How “they” view “us”

Those of us who dedicate considerable time and effort to combatting quackery generally do it because we think we’re doing good. Certainly, I wouldn’t spend so much time nearly every evening blogging the way I do if I didn’t think so. It’s true that I also enjoy it, but if I were doing this just for enjoyment I’m sure I could manage to find other topics that I could write about. In actuality, way back in deepest darkest beginnings of this blog, I did write about a lot of other things. My skeptical topics were more general in nature, encompassing not just medicine but evolution versus “intelligent design” creationism, religion, Holocaust denial, history, and even the occasional foray into politics. Over time such diversions became rarer, to the point where I hardly ever write about topics other than medicine anymore. I think that the reason for that is simple: It’s what I’m most passionate about, and I think it’s where I can do the most good. Like most bloggers supporting skepticism and, in particular, science-based medicine, I think of myself as doing my part to educate, hopefully in an entertaining fashion, and I’ve been rewarded with one of the more popular medical blogs out there and a small degree of notoriety. Indeed, I sometimes think of myself as a microcelebrity, because I have a little bit of fame, but it doesn’t really extend outside of the blogosphere. That’s fine with me.

It’s often instructive, however, lest I become too smug or comfortable, to take note of how the “other side” thinks of those of us who try to promote SBM and, in doing so, educate the world about quackery. The way we think of ourselves does not resemble in any way what the quacks and antivaccinationists think of us. At some level this is not surprising. After all, any of us who’ve been at this for a while and managed to accumulate enough of an audience to be noticed by the “other side” will be subject to charges that we are “pharma shills,” hopelessly in the pay of big pharma. To the “other side,” obviously that must be why we do what we do, because we can’t possibly be doing this because we’re passionate about our beliefs. It’s such a common (and specious) attack that more than seven years ago I coined a term for it (at least I think I coined the term—I can’t find its use before my first post on it), the “pharma shill gambit.”

However, how we are seen by our opponents goes is much worse than mere allegations of undisclosed conflicts of interest, in which (apparently) nefarious drug companies are paying us to sit at our computers in our underwear turning out attack after attack on antivaccinationists and practitioners of “natural healing.” I was reminded of this recently. Let’s revisit briefly a post I did about Stanislaw Burzynski last week. As you recall, I’ve been very critical of Burzynski on a number of occasions for his peddling of ineffective “antineoplastons,” his promotion of what I have referred to as “personalized gene-targeted cancer therapy for dummies,” his playing fast and loose with human subjects protections in the numerous clinical trials he runs, and his arrogance of ignorance. Basically, I view Burzynski as someone who is incompetent as an oncologist and highly unethical as a researcher charging patients huge sums of money to be in his clinical trials that never seem to end up being published.

So last week I noted that word had appeared around some skeptical blogs that a patient’s family that reported that apparently the FDA is in the process of auditing the Burzynski Clinic, that Burzynski hasn’t been able to use antineoplastons in children for a few months now, and that apparently he’s also been banned from administering antineoplastons to adults as well. I kept the identity of the patient confidential, as did other bloggers writing about the family’s post. However, today I learned that the family has learned about how their post has leaked out. More importantly, I learned how they view those of us trying to report on Burzynski’s activities:

It has come to my attention that there are some uninvited guests following our posts about Alynn. Even with all our progress and good news, anti-Burzynski weirdos find ways to take information I privately post and exploit it as negative criticism. I will be upping the security on our site and removing certain users from allowing access to our account. If I block you by mistake, please take a moment and send me a message. Friends, family, friends of friends.. you should know how to contact me. I will gladly add you back. If I have never met you, and you have good reason to follow our page, even if you are just curious about Burzynski and have come across our story, I will add you back if I can verify your intent is not malicious.

Yes, there are anti-Burzynski groups. Makes no sense to me why these people waste time and want to take away our freedoms. Fortunately, they only have each other and no one really cares about all the effort they put into creating articles and web pages and blabber. I never even heard of such people! I wonder if these cavemen even have iphones yet, I’m surprised they can work the computer. I debated making Alynn’s page public, but I am not into exploiting my child, as these groups are into exploiting children and adults, mainly those who are no longer with us who happen to be patients of the clinic. What I have found in following some facebook pages of kids with terminal illnesses, it seems there are always those people that think they know everything and post really evil, heartless comments. Apparently, I’m not immune to this.

Please do not waste a second of your time trying to avenge are little hero and Dr. Burzynski. It really would do them great satisfaction to know that they rubbed someone the wrong way. Evil people feed off of aggravating others. Bad people have no place in our healing journey.

Yes, that’s right, and it might be jarring to some skeptics. In marked contrast to how I view most believers in pseudoscience such as antivaccinationism or patients pursuing dubious cancer therapies, which is that they are wrong, that they’ve made a horrible mistake, but that I can to some extent understand it on the basis of human nature, believers such as Burzynski patients and their families view us skeptics as downright evil. To some extent, one can understand this. These parents believe that Burzynski is the only hope for their terminally ill relatives to survive. They know they’ve made a decision that their doctors almost certainly tried to talk them out of. Rather than let in a modicum of doubt about that decision, it is easier to view those of us who are trying to combat the misinformation that is used to support his clinic and activities as heartless monsters, as enemies who are actively trying to prevent their children from being cured of cancer. And, yes, that is really, really how they view us.

