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Facebook’s reporting algorithm abused by antivaccinationists to silence pro-science advocates

This is not what I had wanted to write about for my first post of 2014, but unfortunately it’s necessary—so much so, in fact, that I felt the obligation to crosspost both here and on my not-so-super-secret other blog in order to get this information out to as wide a readership as possible.

I’ve always had a bit of a love-hate relationship with Facebook. On the one hand, I like how easily it lets me stay in contact with family and friends across the country, people whom I would rarely see more than once or twice a year, if even that. On the other hand, I have the same privacy concerns that many other people have with respect to putting personal information, as well as pictures and videos of myself, family, and friends, onto Facebook. Now that I’ve become a (sort of) public figure (or, as I like to refer to myself, a micro-celebrity), I’ve thought that I should cull my friends list to just real friends with whom I have a connection (or at least have met in person or had private e-mail exchanges with) and set up a Facebook page for my public persona, to prevent people whom I don’t know or barely know from divebombing my wall with arguments. As I tell people, I don’t want obnoxious arguments on my Facebook wall; that’s what my blogs are for.

My personal social media preferences aside, Facebook does indeed have many shortcomings, but until something else comes along and steals the same cachet (which is already happening as teens flee Facebook to avoid their parents) and even after, Facebook will remain a major player in social media. That’s why its policies matter. They can matter a lot. I was reminded of this about a week ago when Dorit Reiss (who has of late been the new favored target of the antivaccine movement, likely because she is a lawyer and has been very effective thus far in her young online career opposing the antivaccine movement) published a post entitled Abusing the Algorithm: Using Facebook Reporting to Censor Debate. Because I also pay attention to some Facebook groups designed to counter the antivaccine movement I had already heard a little bit about the problem, but Reiss laid it out in stark detail. Basically, the merry band of antivaccinationists at the Australian Vaccination Network (soon to be renamed because its name is so obviously deceptive, given that it is the most prominent antivaccine group in Australia, that the NSW Department of Fair Trading ordered the anti-vaccine group to change its misleading name) has discovered a quirk in the algorithm Facebook uses to process harassment complaints against users and abused that quirk relentlessly to silence its opponents on Facebook.

I’ll let Reiss explain:

Over the weekend of December 21-22, an unknown person or persons used a new tactic, directed mainly at members of the Australian organization “Stop the Australian Vaccination Network” (The Australian Vaccination Network – AVN – is, in spite of its name, an anti-vaccine organization – see also here; SAVN had been very effective in exposing their agenda and mobilizing against them). In an attempt to silence pro-vaccine voices on Facebook, they went back over old posts and reported for harassment any comment that mentioned one person’s name specifically. Under Facebook’s algorithm, apparently, mentioning someone’s name means that if the comment is reported it can be seen as violating community standards. Which is particularly ironic, since many commentators, when replying to questions or comments from an individual, would use that individual’s name out of courtesy.

Several of the people so reported received 12-hours bans. Some of them in succession.

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Posted in: Computers & Internet, Public Health, Vaccines

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Science-based medicine throughout time

As 2013 comes to a close, because this probably will be my last post of 2013 (unless, of course, something comes up that I can’t resist blogging about before my next turn a week from now), I had thought of doing one of those cheesy end-of-year lists related to the topic of science-based medicine. Unfortunately, I couldn’t come up with anything I haven’t already done. I even thought of coming up with a list of New Year’s resolutions for 2014. In fact, I even thought of making the first one—in a self-deprecating manner, of course—to be to stop being so mean, nasty, and dogmatic, the better to satisfy my detractors. But then I remembered that nothing is likely to satisfy my detractors and, besides, my ever-lovin’ cuddliness is what makes me so popular. Besides, I have to be me and gotta be true to myself, and all that rot, so that idea went out the window. Of course, what was worse than my inability to come up with something was that I couldn’t think of a way to make it funny. When you’re trying to be funny following the inimitable Mark Crislip, you’d damned well better be funny. So, until my humorous instincts come back, serious it has to be.

