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.

18 Responses to “Burzynski II”

  1. Anonymous Says:

    Quite, and timely. Thanks.

    While the tiny minority who overstep in this way are probably vastly outnumbered by the trolls who hurl online abuse at sceptics, that minority needs to be zero. Hopefully a predeliction for scepticism makes self-appraisal more likely.

  2. Riddle Like (@endless_psych) Says:

    I always feel it is important to remember that there were two tweets aimed directly at a patient campaign using the Burzynski hashtag on twitter and one incidence of a debate where people copied said campaign into their replies debating the efficacy of treatment.

    The second case I give the benefit of the doubt and treat it as an artefact of twitter itself and the reply function the other two instances (at least on of these tweets has since been removed) were, I hope, extreme lapses of judgement on the part of the individuals involved. I would also hope that they have learnt from this and will think twice before engaging in such a matter.

    I think it is important to remember that when looking at recent events critically. As there is a risk that this small lapse (in this instance – others have been worse in the past) comes to define the whole Burzynski affair. There is also the risk that it might alienate those who were sensible and sensitive about the topic and enforce an ironic “chilling” effect in future.

    A thorny issue to grasp and a tricky line to walk.

    All that said the issues highlighted above and in other recent blogs are things we should be mindful of.

    It is far too easy to dismiss skeptics or paint them as the villains in such situations and even when the vast majority of blogs and tweets are generally sensible and sensitive (though some that were not aimed at anyone were occasionally emotive and aggressive) a few misjudged and idiotic comments can undo any good work that has been done very easily.

    As a general rule though not directly contacting patients or patients groups is sound advice. These people are not idiots, they aren’t stupid and in the case of Burzynski they don’t want to be told they are likely to die when the treatment fails.

    To my mind it takes a spectacular empathy FAIL not to realise that and thankfully I think most have.

    There is already a negative stereotype attached to the word “skeptic” or the notion of “skeptics” as a group, whether we like it or not, and we have a choice to help perpetuate that or make people think otherwise.

    • noodlemaz Says:

      Indeed.

      As I said, it might seem obvious to many but to some it isn’t. That may not be any fault of theirs – a lot of people do have genuine issues empathising with others. Hey, it’s the internet; it’s the aspie’s paradise.

      Unfortunately, people can be incredibly lovely but make huge mistakes communicating with others. Many do not wish to cause any problems and I hope that by spelling out what the problems are, we can really minimise the damage.

      The underlying point is that we’re making a big deal out of this because of real concern for vulnerable people.

      The Observer, for example, is suggesting otherwise and making some strange point that apparently this concern is too much.

      Reminds me of when people tell my sister (a vet nurse) ‘Oh I couldn’t possibly do what you do, I love animals too much!’ – well, sorry, but if you really loved them you would put them out of their misery where necessary, perform surgery on them to save their lives and make some really tough decisions. Sometimes really loving someone or something means doing some things that might be perceived to be uncaring – but it’s not.

      Just in this case, going directly to individuals isn’t right and I hope that message will get through.

  3. Andy Says:

    Agreed. What are your thoughts on commenting on Burzynski sites – like the Facebook page – given that a lot of the audience there will be people undergoing, or ready to undergo, treatment?

    • noodlemaz Says:

      I think the Facebook page is a difficult one actually.

      A lot of the people there are just avid alt med/maverick ‘genius scientist finds cure’ fans, they’ll crop up all over the place. But there will also be individual patients, yes.

      I’ve commented on one of the threads a couple of times, simple to reiterate the position that people are digging up the facts behind his work and that the rest of us are human beings too – we’re not out to deny people any effective treatments.

      It’s a strange place, and to be honest I’d probably go for leaving it be for the most part, but I don’t think a facebook discussion is the same as twitter, really. I’ll have to think about that a bit more.

  4. Unity Says:

    I don’t know if the account you’re referring to but haven’t named is the same one for which I’ve just checked every single tweet, in and out, for the last 30 days, but if it is the same account then I can find nothing to indicate that anyone has tweeted anything untoward directly into their time.

    Rather it would appear that they have, on a couple of occasions, voluntarily tried to play human shield for Burzynski and are complaining about the coverage on blogs and not about anything that has been sent to them directly.

    Of course, we could just be talking about different accounts here, but this seems to fit what I’ve seen on the #Burzynski hashtag – secondhand references to some people having complained about being approached via Twitter, but no first hand evidence of any such unsolicited approaches being made.

    • noodlemaz Says:

      If there aren’t any, that’s good – I hope that continues to be the case. But I’ve had conversations in which people don’t see the problem with doing so (whether they have done or not) and that bothers me.

      I agree most of the accusations are pretty baseless, but it would be better if we could be sure they were 100% inaccurate.

  5. Mike Ward (@Schroedinger99) Says:

    Maybe I’ve not seen a representative sample but all the really offensive tweets I saw were from Burzynski apologists/supporters to sceptics and there was certainly nothing untoward in Andy’s or Rhys’s blogs.

    I also think it should be pointed out that there’s a distinction between “mentioning” an individual in a tweet (eg @Fred) and mentioning an organization (eg @Give2Fred) that is fund raising to allow Fred to pay lots of money to Burzynski for his, almost certainly, inefficacious “treatments”. (Though I take the point that there may be little or no actual distinction between @Fred and @Give2Fred. An “organization” like this may be effectively a “one-man band” with a website.)

    While I fully agree with the suggestion that it is quite wrong to berate Burzynski’s victims for their gullibility – by insisting on one’s own “correct opinion” and riding roughshod over “the feelings of others” – groups of people, who collect money from others to give to the likes of Burzynski, do have moral obligations towards those from whom they receive money and from those who might admire their example and follow it.

