Science Wooseum Revisited

Time for an update on the Science and Art of Medicine – Living Medical Traditions exhibit in the Science Museum, London!

If you’re not familiar with the backstory, do check out these posts or listen to my report in the Pod Delusion live 2nd birthday episode – go, make some tea and a sandwich while it’s on or something

Briefly, we’ve been trying to improve the Science Museum’s alternative medicine exhibit as there were some serious problems with it. It largely came across as promoting alternative treatments, even advertising practitioners and generally being worryingly uncritical, with no reference to the results of reliable studies (i.e. that most of the ‘treatments’ are no better than placebo and many carry serious risks) – and indeed no mention of the wonderous placebo effect at all.

I’ve highlighted some of the original displays and issues in this photo gallery, now with some new photos – though a lot of them are appallingly blurry, apologies – in this new set.

Important statement

We are extremely glad that the Science Museum has chosen to listen to these complaints and do something about them. To take a second look at something (that people have worked hard on and are likely proud of) with an objective eye, receive criticisms, consider them and make some changes – that is admirable, it’s scientific and what we might expect from such a great institution.

I think in summary, some very important changes have been made, which is excellent. But more could (and should) be done as it’s still far from the resource it could be (I’ll come back to this at the end*).

Proposed Changes

Last year the museum proposed some changes, based on discussions with Simon Singh and the rest of us. They decided the main sections to focus on were homeopathy and acupuncture – while I agree these were the ‘main offenders’, the whole gallery exudes quite a credulous vibe, but I am completely accepting that a total overhaul would take a lot of time and money so let’s look at these two sections for now.

Homeopathy

From the correspondence:

As you know, we are already proposing to make some changes, on the advice of trustees, to make it quite clear that we are describing specifically the Indian context. In general, as far as I can see, you share the sense of what changes out to be made. You have nonetheless expressed two concerns that we should like to address. We will therefore follow your suggestion and add a parenthetical observation:

Homeopaths believe that ‘like cures like’. This means that homeopathic practitioners will give a remedy – often highly diluted (to the point that a bioscientist would say it contains no active substance at all) – that produces the same symptoms as the illness.

I presume the focus is on India because of the resources available for the exhibit. I’m not sure why otherwise, given that homeopathy was invented in Germany and is used worldwide, to varying degrees of disaster (I’m not exaggerating – keep an eye out for Martin Robbins’ experiences of homeopaths in Africa for more in that vein).

The other strange thing here, for me, is bioscientist. What does that mean? Also, chemists, physicists and mathematicians all agree that the very idea of homeopathy is ridiculous and scientifically meaningless.

The homeopathic travel kit was proposed to be removed entirely but as you can see only the caption has gone – so now people just don’t know what it is. I suppose it would be odd if it were just an empty space? Some text has been removed from the panel and now simply describes the image of a woman preparing her ‘homeopathic treatments’ at a ‘baby clinic’ – which makes me sad in itself.

They have also, as Alex suggested, changed their wording – all cases of doctor have now been replaced with practitioner. This is a good thing.

Acupuncture

From the correspondence:

You have also raised the issue of acupuncture. Taking on board all the advice we have been given we cannot agree with David Conquhoun‘s suggestion that the advice of NICE should simply be dismissed. NICE set the national standard estabilishing whether a “clinical treatment [or set of clnical procedures] is considered highly effective, cost effective and safe, as well as being viewed as a positive experience by patients.” Whilst there may be good reasons for overturning their conclusion about the efficacy of acupuncture this process has to be achieved by debate in the public arena, and that has not yet happened.

Obviously I, and no doubt David, would dispute this, but I’ll just leave that there and move on.

The old board:

New text:

Painkillers alone just weren’t helping Stephen’s knee pain caused be osteoarthritis, so his general practitioner [GP] recommended acupuncture. Here’s his story.

Stephen is a retired clinical psychologist, but still enjoys walking and travel. His knee pain was severely restricting his day-to-day activity and he was considering a joint replacement. But he was anxious to avoid surgery of that kind because of concerns about complications and the variable success of the procedure.

His doctor recommended acupuncture – this is offered by his NHS GP surgery and administered by biomedically trained medical and nurse acupuncturists.

Fine needles were inserted into acupuncture points around Stephen’s knee and areas of local tenderness and left in place for up to 15 minutes. Each treatment led to greater and more prolonged relief of Stephen’s symptoms.

After four weekly treatments at first, Stephen now comes to the acupuncture clinic every 6-8 weeks for a ‘top-up’ which keeps his symptoms under control. Aside from reducing pain and the need for painkillers, the acupuncture has allowed Stephen greater mobility, which itself is important in managing the symptoms of osteoarthritis. As a result Stephen thinks his quality of life has improved.

The last sentence no longer says ‘…his quality of life has improved enormously‘. Finally, a new caption underneath:

Acupuncture has been rigorously tested by medical researchers for a variety of ailments. These tests have shown that acupuncture can relieve pain and this is why it is available as a treatment on the NHS. The NHS summarised its current judgement in a review published in 2010 on the internet at:

www.nhs.uk/conditions/acupuncture/pages/evidence.aspx

So osteoarthritis of the knee is cited as a condition for which positive evidence exists. Rheumatoid arthritis, on the other hand, has been shown to be unaffected by acupuncture treatments. What’s important to note is the qualification on this page:

this evidence does not allow us to draw definite conclusions…More research is needed to investigate whether acupuncture works for these conditions.

