Posts Tagged ‘twitter’

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.

 

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Susan Greenfield: I h8 u

My love-affair with the Baroness Greenfield started and ended when a colleague, on hearing about some of my interests (in this case, neuroscience, and science fiction), presented me with a copy of Tomorrow’s People: How 21st Century Technology is Changing the Way We Think and Feel, assuring me that it was fantastic, and that I would absolutely love it. The blurb certainly made it sound exciting – a critical look at how existing technology and future technology may shape the way we think sounded pretty interesting, and like something I would enjoy reading. Sadly, any sense of enjoyment that I felt had largely seeped out of me by the time I reached the end of the first chapter. I slogged on through the book, determined to finish (and to see if it improved), but barely struggled to the end. The book itself is not one that I can recommend. Far from being the eye-opening, explosive treatment that the cover promised, I found it to be a sub-par, overly-general, ham-fisted description that barely nicked the surface of future technology, that seemed hesitant to actually discuss effects on the brain, and that seemed more like a school report written by a teenager who had just read their first sci-fi book, and was completely new to many of the concepts. In short, it was patronising, uninformed, and rather dull.

Well, writing a bad book isn’t a crime – there are plenty of stinkers out there – and nor is it reason enough to hate someone. What makes me bristle whenever I hear the name Greenfield in a news report or an article is the unsupported, scare-tactic declarations that will inevitably follow, all stated by someone who is a qualified scientist and who, at least allegedly, wishes to promote science to the world. At first, I put it down to a strong difference of opinion. As a child/young adult of the 21st century, I have wholeheartedly embraced technology, and all that it can do for me, whereas Greenfield appears to be somewhat neophobic, or at the very least, technophobic. Now, though, I’ve come to realise that it’s more than just that.

What really bugs me is that, in so many ways, she’s similar to the kind of quacks I often blog about – she claims that modern technology is ruining the brains of our children (won’t someone please think of the children), and yet endorses and sells a “brain-training” computer game, despite mounting evidence that these games have no demonstrable effect on brain “age”, memory, or “fitness”; she makes sweeping claims about the effects of social networks, without evidence to back up what she’s saying; despite being asked repeatedly, she has yet to formalise any of her assertions in a paper (which could be examined, peer-reviewed, etc.); she claims to promote science, yet mostly seems to use her publicity to promote herself, and her unproven, unsubstantiated theories about modern tech and social networking – but unlike most of the quacks, she’s actually a scientist!

It seems that not a week goes by without an article or news report telling us how social networking sites are ruining our lives, melting our brains, or stripping us of our social skills. Whenever this comes up, we usually here about the same few cases repeatedly (the online bullying suicides, the facebook divorces, the twitterati spats), and are then told that if we continue to use these sites, we will become mindless drones, unable to pay attention to anything, unable to communicate in real life, and incapable of having friendships that exist outside of Facebook. All of these assertions have two things in common; there is absolutely no evidence to support them, and Greenfield insists on repeating them at every given opportunity. Unlike most of the “social media experts” or quacks who may prattle on about magical HIV curing boxes, or soundwave mp3s that cure cancer, Greenfield is someone who should know better. She is someone who certainly has the resources and the pull to conduct a proper study to establish the truth about brain change due to social networking, but for some strange reason, she refuses to do so.

I don’t personally believe that the advent of social networking will lead to the decline of humanity. I think that that is an attitude held mostly by those with an incomplete understanding of the technology in question, and how people really use it. In every scenario, with every new “big thing”, there will be some who misuse it (by abusing it, using it to hurt others, or simply damaging themselves through overuse), but generally, these people are the outliers, the exception, rather than the rule. For each messy “Facebook divorce”, it’s easy to find literally thousands, if not hundreds of thousands, of people who use the site as intended – sharing photos, reconnecting with old school friends, and organising events, to name just a few functions. However, I’m a reasonable person and, above all, a scientist myself. If someone presents me with the studies, and they show that there really has been a change, for the worse, in our brains, then I will happily eat my words, and laud Greenfield as a visionary. However, in order for that to happen, she’d have to behave like a scientist (rather than a sensationalist) and actually do the research. As a scientist, she should be responsible enough to ensure that when she says that computers are damaging children’s brains or causing obesity, she possesses evidence to back it up. As a particularly PR-savvy scientist, she should be well aware of the fact that her name carries significant weight, meaning that people will believe what she says more readily. And finally, as a scientist, it’s her duty to back up her claims; to do the research, submit the paper, and allow it to be reviewed by her peers. Until then, it’s just empty words.