  6. josephinejones Says:

    It’s disappointing that people tweeted Burzynski patients out of the blue, in a less than tactful way. To clarify, I personally replied to some quite angry tweets from a patient. There were several of these and I thought it would have been rude and cowardly to ignore them. I also should have made clear to my followers that I don’t blame her for being angry at me and that, upsetting though it is, I can handle it. She is entitled to lash out at me. Anyone contacting Burzynski’s patients is not doing so in my name.

    I think the overwhelming majority of bloggers and ‘skeptics’ (incidentally, this kind of behaviour discourages me from identifying as one myself) who have commented on the Burzynski scandal have done so with sensitivity (and with a respect for the facts). That some people have been tactless has enabled The Observer to paint us all in a bad light, particularly Andy Lewis and Rhys Morgan (who were named in the Readers’ editor column).

    It is another important point that people outside the ‘skeptical’ community see us as some sort of network (as the infamous Red Arrows email demonstrates). It is not just the likes of Marc Stephens who have this impression: the patient who had been angry with me on Friday had also contacted me that morning to point out an error in someone else’s blogpost.

    As Keir Liddle has pointed out several times (see 21st Floor post linked above), we should be doing what we can for the patients and make it clear that the issue is not with them.

  7. MedTek (@medtek) Says:

    Having lived and worked in Houston hospitals and healthcare in the city most of my career, I was very intrigued to learn of this story. I’ve seen many people die of cancer, and in Houston if you have cancer the place to go is M.D. Anderson; indeed many of my friends work there, friends and neighbours have been patients there. So I jumped right in when Andy wrote his blog, horrified at the attacks on bloggers (and I knew about Rhys as well from private conversations and was very angry after he posted his as well).

    But then there were tweets that made me wince. I began to think, “what if a patient or parent saw this?” They’re not stupid. What would I do were I a parent? You want to do everything. And I also began to think “what if Burzynski is really onto something?”

    Nobody wants to think they’ve been duped. These people aren’t stupid. They don’t want to lose their loved ones. What would I do if the doctor I trusted said that nothing more can be done?

    How must they feel then when we trot out lists of those who have been treated and died? What purpose does it serve? When we call the man in whose hands they have placed their, or their loved ones’ lives horrible names? What possible good can this do? It is not going to stop anyone from literally going to the ends of the earth to save their loved one.

    And Burzynski: I can’t say for sure if he’s the monster some have made him out to be. Certainly Mark Stephens is a very naive and irrational person. But perhaps I think Burzynski is a person who had an idea and lost his way in the pursuit of proving it. Maybe others are right though, maybe he’s a greedy charlatan who knows he’s not helping anyone. But I wonder if he’s not a desperate man himself, with an idea he thought was brilliant but not working as planned, throwing every drug in the book at patients while convincing himself that his idea is still valid, finding a willing and enabling ear in the Mike Adams and Mercolas of the world.

    But then I see his other enterprise and think maybe not. I don’t know (but many people I do trust seem to have a pretty good idea). I do know that if there is valid positive evidence to be found, this publicity can only help bring that to light. And if not, I hope that this publicity can bring the sad story to an end. Sadly though there will always be another to take his place.

    • noodlemaz Says:

      I mostly agree, but I don’t think you can take home $1m a year from people who have come to you trying to escape death, who die anyway, and not be either mentally ill or quite evil.

      If he is ill, then he needs help, but above all he should be stopped because people are destroying what little life they have left based on his claims. And families are being robbed.

      There doesn’t seem to be any good evidence that this really is an amazing treatment – it doesn’t even make any sense that it would be. These trials have been going for so long. If there were something in it, companies would be marketing it. The data would be out.

      But this isn’t the case, and all we see are the red flags and the ducky smell of a quack. That’s the sad case – but people really should be thinking before they speak a bit more. Bit of navel-gazing needs to happen now and then!

      • MedTek (@medtek) Says:

        I agree. I don’t think he’s doing anyone any good here. It seems to me he’s had some hits and many misses. That’s no way to practice medicine, of course the alt-medders will tell you that is how conventional medicine is practiced.

  8. Dr Aust Says:

    I would be pretty sure Burzynski believes his own sales pitch 100%. It is the Galileo Gambit all over again (see also ‘Saint Andy’ Wakefield), and it comes through strongly in some of the stories from (particularly US) journalists who have interviewed him. I think it is actually pretty typical of the ‘Brave Maverick Doctors’ (see especially the category on (‘Academic Iconoclasts’) who have started in the mainstream and then ‘Gone to the Dark Side

    Of course, this tremendous and bullet-proof self-belief is, sadly, in itself a source of harm to patients, since it encourages them to (mis) place their trust in such folk, their alternative clinics, and their dubious messages, methods and therapies.

    Anyway, congrats on a really excellent post. I think your section on ‘Philosophies and Ethics’ nails it absolutely in explaining why these cases make people in mainstream healthcare so angry, especially when it involves children

  9. Emma Geraln Says:

    All I can say is that I completely agree with you. Be it on twitter, or face to face there are times when the truth will bring nothing but pain.

    We have to fight the battles we can win.

    Once all conventional options are gone, particularly with a child all that remains is hope. You will cling to anything, any hope, dream, anything. That is the crime if these vile people and that is why you are right, attacking the desperate is (unintentionally) cruel and pointless.

  10. Anonymous Says:

    well, for all of you who are just guessing and haven’t had the “burzynski..horror”, I’d be only TOO WILLING to fill you in on the REALITY of it.

  11. Ask for Evidence – Miracle Cures | Purely a figment of your imagination Says:

    […] actually stopped being actively involved in the “anti-Burzynski” campaign, largely occurring on Twitter, […]


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