So I’m still not sure the exhibit expresses the weakness of the current evidence – but at least there’s a link.

Most pictures have been removed, as have captions suggesting GPs endorsed the treatment as effective. For some reason the (presumably fictitious) patient’s name has been changed from Ian to Stephen and he’s now suffering from osteoarthritis in the knee instead of shoulder/neck pain, presumably due to a quick read of the above link.

Mention of Stephen being a retired clinical psychologist is interesting. To me this would suggest an attempt to legitimise his choice of acupuncture as he was involved in medicine himself. Appeal to authority?

While Jonathan Freedman (top right of the old panel) no longer appears in the upper part of the new display, sadly the advertising for the St Albans clinic below remains.

Introductory Panel

Finally, another change that was accepted to be important was the wording that greets visitors on the first explanatory panel. The new is on the left (bit small, sorry) and the old on the right.

Thankfully, the following statement was added:

Contemporary research shows that many of the practices are, from a scientific point of view, ineffective.

And an important clarification has been made:

even today 40% of the population of China use Traditional Chinese Medicine clinics as their first (and often only) choice for healthcare.

Whereas before it was simply an argumentum ad populum – that loads of people use it, ergo it must work/be acceptable (bottom of the right-hand photo).

Other changes made & suggested

Most importantly, the awful interactive video display has been removed completely.

What is disappointing is that some of the things I would consider to be quite dangerous are still there. For example, this description of the herbal product Masturin, about which I can find no actual research, but oft-repeated claims of this nature:

DESCRIPTION

Uterotonic, specific for female disorders. Prepared from herbal ingredients like Saraca indica, Withania somnifera, Abroma augusta, Berberis aristata, Rauwolfia serpentina and iron acting solely on female reproductive system.

INDICATIONS

• Uterine tonic
• very effective in P.I.D.
• Relieves pain in Dysmenorrhoea

A herbal uterine tonic it tones up the nerves and ensures pain free and regular periods. Made from herbs

It worries me that this product is on display along with the claim that Joshanda ‘treats colds and flu’ – it’s this kind of uncritical exposure I take issue with. I know the anthropologists want to claim it’s about looking at culture but I really think you can do that in a safer, more informative way.

Also I was disappointed to see no changes to ‘Professor’ Shi Zaixiang’s board, relating to the claim that he was diagnosing and treating Ménière‘s disease. Also the acupuncture model at the start has not been adjusted so that it no longer claims ‘point BL-60 can be used to treat headaches‘.

*I’m not saying that it should all be a total bloodbath (which is what many ‘skeptics’ might want) but it should reflect what the research has shown – more obviously and comprehensively. It should explore negative sides to these traditions (and more recent inventions) – for example, as my friend pointed out, the devastating impact of TCM on wildlife, making many species endangered and even extinct. Also, ideally (and for me most importantly), tieing in the placebo effect with modern medicine and how the discovery and development of the randomised controlled clinical trial has revolutionised healthcare.

The main thing that drives otherwise rational and caring people to submit themselves and others to quackery when they are vulnerable is ignorance – not of the wilful kind, but most people just don’t know how medicine works. Juxtaposition of alternative ineffective treatment modalities with confirmed effective medicine is the perfect teaching tool.

I’m not trying to be patronising. I am frequently upset by hearing of parents dragging terminally ill children around the globe chasing false hopes and subjecting them to invasive, pointless treatments that often cost them their life savings and cause the child a lot of pain when they could be doing fun things and enjoying what life they have with their loved ones.

What’s a shame is that available expertise hasn’t been utilised. I find this puzzling:

The suggestion that we consult Edzard Ernst is of course a valuable one. However there seems to be little disagreement about the facts (beyond the discussion in which we turn to NICE as an authority). Instead the issue which has been very helpfully brought out in these debates is whether the exhibit can be misconstrued.

I would say that consulting an expert in alternative medicine in constructing an exhibit about alternative medicine would be useful in tackling clarity and factual issues alike.

If anything can be done to make the general public more aware of what they can and can’t trust, medicine-wise, I’m for it. I think this gallery could play a part in that – but at the moment it isn’t. To be noted is that they are planning a ‘radical overhaul’ of medicine in the museum generally so more input from funders and visitors would no doubt be useful.

—

To finish, there’s this hilarious comment in the TCM section:

You don’t have to be ill to need treatment

Well that just sums up alt med perfectly, doesn’t it!! (Also, lifestyle is important in medicine and wellbeing full-stop. Any doctor worth his salt will tell you that, and we hear it all the time; medicine IS holistic. Why do people think otherwise?!)

Burzynski II

Sorry for the unimaginative title, but I get the feeling number 2 won’t be the last and at least this makes it easily searchable.

In this post, I want to talk about people’s online behaviour regarding this issue, think about it a bit and hopefully get others to do the same. It’s not a sciencey one (lots of links at the end for that, though), but I hope people will read it nonetheless.

I would say that the general acceptance of alternative medicine by the general public (and indeed the NHS, having walked past the ‘Hospital for Integrated Medicine’, formerly the Royal London Homeopathic Hospital, again the other day) creates a dangerous accepting background for these kinds of situations and media coverage of them (the BBC as well), and is a huge contributing factor in people’s choices. So that’s where raising awareness of the dangers and lack of evidence behind alt med as a whole comes in.