Don’t believe me? Take a look at what Stanislaw Burzynski’s propagandist Eric Merola is now saying on his website about the “anti-Burzynski” bloggers:

Overall, you need to be able to think for yourself. Question everything, including me and this film. Feel free to verify all sources used for this film for yourself via the Sourced Transcript [link]. You will notice the “anti-Burzynski bloggers” refuse to do that or adhere to reputable sources. You might say, “they are preying on desperate cancer patients and families of cancer patients” by carelessly misleading their readers about Burzynski and his invention. This is a natural course of history when scientific innovation like this occurs, and is something that is to be expected. Never underestimate the irrationality of the human brain when it is confronted with something it doesn’t understand. These bloggers have an agenda, and are not open to rational discourse.

Our society is built on propaganda wars, and wars of information and disinformation. The fact that most people will basically believe anything they are told without bothering to find out if what they are told is true or not—makes them for easy prey, especially when they are dying of cancer. The writers of the “anti-Burzynski” bloggers know this—and take full advantage of this.

Of course, I did just that, going over Merola’s “sourced transcript” over a year ago in my original review of his movie. Be that as it may, notice the message being promoted. “Anti-Burzynski bloggers” are out there to keep you from being cured of cancer! They’re “preying on desperate cancer patients and families of cancer patients”! Why? Who knows? The best Merola can come up with is a variant of the Galileo Gambit, in which we skeptics apparently reflexively resist anything that’s different. In reality, if Burzynski had the goods, he could persuade us, which is why seeing Merola accuse us of “not being open to rational discourse” fried another one of my irony meters.

It’s not just Burzynski fans, either. Antivaccine activists also believe that skeptics and supporters of SBM are out to get them. For instance, last week I also took note of an internecine conflict developing among the crew at the antivaccine crank blog Age of Autism. What interests me now is not so much the conflict itself, given that there haven’t been any new developments of which I’m aware, but some of the comments after one of the posts that brought it all to a boil, which are perhaps epitomized by this one about “ScienceBloggers”:

They really go so out of their way (mounting hate campaigns like “ditchJenny” etc. etc. and this is why I honestly doubt their “Oh we’re not paid shills,” claims. Real, open minded science people wouldn’t be so militant and many scientists/doctors actually disagree with them anyways! Someone mentioned that most of them are either young, impressionable types or older has-beens who get off on bashing others with social media. The more that I think about it, they’re above all, bullies, not pro-science people. I have several friends with MS and it makes me sick as to how they malign anything to do with CCSVI (when MS drugs have killed SOOO many more people than angioplasty ever will) – I believe 3 people have died due to angioplasty- mostly due to having been given stents which they don’t even put in veins anymore. There’s a jerky journalist in our town who actually uses “Science”blogs as his source of information to write on health topics which is really scary (and lazy). It is beyond pathetic that grown up people waste time trying to prop up the status quo in healthcare when it is so obvious that there are serious questions that need to be asked and answered to do with vaccines and questions also to issues of MS cause and treatment.

Yes, as I said before, they really, really hate us. They view us as the enemy, evil people who are actively trying to keep them from healing their children of autism, every bit as much as the parents of Burzynski patients view us as wanting to kill their children by preventing them from being treated by the Savior Burzynski. It is an attitude and view that is actively promoted by Wakefield and his ilk, as well as their supporters, the way Eric Merola tries to whip up paranoia about what he calls “anti-Burzynski bloggers,” and, I suspect, the way that the man who is being reported by commenters to have recently been hired as Burzynski’s new PR man, Wayne Dolcefino, will try to demonize and dismiss Burzynski’s critics. (I don’t have full confirmation yet, but, if it is true and Dolcefino is indeed Burzynski’s new PR flack, one wonders if Burzynski chose him because of his investigative journalism skills, which could facilitate digging dirt on Burzynski’s critics.) To them, we are not just wrong, but we are vile, contemptible, less than human pharma shills. That’s also why, like Burzynski patients, they go into full attack mode whenever there is criticism of their heroes, in particular Andrew Wakefield. These practitioners represent hope, and to attack them is to attack hope. We have to remember that criticism of people like Wakefield or Burzynski only serves drive their worshipers closer.

Now of this, however, is to say that we shouldn’t criticize them. Andrew Wakefield has done great harm, and as a cancer doctor and researcher I simply can’t abide Burzynski’s activities—and rightly so, in my opinion. Certainly, I’ve never pulled any punches. On the other hand, we do have to remember who are targets are and what our goals are. I have no expectation that I will ever be able to convince someone like the parents whom I quoted above. Occasionally, I actually do get through to such people, but it’s so infrequent that I can’t count on it. My goal is instead to put science-based information out there, so that the fence sitters and undecided can encounter it. If the occasional true believer listens, then I’ve done far better than I would ever expect.

In the meantime, I don’t make the mistake of thinking that in return for my efforts I will ever receive anything but hatred and contempt from the “other” side.