But serious doesn’t necessarily mean heavy. The end of a year is a time both to look back on the year before and look forward to the year to come. This year in many ways was a good year for us here at SBM. We launched a Facebook page, reinvigorated our Twitter feed, and have experienced a significant growth in our traffic. Those who know me and/or follow me on various social media know that I’m a big Doctor Who fan, I have been since the 1980s. So the last two big events of the year, the 50th anniversary special in November and the Christmas special on, well, Christmas got me to thinking about time travel, and thinking about time travel revived memories of a topic I covered on my not-so-super-secret other blog four years ago and had been meaning to treat here sometime. It’s a fun topic to finish out the year, not to mention a way for me to blatantly sneak Doctor Who references into an SBM post.

Being a Doctor Who fan and all, not surprisingly, I’ve often wondered what it would be like to be able to travel through time and visit times and places in history that I’m most interested in. For instance, being a World War II buff, I’d certainly want to be able to check out what everyday life was like here in the U.S. during World War II. Given my affinity for psychedelic music and that I was only four years old during most of the Summer of Love, I’d think it cool to check out Haight-Ashbury, although I suspect my reaction to the reality of it would be similar to that of George Harrison when he checked it out for the first time. I guess, if pushed, I’d have to admit that if I were old enough to have been a high school or college student in 1967, I probably would have been one of those straight-laced, short-haired types destined either to go to college to become a doctor or engineer, or to go to Vietnam to fight. Despite loving the music, I never had any interest in experimenting with the drugs. Beer, wine, and—occasionally—a martini or two are my drugs of choice and then only for medicinal purposes, as they say. Heck, I never even tried to smoke tobacco. Even as a child I couldn’t stand the smell of cigarette smoke to the point where it was never even really a temptation.

In any case, what provoked my original bit of musing was a post a few years ago by Martin Rundkvist, who wrote about Fear of Time Travel, where he imagines what it would be like for a modern person to be transported back in time:

First, imagine that you’re dropped into a foreign city with only the clothes you wear. No wallet, no hand bag, no money, no cell phone, no identification. Pretty scary, huh? But still, most of us would get out of the situation fairly easily. We would find the embassy of our country of origin, or if it were in another city, contact the local police and ask to use their phone. A few days later we would be home.

That’s not the scary scenario I rehearse. Imagine that you’re dropped into the city you live in with only the clothes you wear. No wallet, no hand bag, no money, no cell phone, no identification. And it’s 500 years ago. (Or for you colonial types, 300 years ago in one of your country’s first cities.)

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Posted in: Cancer, Critical Thinking, Science and the Media, Surgical Procedures

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An experiment in paying through the nose for “unnecessary care”

Rats. Harriet stole what was going to be the title of this post! This is going to be something completely different than what I usually write about. Well, maybe not completely different, but different from the vast majority of my posts. As Dr. Snyder noted on Friday, it’s easy to find new woo-filled claims or dangerous, evidence-lacking trends to write about. Heck, I did it just last week, much to the continued consternation of one of our regular readers and commenters. Examining certain other health-related issues from a science-based perspective is more difficult, but I feel obligated to do it from time to time, not just for a change of pace but to stimulate the synapses and educate myself—and, I hope, you as well—about areas outside of my usual expertise.

We spend a lot of time writing about the scientific basis of medicine, clinical trials, what is and isn’t quackery, and how “complementary and alternative medicine” (CAM) subverts the scientific basis of medicine. However, SBM goes far beyond just that. At least I think of it this way. That’s why I’ve looked at issues that go more to the heart of health policy, which should be based on sound science and evidence. That evidence might take different forms than it does for determining, for example, whether Medicaid results in better health outcomes and by how much health insurance does the same. As is the case with policy issues and economics, conclusions are muddled and messy. The error bars are huge, and the number of potential confounders even huger. (more…)

Posted in: Clinical Trials, Politics and Regulation, Public Health

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No, carrying your cell phone in your bra will not cause breast cancer, no matter what Dr. Oz says

I don’t think very highly of Dr. Oz.