With the recent publication of an ‘apology’ from the Observer – actually it’s not an apology, it’s a hamfisted justification for their worryingly positive portrayal of the Burzynski clinic in the previous article that drew all the attention in the first place – it is unfortunately time to step back and really think about what’s going on here. Andy wrote an excellent post in reply the same day over at Quackometer and Josephine Jones is collating responses here.

Today Keir Liddle has also written a good post at the 21st floor starting to address the question of how the anti-Burzynski crowd (let’s call it that, to avoid ambiguity and meaningless labels) is coming across. In addition, upon hearing about people tweeting directly at patients enrolled at the clinic, Hayley Stevens posted her thoughts.

The issue

I am very concerned about this. A very small number of people are thinking it sensible/acceptable/useful to send tweets to people, one account in particular which I won’t link to here, who are paying for Burzynski to treat them. Let’s call them patients.

Let us set the scene.

These people are very ill. They have cancer; most of us have experienced family members and/or friends dealing with various types of cancer (it’s important to remember it’s not just one thing, just as virus isn’t – measles is a specific disease, as is pancreatic cancer, but cancer alone is an umbrella term) and do try to bear in mind how big an emotional toll that takes.

Generally if they have made the decision to spend their life savings and more on a last-ditch attempt to find a cure, you can be sure they have been giving a certain amount of time to live. They know they are dying and, while we all are, when your mortality is thrown in your face by something like a diagnosis of terminal cancer, your perspective is likely to change.

Also, having made said decision to spend thousands on a certain strategy attempting to prolong your life, some strangers shouting at you is unlikely (to say the very least) to change your mind.

The effects

Next, let’s think about what Twitter is. For those of us that use it, this really shouldn’t be difficult to get our heads around, however I’m finding that it actually can be.

Twitter is a bit like your text inbox, or ceefax if you really aren’t an internet person (though in that case you’re unlikely to end up here… anyway). It’s a stream of events coming to you from out in the ether, you read it when you feel like it, unless you have alerts set up as well (like a text notification noise and/or vibration), in which case you’re more aware of each time you get a message through.

Imagine you are one of these patients and your twitter feed starts lighting up with messages from concerned skeptics. They’re telling you that the man you’re giving all your money to is a fraud, a liar and a quack. They’re telling you you’ve been conned, duped, you’re wasting your money and your time.

Now, one reasonably polite message from you, you think, surely won’t come across badly?

I’m just concerned. Surely it’s better they know the truth?

Normally, yes, I prefer the truth over a dangerous lie any day. But again, these are very vulnerable people who have already made a commitment. What possible benefit do you think your attempt to enlighten them will bring?

Imagine your twitter feed/inbox filling up with messages from people you don’t even know, have never met and will never meet, telling you these things – insinuating that you’ve made a horrible decision so close to the end of your life (for yourself or family members). One message from you, one message from someone else… how many hundreds of people are following? If they all decide to raise their concerns, do you think this is positive?

Think about it

Here’s my problem.

I do believe the vast majority of skeptical types and everyone who is following and contributing to this story are good people, people who are concerned for their fellow human beings, who don’t like to see an unscrupulous, ethically blind man take advantage of the sick and dying. I like to think most people I engage with in any case are that kind of person.

But if you think it’s ok to force your voice into the world of the people mentioned above, in this context, then I am concerned. I am concerned that you are being selfish.

Why? Because, as I said, telling people whose minds are made up about all this evidence for Burzynski being a conman is going to make no difference to them, except make them feel horrible, and they don’t need any more of that.

Aren’t you just going directly to them because you want to absolve yourself? You have information, important information, that you feel everyone should know about. Informed decisions are the best kind. People are ill, you don’t want them to do the wrong thing – that’s understandable. But it’s too late. As much as you want them to listen to you and change their minds, that won’t happen, so don’t approach them in the first place, please.

Harsh truth

You want people to accept an awful reality, but I’m afraid you must do the same. We cannot help everyone. The patients are not the target here – nor are the generous fundraisers who have already made commitments to give their time and money (even if we feel it is misdirected, again, you cannot ask people to go back on their well-meaning promises) – because no amount of data and facts will convince them that what they’ve committed to isn’t right. They have access to all of the things coming to light, which they can read if they wish. Directing your otherwise well-intentioned concerns at them will not help.

We have to accept that however much we would like everyone to suddenly see the light and embrace the truths that have been unearthed, that’s not going to happen.

This information must be shared so that fewer people in future, when faced with such a terrible situation, will go down this path. What we don’t need is people coming across as insensitive and rude with no concern for people’s situations – because then things like that nasty Observer editorial will happen, and as a minor point – the reputation of the ‘skeptical community’, whatever that is, is tarnished. That can really have a negative impact on whatever good we can glean from these kinds of occurrences now and in the future.

It’s similar to politics; it’s the fence-sitters and undecideds, not the safe seats, on which attention needs to be focussed, if you actually want to make a difference.

Philosophies and ethics

Today a friend shared this excellent article about how doctors tend to deal with death. They don’t fight for every last second they can muster, they realise what can and can’t be done, what’s inevitable and what’s important. Quality of life over quantity, in the case of many terminal illnesses.

A friend of mine who is a doctor recently told me of a patient who had had very serious strokes and was not going to recover. She had got to know her and the family well, and they were arranging for her to go home to spend her last few days with her loved ones. However, a senior doctor who was rarely on the ward decided to come in and instead override that decision, recommending her instead for rehabilitation – keeping her in the hospital, trying to get her to restart, essentially. She died in hospital, without her family, and my friend was, understandably, incredibly angry. There are serious questions about prolonging life, which are beyond the scope of this post, however.