As a woman, a scientist, and someone working in an industry that is typically dominated by men (I.T.), I have a much more personal quibble with Greenfield. Recently, she was sacked from the Royal Institute. Although the exact reason is unclear, there has been much speculation about the reasons for her being sacked; among them, the massive debt in which the R.I. finds itself after a renovation spearheaded by Greenfield (although, in her defence, the trustees did also agree to go ahead with it). There are also rumours that the sacking may have been much more personal, and that there was a personality clash between Greenfield and other members at the R.I. The one thing that is certain, however, is that Greenfield is preparing to take the R.I. to an employment tribunal to allege, among other things, that sexual discrimination played a part in her sacking.

While it may be true that seeing a woman like Greenfield in a prominent position somewhere as respected as the R.I. may well have encouraged and inspired other young girls to pursue science, I believe it is also true that her tribunal will quash any such inspiration more effectively than any public sacking could have done. If there was an issue with her sacking, as there may well have been, then she has every right to take them to a tribunal, but why, oh why, must she play the gender discrimination card? Doing so sends so many messages, and they’re all bad. It tells people that, when firing a woman, you always risk a frivolous lawsuit. It reinforces the stereotypical notions that women are a bad hire because they will cause problems. And it helps to maintain the corrosive attitude that exists almost everywhere today – that women need special treatment to get along in the workplace. If there was a gender issue, then of course, she should address it, but I don’t believe that to be the case. Instead, I believe that she has seized upon the fact that it is a predominantly male workplace to class her sacking as a gender issue, and avoid the real problems. Frankly, I think it’s beneath her.

Baroness Greenfield, I (along with many others, I’m sure) invite you to write up your research into social networking, and present it to the scientific community at large, so that we may review it, and possibly benefit from the knowledge held within. And on a purely personal note, with regard to your recent termination, I recommend that you “take it like a man”.

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Gillian McKeith Has no PhD

Yup, there it is in black and white.

Over the last few days, Ms Gillian McKeith has been causing quite a storm on twitter by misusing the service, and then trying to back away and deny it. This would maybe have worked, if the service wasn’t also used by a number of very tech-savvy people, who know that the best policy is to save and screenshot everything, so that when the inevitable denials come, there is proof. It seems that Gillian would have been better off investing in a fake PhD in Social Media, and perhaps this all wouldn’t have happened.

So, where on earth did it all start? Well, It seems to have started with a woman called Rachel Moody, who noted on twitter that she was about to start reading a chapter in Bad Science (by Ben Goldacre) about Gillian McKeith. This prompted a series of pretty nasty replies from Gillian, claiming that the poster was anti-american, that Goldacre was a liar, and other such statements. Unfortunately for her, some clever sort decided to take a screenshot of the tweets, which meant that when Gillian decided to back pedal and delete the tweets, pretending they never happened, the screenshots remained. Image source: http://scienceblogs.com/pharyngula/2010/07/gillian_mckeith_does_not_have.php

Clearly worried about her image, Gillian has been trying to distance herself from this twitter account, first by beginning to tweet in the third person, as if it were someone else behind the account, and then by posting explicit declarations that it wasn’t her – “Do you actually believe this is real twitter site for the GM?” For a moment, you might be tempted to believe that it was all an elaborate hoax. For just a moment though, until you begin some basic fact checking, and discover that it’s essentially just another lie to add to the pile.

You see, what Gillian forgot is that you can’t suddenly delete yourself from the internet, because there will always be a remainder somewhere – be it in a cache, in a screenshot, or in the lazy code where you don’t properly remove the twitter link from your official website, but instead merely comment out the code…

Unfortunately, many people know how to look at website source code, and so it was immediately obvious what had happened. If more proof were needed, well one would only have to look at a screenshot taken from her website earlier today, where the twitter link was in pride of place alongside her other social media badges. Luckily, I have just such a screenshot.

People have been finding other forgotten links all over her website too – links in email newsletters and on less prominent pages, all encouraging you to follow Gillian on twitter, at her official address, www.twitter.com/gillianmckeith – it seems that the lazy webmaster also forgot to remove links beyond the front page.

What has the response been? Well, aside from roundly ignoring any requests for clarification, Gillian has been blocking people who tweet that she doesn’t have a PhD or other similar statements.What could have been solved with an apology, and a clarification, has instead turned into a nasty little mess and a PR disaster. Still, there are lessons to be learned here for all parties involved; 1) The print screen button should be your best friend when dealing with people like Gillian McKeith, who is a quack of the highest order, 2) Having a fake PhD doesn’t make you smart, and 3) Clicking “Undo” on the internet is a good deal harder than you might think.

Collected Screenshots not shown above

Gillian points us to her official twitter – at www.twitter.com/gillianmckeith. Can’t figure out why that url seems so familiar…

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