Yes, yes, I realize that saying that is akin to saying that water is wet, the sun rises in the east, and that it gets damned cold here in the upper Midwest in December, but there you go. This year, I’ve been mostly avoiding the now un-esteemed Dr. Mehmet Oz, a.k.a. “America’s doctor,” even though his show could, if I paid much attention to it anymore, provide me with copious blogging material, because I’ve come to the conclusion that he is beyond redemption. He’s gone over to the Dark Side and is profiting handsomely from it. There’s little I can do about it except for, from time to time, writing about some of Dr. Oz’s more egregious offenses against medical science and reason, putting our tens of thousands of readers per day against his millions of viewers per day. It’s an asymmetric battle that we don’t have much of a shot at winning. However, at least from time to time I can correct misinformation that Oz promotes, particularly when it impacts my speciality. Consider it doing something pre-emptively to help myself. When one of my patients ask about something that’s been on Oz’s show, I can simply point her to specific blog posts, as I did the last time around when Oz arguably flouted the human subjects protection regulations of his own university and of the Department of Health and Human Services by running in essence a poorly-designed clinical trial to show that green coffee bean extract can promote weight loss. Of course, it showed nothing of the sort.

This time around, Dr. Oz caught my attention about a week and a half ago. I had planned on blogging about it last week, but the case of the Amish girl with cancer whose parents stopped her chemotherapy after less than two full courses, thus endangering her life, intervened. (It also didn’t help that I hadn’t recorded the show and the segment hadn’t shown up on Dr. Oz’s website by Sunday night last week.) I figured that I probably wouldn’t get back to Oz, but—wouldn’t you know it?—a week later I’m still annoyed at this story. So better late than never. (more…)

Posted in: Cancer, Science and the Media

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An update on the case of Sarah Hershberger: Parental rights trump the right of a child with cancer to live

Five weeks ago, when last I touched on the case of Sarah Hershberger, the now 11-year-old Amish girl from Medina County, Ohio near Akron with lymphoblastic lymphoma whose parents had taken her off of chemotherapy after only two rounds, reports had been coming out of the cancer quackery underground that Sarah’s parents, Andy and Anna Hershberger, had fled to avoid a court order that appointed a medical guardian for her to make sure that she received appropriate science-based therapy. At the time I was unable to confirm these stories in the mainstream press. However, over the last month there have been significant developments in this case and even over the last week; so I thought that now would be a good time to update SBM readers on developments in the case.

The Thanksgiving confirmation

One thing that I didn’t mention a month ago is that David Michael and others have been actively raising money to support the Hershbergers’ legal battles. Then, over the long Thanksgiving Day weekend news reports began to trickle out confirming what the “alternative” health sites had been reporting, namely that the Hershbergers had fled. These reports started with story from a local Medina newspaper, then spread to a northeast Ohio television stations, and then to national news sources (like Good Morning America and CNN) and international news outlets. The Medina Gazette first reported:
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Posted in: Cancer, Medical Academia, Medical Ethics, Politics and Regulation

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The Skeptics for the Protection of Cancer Patients need your help

We at SBM don’t normally ask our readers for much, if anything, other than to read and for the subset of you who like to be active in the comments to have at it. However, given the story of Stanislaw Burzysnki, which I’ve been covering with frequent blog posts for over two years now, how could I not listen to the appeal of my friend and co-conspirator (note to Burzysnki fans: that “co-conspirator” bit was sarcasm) to take action in the wake of the USA TODAY story that ran two and a half weeks ago. Despite the disingenuousness of Burzynski’s response, unfortunately he’s still managing to find his way into legitimate scientific meetings.
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Posted in: Cancer, Clinical Trials, Politics and Regulation

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Vaccines work. Period.

Over my blogging “career,” which now stretches back nearly nine years, and my hobby before that of engaging in online “debates” on Usenet newsgroups back before 2004, I developed an interest in the antivaccine movement. Antivaccinationism, “antivax,” or whatever you want to call it, represents a particularly insidious and dangerous form of quackery because it doesn’t just endanger the children whose parents don’t vaccinate them. It also endangers children who are vaccinated, because vaccines are not 100% effective. The best vaccines have effectiveness rates in the 90%-plus range, but that still leaves somewhere up to 10% of children unprotected. Worse, because herd immunity requires in general approximately 90% of the population and above to be vaccinated against a vaccine-preventable disease to put the damper on outbreaks, it doesn’t take much of a degradation of vaccination rates to put a population in danger of outbreaks. That’s why, even though overall vaccine uptake is high in the US, we still see outbreaks, because there are areas with pockets of nonvaccinators and antivaccinationists who drive vaccine uptake down to dangerous levels. We’ve seen this in California and elsewhere. Other countries have observed even more dramatic examples, the most well-known being the way that fear of the MMR vaccine stoked by Andrew Wakefield’s bad science and the fear mongering of the British press led MMR uptake to plummet. The result? Measles came roaring back in the UK and Europe, from having been considered under control in the 1990s to being endemic again by 2008.