A major finding that Sense About Science has is that people who spend their last months chasing hopes around the globe, spending their money and time exhausting themselves – when it’s all over and done with, loved ones will wish they had just spent time together, enjoying what life they had left.

That is the real crime; that people like Burzynski and all the other quacks we will continue to attempt to expose are exploiting people’s desire for life to continue, and in doing so, they rob them of it.

I haven’t written about it before, but when a good friend of mine died of an incurable form of brain cancer, in addition to the loss, pain and anger, I was also relieved. Relieved that her family was so strong and dealt with it so well – she spent her last time in a hospice, with wonderful care (the amount of respect I have for end-of-life carers cannot be expressed in words), with family around. We, her old friends, were also allowed to visit her, for which I am very grateful.

Unfortunately, children cannot generally make sense of such a situation and cannot make their own decisions; their parents will make them instead. The act of dragging a child across oceans for invasive medical procedures that cause them pain and impede their ability to enjoy the life they have is seriously questionable in ethical terms. Again a bigger issue, but something else that should be considered if you are thinking about engaging families of patients directly.

Do you want to accuse people of causing their children pain? Again, the hope is to prevent people from taking such decisions in future, but addressing those who cannot be swayed is simply pointless and brings no benefits.

Don’t be a Dick

We’ve said it before and we’ll say it again.

I think the number of people who would send such messages because they are just dickish, want to spread their correct opinion around and care not for the feelings of others is very small.

The rest of the people, I expect, are well-meaning but are directing their concerns the wrong way. Your anxiety for their situation is not the point, your desperation to tell everyone you find who is doing something you consider stupid or wrong – in this case, you must keep it to yourself.

There are factors that make this particular case distinct from, say, homeopaths trying to treat illnesses for which effective medical treatments are available. It’s different from people who want to take their baby to the chiropractor. If you can’t see why, read slower, think more – leave a comment? I’m finding that some people get it, some don’t. If you don’t, at least refrain from saying things before you’ve asked a few people.

This is important – for this case and how it could turn out, for the people involved (also, who must remain anonymous wherever possible, for the above reasons), for the skeptics.

Links

Here are a few links, stuff that’s been happening in the #Burzynski tag, for those who aren’t following.

Science-Based Medicine addresses the fact that Burzynski is often using cocktails of chemotherapeutic drugs on his patients. Drug combinations that are not approved for the types of cancer in question. Drugs that some patients are unaware they’re signing up for. Drugs people are specifically hoping to avoid in many cases. Sadly this is common with a lot of alt med; especially TCM. Actual drugs are often included, at unknown levels and from unverifiable sources, making the treatment even more dangerous than if it were just harmless.

An important analysis of what’s really going on with Burzynski’s claims of approved treatments, publications and specific types of cancer patients they recruit, from the Ministry of Truth.

The clinic issued a Press Release suggesting their ‘representative’ Mr Stephens had been fired*, but we bloggers would still be pursued for libel. *Though he is still listed on the Patient Group website as the “Marketing & Sponsorship” contact  (noted by @writerjames ).

Some hard reading showed the list of publications in said press release to be, bluntly, crap.

Martin Robbins has also been in touch with the clinic about Stephens and received a response.

Even the BMJ have picked up on the story now.

Skeptical Humanities is researching patient outcomes. Sadly they are overwhelmingly worst-case-scenario, with only a handful of survivors.

Saul Green had researched in the past Burzynski’s claim of having a PhD, which seems to be false.

Josephine Jones is still updating the Burzynski-topic post Master List

On charging to enrol people in his trials. Interestingly, if one wishes to donate donate to clinic, one writes cheques to him personally!l

The clinic on Facebook – where the wall was shut down and many people came out with ‘this isn’t a place for negative comments’ type comments. Worrying.

The cancer act is rarely enforced – but it is illegal to claim you can cure cancer when in fact you cannot. @jon_S captures such a claim.

Some of the costs of a course of treatment at the clinic are described here by some people who went there.

Burzynski

I think it’s time for me to say something on this subject. It is after all very closely related to my current… vocation (if one can call it that, being a PhD student still!) and impacting directly on some of my friends.

One of those friends is my co-host of our long-neglected podcast, Super Duper Woo-Fighting Duo (With Capes)! – Rhys Morgan.

Edit: even BoingBoing is on it this evening!

Background

Feel free to scroll down to ‘The Threats‘ and ‘Some Interesting Correspondence‘ sections if you know all this…

The subject is one Stanislaw Burzynski, based in Houston, Texas. He offers an experimental treatment (though to call it that is probably a bit generous) to cancer patients called “Antineoplaston Therapy”. These antineoplastons are claimed to be peptides (bits of protein – though they’re generally not, technically – see comment 11 for more) found in urine. When a difference between cancer patients’ and healthy individuals’ urine peptide profile was found, an assumption was made that cancer sufferers were lacking these protein chunks and therefore replacing them should be an effective cure. A list of his patents and publications can be found here. This NYT article is extensive and demonstrates the shocking wealth accumulated:

… the gross income of Dr. Burzynski and an institute he runs was $40 million from 1988 to 1994… he took home $1 million a year.

However, the theory itself is dodgy at best and years of tests have not convinced the worldwide medical community. Yet Burzynski continues to run his clinic, charging people tens of thousands of dollars with promises of efficacy and hopes of being cured – even if the patients have been given a few months or years by doctors elsewhere.

