the first place. For €500-€650, you can attend a three day wellness seminar with Bohan herself, featuring numerous workshops, talks, juices, and other fun activities. A little research pulls up some timetables for previous and upcoming seminars, in which Bohan will discuss her organic, alkaline diet, and be joined by Jackie O’Mahony, to discuss healing visualisations and cell healing. Without heading off on a tangent to discuss alkaline diets (unproven) and cell healing (which actually could be any one of a number of pseudo-scientific nonsense techniques), it’s clear that there’s a heavy emphasis on the alternative treatment options at these seminars, and based on her site, this emphasis extends throughout her philosophy.

While I’m not opposed to eating healthily, and making positive lifestyle changes to improve your chances of beating cancer, I’m also not naive enough to think that juicing or dieting or any of it will, alone, kill cancer. Throughout Bohan’s site, she reinforces the importance of her new diet, but it’s rarely mentioned that what did the curing was the chemotherapy. It’s easy to become wrapped up in the idea that something as palatable as fruit juices and supplements will help you to avoid the difficulties and side effects associated with chemotherapy, but this woman didn’t cure herself using fruit juice. I don’t believe her intent is malicious, but rather, that she has been misinformed. By seeking out information on the internet, and from alternative medicine sources, she has put together a programme that is so jam-packed with disproved and debunked information that it’s hard to see where one piece ends and another begins. With her own cancer cured, and her book setting her up as a mother who found her own way to healing through an alternative prescription, it’s easy to see how people would be taken in. Her book is selling well, she has appeared on tv, and she’s becoming more prominent in the field of alternative therapy. It is not, I think, such a big step from “juices helped to cure me” to “juices cured me”, and I fear that this is where Bohan is rapidly headed.

When Bohan told her oncologist about her life changes, he replied “Don’t forget it was the chemo that cured you“, and I think it’s such an important statement. Of all the alternative cancer cures that have been advertised, not a one has been scientifically proven to work. I know what the effects of chemo are because I watched my father go through chemotherapy. I shaved his head when he lost his hair, I watched him wake up looking positively exhausted and pale, and I saw the effect it had, not just on his body, but on his mind. I know that the side effects are undeniably difficult, but the fact of the matter is that chemotherapy, and not Laetrile or wheatgrass or juices or any other alternative treatment, cures cancer. Chemotherapy demonstrably and repeatedly cures cancers, and as the technology has developed, it cures more cancers, more effectively, than ever before. I can imagine wanting to forget the hair loss, the nausea, the tiredness, but forgetting the cure? Not for me.

Share

How much does hope cost?

How much would you pay for hope? £75,000? How about $140,000? Given a life-threatening illness, or a chance to completely change your circumstances, I’d guess that most people would say that hope is priceless, and that they would pay anything, and indeed, everything, for that chance at hope. The fact that hope is priceless often comes up when discussing medical treatments, particularly those for terminally ill people.

Skeptics are often decried as horrible people who aim to steal hope from people when they debunk various quack treatments, dangerous cults,  or weird beliefs; in many cases, these quack treatments have successfully preyed on very vulnerable people who are trying to fight something that we probably all fear – an early, or untimely, death. And who are we, the nameless, soulless skeptic, to come and tear this last hope from the hands of the dying?

Well, in answer, I’d first like to turn my initial question around – we all probably have a good idea of exactly how much we’d pay for that last dash of hope, but how much do you suppose you’d charge for it? An assertion oft put forward by proponents of alternative medicine, for example, is that there are cheap and effective treatments available for many life-threatening conditions, such as cancer and AIDS, but that because the molecule can’t be patented, “big pharma” can’t make a profit, and therefore isn’t interested. It is lucky for us, therefore, that these renegade magicians are available to offer this cure, at this extremely cheap price, to everyone, profit-free. Oh, wait. That’s not quite right. Actually, each “cheap and effective” cure that “big pharma” ignores because it can’t turn a profit is usually bundled up with some appropriate pseudo-science sounding nonsense, perhaps tacked to someone with a dubious qualification, and usually offered to the public at the phenomenal price of approximately $your life savings$…

One such treatment recently brought to light is provided by the infamous Stanislaw R. Burzynski. While his name is often followed by a string of letters indicating credentials, I won’t include them here. Their legitimacy is questionable at best:

Burzynski’s claim to a Ph.D. is questionable. When I investigated, I found:

  • An official from the Ministry of Health in Warsaw informed me that when Burzynski was in school, medical schools did not give a Ph.D. [1].
  • Faculty members from at the Medical Academy at Lubin informed me that Burzynski received his D.Msc. in 1968 after completing a one-year laboratory project and passing an exam [2] and that he had done no independent research while in medical school [3].
  • In 1973, when Burzinski applied for a federal grant to study “antineoplaston peptides from urine,” he identified himself as “Stanislaw Burzynski, M.D, D.Msc.” [4]

Quackwatch, Nov 2006

This treatment, involving an unproven substance derived from human urine, will allegedly cure numerous forms of cancer with virtually no side-effects, and far fewer damaging effects than the standard treatments of chemotherapy and radiotherapy. It’s a treatment that one British woman, Laura Hymas, is saving hard for, because both she and her family are banking on it giving her back her life.