As much as I get chastised by concern trolls for saying this, to antivaccinationists it really is all about the vaccines. Always. They blame autism, other neurodevelopmental conditions, and a wide variety of chronic diseases on vaccines, without evidence that there is even a correlation. They even falsely blame sudden infant death syndrome (SIDS) on vaccines, even though there is no evidence of an association and, indeed, existing evidence suggests that vaccines likely have a protective effect against SIDS more than anything else. No matter what happens, no matter what the evidence says, antivaccinationists will always find a way to blame bad things on vaccines, even going so far as to claim at times that shaken baby syndrome is a misdiagnosis for vaccine injury.

One thing, however, that is often forgotten, is that they also do their utmost to downplay the beneficial effects of vaccines. One such tactic is for antivaccinationists to claim that the pertussis vaccine doesn’t work because we are seeing resurgences of pertussis even in the face of high vaccine uptake. For example, another common trope is what I like to refer to as the “vaccines didn’t save us” or the “vaccines don’t work” gambit, in which it is pointed out that the introduction of vaccines doesn’t correlate tightly with drops in mortality from various diseases. Julian Whitaker even used this gambit when he debated Steve Novella. The fundamental flaw in this trope neglects the contribution of better medical care to the survival of more victims of disease, which decreased mortality. If you look at graphs of disease incidence you will see a profound and powerful effect of the introduction of vaccines on specific vaccine-preventable diseases. In other words, vaccines work. (more…)

Posted in: Epidemiology, Public Health, Vaccines

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“Low T”: The triumph of marketing over science

A man on TV is selling me a miracle cure that will keep me young forever. It’s called Androgel…for treating something called Low T, a pharmaceutical company–recognized condition affecting millions of men with low testosterone, previously known as getting older.

The Colbert Report, December 2012

 

And now for something completely different…sort of.

After writing so much about the latest developments in the ongoing saga of the cancer doctor who is not an oncologist and not a legitimate cancer researcher, plus a rumination on what’s up with President Obama’s nominee for Surgeon General and our favorite form of unscientific medicine, so-called complementary and alternative medicine (CAM), also known as “integrative medicine,” I thought it was time for a change of pace. I wasn’t sure what I was going to write about as Sunday rolled around, but fortunately, as sometimes happens, the New York Times dropped a topic right in my lap, so to speak, both figuratively and literally. It comes in the form of a long article on something that directly concerns men of a certain age, which unfortunately happens to mean men of my age and older. I’m referring to what pharmaceutical company advertising campaigns have dubbed “low T,” short for low testosterone. It’s not clear how the term “low T” originated but Dr. Abraham Morgentaler, founder of Men’s Health Boston, claims to have coined the term when his patients were embarrassed by their difficulty pronouncing the word “testosterone.” Other sources report that it was Solvay Pharmaceuticals that coined the phrase. It doesn’t really matter where the term “low T” came from. The term has stuck, even though the more “correct” medical term would be hypogonadism, as in a man’s testes not working.
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Posted in: Clinical Trials, Pharmaceuticals, Science and the Media

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The new Surgeon General nominee and CAM: Is there a problem here?

Our fearless leader, Steve Novella, has informed me that he is traveling today. Unfortunately, I am preparing a talk for later today, and no one else seemed able to come up with a post; so I decided to adapt a recent post from my not-so-super-secret other blog and see what a different readership thought of it. I realize that I’m risking subjecting you all to Gorski overload, but, hey, if the world needs more Mark Crislip, why wouldn’t the world need more David Gorski too? Steve will return next Wednesday, as usual.