Edit: this is shocking – records show Burzynski threw random chemotherapy cocktails at people (those saying chemo kills; well, he certainly didn’t seem to do his research on it), failed to disclose pharmacy ownership conflict of interest, did not alter treatment despite scans showing no improvement... Texas Medical Board might finally be doing their job.

Also see here for his public record – makes for a disturbing read. Plus, they also have a range of ‘healthcare products’, unsurprisingly – glorious website full of scibabble nonsense words and indeed typos.

What’s happening?

Now, more and more people are starting to criticise this man and his practice and the tactics we have seen so many times before – legal threats, bullying, hoping to silence – are coming thick and fast. There is now a petition asking the clinic to release a concise, publicly-available review of all the clinical trial data it has accumulated over the years.

The turning point was this uncritical article in the Observer about a stricken family with a little girl suffering from a serious brain cancer. The family details their emotional struggle – one which many of us will sympathise wholeheartedly with – and the resulting search for hope, their sights landing on Burzynski’s clinic.

Peter Kay offered to do some benefit gigs to help towards their $200,000 funds goal for this ‘treatment’. These were on the 24th and 25th November last week, and tonight the Comedy Store in Manchester is hosting another with various acts. I also saw a tweet reporting that BBC 6 Music had run an advert for one of the money-raising events.

Many immensely generous donations have been made. It is heartening to see human kindness at work – but so very upsetting given the circumstances.

Here are some e-mails regarding the article that were not published (or at least, not fully) by the Observer – a lot of people are concerned by their endorsement and the lack of provision to challenge what was written. Obviously this is a sensitive issue, around a grief-stricken family, but many others will continue to suffer if this is not properly addressed.

Publicity around this man and his dealings has soared today, as a result of retweets from Stephen Fry, Ben Goldacre, Dave Gorman, Dara O’Briain and continuing valuable support from others such as Simon Singh.

Another friend of mine, Kat, has written a fantastic post for the Cancer Research UK blog – this is serious stuff and those of us who have watched people deal with such a terminal illness do not want to see them swindled, spending their hard-earned savings lining fraudsters’ pockets and losing precious time with their families and loved ones.

Some people who have been directly affected have set up their own website in the hope that others won’t follow in their footsteps: http://www.burzynskiscam.com/

The threats

So, regarding the bullying I mentioned. Rhys wrote a post in mid-August detailing his views of Burzynski, backed up with accounts of past occurrences – including this case:

“Dr. Stanislaw R. Burzynski, had defrauded the plaintiff and violated the terms of the health plan.
We agree that the defendant may not trick the plaintiff into paying for an unlawful, unapproved drug. We AFFIRM.”

and how the 30+ years of trials have yielded very little to support the claims made. Check out Quackwatch from way back in 1998 for more.

He had to take the post down at the beginning of this month but he has now published all the correspondence here – please do have a read (also on Google+, and I’m pasting it below (click ‘read more’ if you’re on the blog homepage and can’t see it) because his site keeps going down!).

His silence was broken because Andy Lewis started receiving his own threats after he wrote his criticism of the Observer article, Kay’s unquestioning support and the issue as a whole. Another here for your amusement. Also read more from The 21st Floor, David Gorski, scienceblogs (good comments), Peter Harrison and Zen Buffy – Josephine Jones is compiling a kind of I Am Spartacus! list for posts on the subject.

Some interesting correspondence

A friend sent me this link to a September 2004 letter to the editor of the academic journal Integrative Cancer Therapies (who have published quite a few of Burzynski’s papers) from a researcher by the name of Andrew Vickers. He takes issue with an article by Burzynski published in the journal in March of that year:

Burzynski SR. The present state of antineoplaston research.
Integr Cancer Ther. 2004;3(1):47-58.

I’ve downloaded and saved this paper if anyone wants a copy, get in touch on Twitter or in the comments so I can e-mail you.

The article cites 73 papers and articles, 38 of which have Burzynski as first author, and a further 10 have his name as one of the first 3 authors – probably he’s in the list somewhere with the rest – plus a couple have one Burzynski B. (presumably a family member). If you search his name in PubMed, 45 articles are returned.

—

Moving on to Andrew’s letter regarding the paper cited above, it’s reasonably short – again if you want the PDF, get in touch, but I’ll paste it here with minimal commentary at intervals.

“Editor:

I read with interest Dr Burzynski’s recent review of research on his technique for treating cancer.1 I have several serious concerns about the scientific quality of his article. The first results presented by Burzynski concern glioma. It is claimed that 7% of 62 evaluable patients had a minor response. However, no fraction of 62 rounds to 7%: 4/62 is 6.45%, 8/62 is 8%*. There is also no fraction of 62 that rounds to 36%, the proportion given for objective response.”

So we can be fairly confident that he’s fiddling numbers from the get-go? * It has been pointed out that this is a mistake: 5/62 is 8%. Presume this is just a typo on Andrew’s part – the point remains.

“Burzynski goes on to report preliminary results of clinical trials on colon cancer conducted at the University of Kurume Medical School in Japan. He claims that the “survival rate of more than 5 years” on antineoplastons was 91% compared to 39% in the chemotherapy control group. Burzynski states that “the study was randomized and compared the results of treatment in 19 patients on . . . chemotherapeutics and antineoplastons [with] 56 patients who received . . . chemotherapy alone.” Yet the reference cited (reference 68) is to a case study. Moreover, a 91% survival rate for 19 patients is impossible, as it corresponds to 17.3 patients.”