It is at this point that skeptics tread a very narrow line, and agonise over writing posts like this. Do you tell this young, photogenic woman with her adoring husband, and their adorable son, that their last hope is hopeless? Or do you let them scrimp and save for the treatment, knowing with a good degree of certainty that it’s likely to result in her spending her last days away from her husband and son, squandering both time and money on a treatment that will do nothing good, and may even worsen her condition.

Many people adopt a hard line, saying that if people are gullible enough to be sucked in, then, as the saying goes, fools and their money are soon parted. That’s a bit too hard for me; when you are desperate, the blinkers must surely be hard to shake off, and the drive to see only the information which gives you hope must be immense. And often, these charlatans are convincing. Burzynski’s website is not a laughable hack-job – it’s full of official looking documentation, attractive patient before and after photos and stories, and pages full of pseudo-medical jargon that could easily mislead anyone who is not looking to disprove the treatment (and, after all, if it’s your last hope, are you looking to disprove it?)

Whenever skeptics debunk pseudo-science, nonsense treatments, or other questionable beliefs, there is always someone who will say “what’s the harm” or “why does it matter if someone believes that <insert treatment here> will cure them”. It’s true that, in a lot of cases, there’s little harm; your headache will go away whether you do nothing, take aspirin, or take homoeopathic belladonna, and the only difference is likely to be the time it takes to go away. But what of those who don’t just spend a few euro on sugar pills to rid themselves of a headache? What becomes of those people who spend their last months receiving IV urine derivatives, or forcing down juices while receiving coffee enemas, all while their life savings dwindle away? They die, and often, their families are left in severe debt, paying for the treatment that “big pharma” doesn’t want you to know about.

Earlier, I asked how much you would pay for hope. £75,000? $140,000? £75,000 is the cost of one 12-month cycle of Burzynski’s “life-saving” treatment, not including transport and accommodation costs, etc. This is the amount that will not be covered by the NHS or by health insurance, because the treatment is not sanctioned, and is, to date, completely unproven.

$140,000? This is the amount of money recently paid by one Robert Fitzpatrick to spread the message that the Rapture was coming on May 21st. He is a retired American man, and it represents his life savings. On May 21st, he stood in Times Square, clutching a bible and handing out leaflets explaining what would happen, and when nothing did, he was left dumbfounded, saying “I did what I had to do. I did what the Bible said. I don’t understand why nothing has happened.” Unfortunately for Mr. Fitzpatrick, life goes on, and he’s now broke, and likely, a broken man. The Rapture was a joke to many, but some people invested heart and soul, and significant finance, in it, and now, they have been left with nothing.

Pedalling false hope is a charlatans game, practised by the lowest of the low. They prey on people who have found themselves in desperate situations, and who have found themselves low on hope. They take advantage of vulnerable people, and leave them financially destitute, and once again, hopeless. Sometimes, the nonsense they sell (whether it is a physical product, or the promise of the metaphysical divine) is so laughable that it’s easy to forget that it’s not a victimless crime.

I can only suggest that anyone who truly wishes to help cure the diseases which rob us of friends, relatives, and loved ones, should donate to a respected and established charity or trust, or even donate time to help care for those who are dealing with these illnesses. Medical science is making huge advances, and diseases once thought deadly are now treatable, and in some cases, curable. As for the rest, we’ll get there. I hope that Burzynski doesn’t get a cent of that money, and that instead, the Hymas family can use the money to ensure that the time Laura has left is as amazing as it can be. I hope that she is the outlier, and that she does recover with conventional treatment. I hope that Robert Fitzpatrick manages to find some solid ground to stand on, and that he is not now rendered so hopeless as to consider his life meaningless. Mostly, though, I hope that people who pedal false hope are found out and stopped.

While writing this post, I was reminded of a poem by Emily Dickinson, which I studied in school. It is called “Hope is the thing with feathers”, and for me, it has always spoken right to the heart of hope itself – it never stops, it is not abashed, and it asks for nothing.

Hope is the thing with feathers
That perches in the soul,
And sings the tune–without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I’ve heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me

 

Update (28/11/11): You may be interested in another, more recent, post about Burzynski.

Share