I don’t normally give a lot of thought to the Surgeon General because, quite frankly, in recent years it hasn’t been a position of much authority or influence. That’s why I didn’t noticed late last week that President Obama had nominated a new Surgeon General. Normally, my failure to notice isn’t such a big deal, because there really hasn’t been a Surgeon General who has really been particularly well-known or had much of an impact since Dr. C. Everett Koop, although back when President Obama first took office Dr. Sanjay Gupta’s name was floated as a possibility for the position. Obviously, he didn’t get it. (I’m guessing that being a neurosurgeon and CNN’s chief medical correspondent probably pays much better than being Surgeon General.) To be honest, I didn’t even know that the prior Surgeon General had stepped down, but apparently she did in July, leaving the position filled by an interim Surgeon General until a new one could be nominated.

The other day, I learned whom President Obama nominated to be her successor, Dr. Vivek Murthy, a faculty member at the Harvard Medical School:

President Obama will nominate Dr. Vivek Murthy of Harvard Medical School and Brigham and Women’s Hospital as surgeon general of the United States, the White House announced Thursday night.

Murthy is a hospitalist at the Brigham and is co-founder and president of Doctors for America, a Washington, D.C.-based group of 16,000 physicians and medical students that advocates for access to affordable, high quality health care and has been a strong supporter of the Affordable Care Act.

If he’s confirmed by the Senate, Murthy would replace acting surgeon general Boris Lushniak. The surgeon general serves a four-year term and the post is essentially a bully pulpit to speak out on public health issues.

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Posted in: Acupuncture, Politics and Regulation, Public Health, Science and the Media

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The Burzynski Empire strikes back

You might have noticed that I was very pleased last Friday, very pleased indeed. Given the normal subject matter of this blog, in which we face a seemingly-unrelenting infiltration of pseudoscience and quackery into even the most hallowed halls of academic medicine, against which we seem to be fighting a mostly losing battle, having an opportunity to see such an excellent deconstruction of bad science and bad medicine in a large mainstream news outlet like USA TODAY is rare and gratifying. As you might recall, USA TODAY reporter Liz Szabo capped off a months-long investigation of Dr. Stanislaw Burzynski and his Burzynski Clinic with an excellent (and surprisingly long and detailed) report, complete with sidebars explaining why cancer experts don’t think that Burzysnki’s anecdotes are compelling evidence that his treatment, antineoplastons, has significant anticancer activity and a human interest story about patients whom Burzynski took to the cleaners. Most of this, of course, is no news to SBM readers, as I’ve been writing about Dr. Burzynski on a fairly regular basis for over two years now. It’s just amazing to see it all boiled down into three articles and ten short videos in the way that Szabo and USA TODAY did, to be read by millions, instead of the thousands who read this blog. Szabo also found out who the child was who died of hypernatremia due to antineoplastons in June 2012, a death that precipitated the partial clinical hold on Burzynski’s bogus clinical trials, about which both Liz Szabo and I have quoted Burzynski’s own lawyer, Richard Jaffe, from his memoir, first about Burzynski’s “wastebasket” trial, CAN-1:

As far as clinical trials go, it was a joke…it was all an artifice, a vehicle we and the FDA created to legally give the patients Burzynski’s treatment. The FDA wanted all of Burzynski’s patients to be on an IND, so that’s what we did.

And Jaffe’s characterization of the six dozen phase II clinical trials that Burzynski submitted in the late 1990s was this:

A cancer clinic cannot survive on existing patients. It needs a constant flow of new patients. So in addition to getting the CAN-1 trial approved, we had to make sure Burzynski could treat new patients. Mindful that he would likely only get one chance to get them approved, Burzynski personally put together seventy-two protocols to treat every type of cancer the clinic had treated and everything Burzynski wanted to treat in the future…Miracle of miracles, all of Burzynski’s patients were now on FDA-approved clinical trials, and he would be able to treat almost any patient he would want to treat!

I’m just repeating those quotes again, because they can’t be emphasized enough. Quite frankly, if I were Burzynski, I’d fire Jaffe for having published such statements in his book. But that’s just me. In the meantime, let’s take a look at the counterattack and why Burzynski’s excuses regarding the deficiencies found in the FDA reports do not ring true.
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Posted in: Cancer, Clinical Trials, Science and the Media

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