 Again some weird numbers coming out, and reference to an article claimed to be about a trial, yet is in fact a study of one case.

“Burzynski also reports a single-arm study of 16 patients with liver cancer in which it is claimed that patients had longer recurrence-free intervals on antineoplastons than off. The citations supporting the claim include a case report and a lab study. Furthermore, the figure illustrating the results shows “time to recurrence [statistic not stated] in patients given antineoplaston AS2-1 after standard chemotherapy compared to control group.” This is despite there being no control group in the study.”

Again no reference to actual trials, but to a single case and lab-based work. Plus a lack of controls (so no valid comparison/conclusion can be made).

“There are several other serious shortcomings of the article. Survival data are presented in bar charts: the techniques for presentation of survival data (such as Kaplan Meier) are well established and were developed specially to deal with issues such as censored data; bar charts are unable to incorporate these features of survival data and are therefore considered inappropriate. No number presented in the text (eg, proportion surviving 5 years) is presented with a measure of uncertainty, such as a standard error or confidence intervals.”

 No reputable clinical study would discuss survival using bar charts. Kaplan-Meier curves have been standard for years. Also he’s presented no statistics for confidence in these numbers.

“I am aware that Burzynski is presenting preliminary data, and I have made no comment or criticism concerning the failure to present inference statistics. Nonetheless, even for a preliminary report, I see no excuse for the use of idiosyncratic and highly inappropriate techniques of presentation, failure to incorporate basic statistical estimates, citation of studies in support of statements when those studies have no bearing on the referring statements, inclusion of obvious mathematical errors, and citation of data for nonexistent control groups.”

He cites Burzynski’s study, to which he is referring, at the end of the letter.

—

Burzynski then wrote a reply! In the same month as Vickers’ letter was published (emphasis mine):

Reply to Vickers 

“Editor:

After reading Andrew Vickers’s letter, one may wonder  why the Assistant Attending Research Methodologist  of the prestigious Memorial Sloan-Kettering  Cancer Center would argue about 0.5% of minor  response and statistics that were not required, while  entirely missing the big picture: a proof of concept  and data on efficacy of antineoplastons in Food and  Drug Administration–supervised clinical trials involving  more than 200 patients. Vickers’s many arguments about unimportant issues obscure the realities of the data that we have presented, which indicate remarkable results in cancers for which chemotherapy and radiation are ineffective.

Publication of my article titled “The Present State of Antineoplaston Research (1)”1 occurred at the same time (March 2004) as the printing of Vickers’s article, “Alternative Cancer Cure: Unproven or Disproven?”  in the March 2004 issue of CA: A Cancer Journal  for Clinicians. In his review article in CA Cancer J Clin, he made reference to only 2 articles on antineoplastons published since 1987. He failed to cite more than 40 of our publications and approximately 300 publications by other authors on antineoplastons and their derivatives. In his letter to the editors, Vickers criticizes reporting of results of the clinical studies conducted at our clinic and also at the University of Kurume Medical School in Japan.  The criticism of our report concerns rounding out percentages to the nearest number. That is why we reported 36% of objective responses instead of 35.5% and 7% of minor responses instead of 6.5%. In the article, I also presented the actual number of patients, allowing readers to make their own calculation.

Vickers objects to my presentation of survival data in bar charts. This objection is unjustified in the context of my review. Kaplan-Meier survival probability estimates are more appropriate for detailed reports describing individual clinical trials. In my review, which describes numerous past clinical trials, there was not enough space for these estimates. Also, one should not compare apples and oranges. We can easily produce Kaplan-Meier diagrams for our studies, but, unfortunately, they were not published for comparison studies, such as Prados et al.2 If Vickers reads our recent articles describing survival in antineoplaston clinical trials, published in peer-reviewed journals between 1999 and 2003, he will indeed find Kaplan-  Meier data. Our data on the proportion of patients surviving 5 years contain no uncertainty, since they are  not estimated but true survivals. The patients are either dead or alive after 5 years. No standard error or confidence intervals are necessary.

The final reports on the studies conducted at the University of Kurume had not yet been published at the time my manuscript was submitted to Integrative Cancer Therapies. Japanese researchers have published preliminary reports and case reports; these were listed as references. The Kurume researchers presented the summary of research data directly to me with permission for publication. I described these as “preliminary results” on page 55 without making any changes.  Those researchers are now preparing the final reports for publication.

In conclusion, I believe I have sufficiently answered  Vickers’s questions regarding the clinical trials conducted  by our clinic. Further details will be provided in a number of articles that are now in preparation for  publication.”

Make of that what you will – no further correspondence noted.

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I’ll just paste the acknowledgements from the paper in question here as these names may be of interest, and comment that the figures are generally of very poor quality, for a 2004 paper:

The studies were sponsored by the Burzynski Research Institute and supervised by its Institutional Review Board (IRB). The membership of the IRB was in agreement with the FDA. The authors [just Burzynski, for the record] express their appreciation to Lucy Rorke, MD, professor of pathology and neurology, University of Pennsylvania, Children’s Hospital of Philadelphia, for review of pathology slides; Dieter Schellinger, MD, professor of radiology, chief, section of neuro-radiology, Georgetown Hospital, Washington, DC; and Joshua Pleasure, MD, M. D. Anderson Cancer Center, Houston, Texas, for evaluation of MRI and PET scans.

The following physicians at the Burzynski Clinic (BC) participated in the study: Robert I. Lewy, Robert Weaver, Marc Bestak, Maxwell Axler, Alonzo Peters, Benjamin Saling, Barbara Burzynski, Tomasz Janicki, Jaroslaw Paszkowiak, Vishnu Alapati, Dmitri Davydov, Vsevolod Dolgopolov, Barbara Drynia, Andrzej Himmel, Wojciech Iwanowski, Gabor Jurida, Mohammad Khan, Eva Kubove, Grace Ormstein, Joseph Nguyen, Mohammed Radmard, Basel Salhoot, Barbara Szymkowski, and Marek Walczak.

The following senior scientists (PhD), microbiologists, pharmacists, and engineers at the BRI and the BC participated in basic research: Robert Waldbillig, Majciej Klimczak, Elwira Ilkowska-Musial, Leszek Musial, Anna Baranowska, Piotr Kuligowski, Ryszard Madry, Donat Manek, Mike Mokrzycki, Andrzej Wieczorek, Anna Wisniewska, Kris Wisniewski, Irma Witkowska, Dennis Wright, and Iwona Zapedowski.

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I’ll paste Rhys’ post below in case his site is down.

Helpful Poisons

Cancer Research UK run the Race For Life evens, in which thousands of people from all walks of life, young and old, go out and run/walk to collect sponsorship money that’s donated to CRUK.

My boss – known in the building as one of the many PIs (Principal Investigators) who head the lab groups in the Institute we work in – went along with her 6 year-old daughter to go up on stage and thank people for participating.

I spoke to her about it a while ago and she told me how moved she was to see so many people come out to do their best on a Sunday morning, raising what money they can so enthusiastically. That she was very emotional surveying the sea of people in pink who had turned up to support each other and by raising that money, the scientists whose work aims to improve the treatments we have for cancer. That includes our lab. Plus the patients and their families who have to go through all of it.

Her daughter asked “why are all these people getting cancer?” – because they’re ill, she replied. I know I wouldn’t have understood such a concept at that age either so her determination is admirable.

What treatments we currently have are by no means ideal, although curing people of cancer does happen, contrary to popular belief. Sadly, googling that kind of thing will lead to lots of alt-med scam sites trying to tell people if they just eat raw peppers or rub hemp oil on themselves, their tumours will disappear. This is incredibly damaging for hopefully obvious reasons.

Tough Love

Many chemotherapeutic drugs do cause horrific side-effects that make people feel very ill (of course, they are already seriously ill, but often we don’t feel it just from the disease itself). That’s because chemo, generally, is a form of poison. Alt-med proponents will often try to use that fact to make medicine sound bad to people they want to convince to use alternative products instead – sadly, people fall for it sometimes and this of course can have the worst consequence.

It is designed to kill living cells – the cancer cells. Anything that’s capable of doing that is likely to be unpleasant – remember that awful hangover? Your liver cells weren’t happy about that night, certainly. Fortunately most of us drink sensible amounts and don’t end up causing liver cancer when we’re enjoying the effects of alcohol.

Therein lies the important element – sensible amounts. The thing about drugs is that dose is everything – we’re finding this more and more in our research and perhaps I’ll write something about that at a later date.

Chemo drugs are carefully researched so that doctors know how much to give – how much should kill off the cancer most efficiently, while doing as little damage to the rest of the person as possible. The reason it often makes people feel ill is that there will be some damage – off-target effects, as they’re known – to normal tissues.

Much cancer research currently focuses on developing different drugs that will be entirely tumour-specific, eliminating or at least drastically reducing side-effects.

The thing about cancer cells is that they grow too quickly, they’ve gotten around the normal checks and barriers cells have that tell them to stop growing. Most cells don’t grow and divide in adults, they’re stable – with obvious exceptions like the lining of the gut, which is constantly replacing itself, the womb lining during the menstrual cycle, hair follicles…

And this is where the chemo side-effects come in. We target cancer cells’ ability to grow and divide a lot with these drugs, which unfortunately also go for some normal, non-cancerous dividing cells. Hence the hair loss effect that’s commonly seen (not with all drugs) and other painful/unpleasant things.

Now we have other treatments, for example radiotherapy targeted very specifically at the tumour with highly-specialised machines designed to minimise off-target exposure. Since the radiation used is also what can cause cancer (by damaging normal DNA – this is why you need to wear sun cream!), you don’t want to hit normal tissues with it any more than you absolutely have to. This is another alt-med favourite, ‘Cancer treatment gives you cancer! They want you to come back for more!!’ – it’s conspiracy theory at its best. There’s truth in it, but it’s been distorted away from reality.

Cause, simplified

If you can damage cancer cell DNA to the point where controls do kick in to destroy the cells, that’s a good way to kill tumours. But also, as I said, DNA damage is what causes cancer in the first place – it can come from various sources; hereditary cancers are mainly or entirely (example) due to mutations, that are passed down from previous generations, in particular genes that usually control cell growth.

Sporadic cases of cancer occur when there’s too much exposure to environmental carcinogens – be it sunlight (UV), cigarette smoke, alcohol or a combination of many subtle things – in that case the normal DNA is damaged in places that are important for maintaining cells’ in-built anti-cancer controls.

These two distinctions and the explanations are extremely simplified but hopefully making sense (?).

That’s why it’s still a numbers game – you’re not 100% certain to develop cancer even if you do things that do involve carcinogens and they may well have damaged your DNA, the point is that particular damage may not have occurred in places that affect the cells’ anti-cancer controls. Only if it occurs in genes that regulate cell growth in some way will it then possibly lead to cancer. Even then a number of other changes will need to occur in that population of cells that are now growing more for cancer to take hold.

Thing is, once you have some damaged cells that are growing more frequently, there are more chances for further DNA damage to happen as cells replicate. As the population gets bigger, the likelihood of the changes occurring in ‘bad’ places (i.e. further reducing the barriers and promoting growth) only increases.

So it’s a question of risk. It’s a gamble, if you want to smoke, for example. For me it’s absolutely not worth it – why spend money on something that does nothing but make you a drug addict (sorry, but that’s the case, for those who don’t insist it’s just a social thing and I can quit whenever I want) and increases the chance of your lung cells becoming irreparably damaged to the point where you may well lose a lung, or indeed your life? ‘Cool’ is very subjective, and those things don’t fall within my list.

At least the liver has alcohol dehydrogenase – but it’s still a question of dose, and ADH doesn’t apply in oesophageal, pancreatic or other cancer types.

Everything in moderation

Sure, we can’t obsess about everything every minute of the day – but there are sensible and easy things to be done to protect yourself and your family – for me, that’s completely worth it. Once you’ve watched a loved one die of cancer, whatever form, whether they had a hand in its occurrence or not – well, I don’t need to say more.

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The people who get up and raise money for institutes like ours all over the country, and the world, do contribute to the medical establishment’s ability to treat cancer. They deserve all our thanks.

Cancer is immensely complicated, we don’t fully understand it yet, but the more everyone does know, the better we can cope with it.

Maybe one day we’ll look back in wonder that so many lost their lives to such a thing; as we look now at little cuts and grazes when bacteria killed so readily, before we understood their existence and found (relatively) simple ways of dealing with them.

This seems a nice future to hope for.

No Yeo Valley

My brother recently sent me some interesting correspondence he’d had with Yeo Valley reps, due to stumbling across this fairly shocking content on their website:

the routine use of antibiotics as a preventative measure to treat our cows’ ailments is not permitted.

Well yes, good, but…

As a result of this Steve, the Herd Manager on one of our farms began investigating alternative options to the use of antibiotics and began studying a course on homeopathic treatments. Since then, Steve has been implementing what he has learnt by using homeopathic treatments and remedies to treat his cows for a number of issues, including warding-off flies and easing the cows’ stress levels when having their feet clipped.

The treatments have so far proved successful and, unlike with antibiotics, cows don’t build up immunity to these remedies. In fact, they encourage the cows’ immune systems to fight bugs themselves.The use of homeopathic treatments not only helps to develop a more robust immune system, it also means no withdrawal periods for milk and meat while the animal is being treated, as would be the case when antibiotics are used.

Argh. Seriously?! What a load of tosh.

So, ma bro sends them an e-mail.

Homeopathy huh – won’t be buying anymore of your products then if you believe in treatments with no scientific proof. What other woo might you be trying I wonder.

A little terse, but hey. They did reply, beginning with:

Thank you for your recent email, we always appreciate hearing from our consumers. We are always pleased to get feedback and thank you very much for your comments.

Sadly they went on to copy-paste from their website the chunk I’ve quoted above, followed with some more from the website:

However, this doesn’t mean we completely avoid more conventional treatments; if we need to treat an animal quickly and effectively we will always choose the treatment, either conventional or alternative, that will be most beneficial to the cow to aid its recovery and this may involve antibiotic use.

Oh good! That’s a relief.

Steve’s convinced that homeopathic treatments offer a viable, practical option so he continues to favour treating his herd homeopathically whenever appropriate. I shall pass your email along to the farm and they will contact you in due course if interested. 

Is he now. Sounds like he needs reporting to the appropriate welfare board to me.

I would like to reassure you that we operate the highest level of animal welfare standards on all of our farms.  Not only are we strong supporters of the welfare system developed by The Soil Association for cattle producing organic milk, we also take care of the environment in which we operate and act responsibly and ethically in how we do business. Organics standards strictly admonish zero grazing techniques; cows cannot be permanently housed, but must spend the majority of their lives outdoors. The cows must have appropriate bedding and adequate space when they are brought indoors during bad weather during the winter months.

All very reassuring yes indeed, thanks.

Being an independent, family owned British business, we value our reputation and the loyalty of every one of our customers who buy our products.  We have built our reputation on a combination of quality and word of mouth and would never knowingly do anything to jeopardise this.

Thank you once again for writing to us.

Kind Regards

Sally Laurie – Marketing Team

Unfortunately (for the company; fortunately more generally) plenty of people are well aware that homeopathy is bunk, it has no effect, being just water/sugar, and using it instead of actual treatments is simply irresponsible. Even if it is used in addition to proper treatment when required, this is still unnecessary, a complete waste of money and possibly traumatic for the animals depending on how it’s administered.

Interestingly, Zeno also contacted them back in January and received a very similar response from ‘Sally’.

Disappointing that a company claiming to value its customers’ views cannot answer such questions more effectively, but hopefully in time and with enough pressure, such ridiculous ideas will no longer be entertained and people won’t be employed to peddle such nonsense.

Edit: see also this correspondence between some of the Brighton Skeptics and the Soil Association regarding their use and support for woo in farming.