Harassment: The price of defending science-based medicine

There are perils involved in communicating science and medicine, in particular in standing up to pseudoscience, quackery, and the antivaccine movement. I’ve discussed some of them before, most recently when I was targeted with an abusive Michigan Freedom of Information Act request by Gary Null’s lawyer Neal Greenfield a few months ago. (I’ll update that story later in this post.) Before that, there was the time that a “Lyme-literate” doctor sued Jann Bellamy and most of the other editors of this blog for a post he didn’t like. Fortunately, it was dismissed, but not before causing considerable trouble. Then there was the time that Mike Adams published something like 40 libelous posts about me over the course of a few months and claimed to have submitted “complaints” about me to the local FBI office. Before that there was the time antivaxxers, led by a particularly nasty piece of work named Jake Crosby launched a campaign of harassment against me. They flooded my university’s board of governors, my medical school dean, my department chair, and my cancer center director with complaints about a nonexistent “conflict of interest”. Those are just some “highlights”. There are many more examples.

The reason I’m “reminiscing” (if you will) about some of these incidents is because over the weekend, I came across an article on the perils and price of standing up for science by Anna McKie entitled “Is standing up for expertise a fool’s errand?” It turns out, unsurprisingly, that it’s not just those of us who defend vaccines against antivaxxers and medicine against quackery or scientists like Michael Mann, who defends climate science against its deniers, who routinely come under this sort of harassment. It’s any scientist who tries to communicate science to the public that gores the oxen of powerful interests or is the subject of denialist campaigns against it, as vaccine science and climate science are. Harassment is frequently the price we pay for defending science.

McKie starts out with the example of Oliver Bernard, a pharmacist who runs the blog The Pharmafist. He came under attack, oddly enough, for pointing out (as I have on multiple occasions) that high dose vitamin C treatments are not effective.

McKie begins:

“When you want to defend science publicly, you don’t get a lot of support,” concedes the pharmacist and science communicator Olivier Bernard. “Even my colleagues were telling me ‘you are so courageous’ – and I thought: ‘Thank you, but can you do something? That would be more helpful.'”

Bernard had provoked a ferocious backlash from supporters of alternative medicine after he spoke out on his blog against their lobbying of the Quebec government to introduce vitamin C injections as a cancer treatment. His explanation of where popular perceptions about vitamin C differ from what has been scientifically demonstrated – interspersed with humorous cartoons – prompted activists to lobby for him to be fired from his pharmacy job and removed from the professional register. They also tried to get his TV show cancelled and urged supporters not to buy his wife’s book (on an unrelated topic). They even resorted to sending death threats to Bernard and his family.

“When you are passionate about what you do, you try to do good work,” he tells Times Higher Education. “But when you come home and people are threatening you, you do begin to wonder if it’s all worth it.”

Sound familiar? It sure does to me. I don’t have a TV show, but I’ve experienced all of the above sorts of harassment except for someone trying to cancel my TV show or attacks on my wife’s book, mainly because I don’t have a TV show and my wife hasn’t written a book. This part sounds familiar as well, but less so:

A posting on Facebook about the hate campaign he was facing also provoked a big reaction – but this time it came from the science community in his support. The petition to introduce the vitamin C treatment was rejected and the Quebec government has created a task force to protect scientists who speak on sensitive topics, as well as an inter-professional advisory committee to support healthcare professionals who speak publicly.

That’s what was missing, Bernard believes. Referring to the initial silence from colleagues, he says: “I’m not trying to shame them; I understand why they would not want to do it. But having support is key.”

It’s true. Even now, in the age of social media where finally tech companies, the government, scientists, and physicians are waking up to how easily disinformation is weaponized on Facebook, Twitter, Instagram, and now Tik Tok, science communication to the public is nowhere near as valued relative to its importance to society. The number of doctors and scientists who do it is a far too small percentage of doctors and scientists, and the percentage of those doctors and scientists who specifically speak out about misinformation and disinformation is a relatively small. The reason is likely because of what happens to people like Bernard when they do. If you’re effective speaking out against pseudoscience, denial of science, and quackery, you will be targeted, and this is nothing new. What is new is how easily you can be mobbed and driven from the discussion, thanks to social media. What’s newer is that scientists, physicians, and lay advocates for good science and medicine are finally starting to push back as a group, and my perception is that there are more of them than ever active on social media. Unfortunately, we still remain hugely outnumbered, outfinanced, and outgunned.

The first instance of harassment

The following is a story I recount every few years when relevant; so if you’ve heard it before and aren’t interested in hearing it again, feel free to skip this section, although I will mention aspects of this story that I’ve never recounted before. The date was April 2, 2005. Less than five months earlier, I had started my first blog under a pseudonym that many of you know well, a pseudonym that I still use but that is now among the worst-kept secrets in the medical blogosphere or Twitterverse. That day, I received this email from a man named William O’Neill (and, yes, I have kept his emails all these years):

Sir:

You are the owner of the website http://www.oracknows.blogspot.com. Within the website you make reference to my clincal [sic] practice and myself in a manner that is unfactual, libelous and defamatory.

In the event all materials concerning myself, William P. O’Neill, and my clinical practice, the Canadian Cancer Research Group are not removed by the end of business on Monday April 04, 2005, I will initiate action.

Further note, this is a private correspondence. As such distribution, copy or reproduction is by permission only.

Govern yourself accordingly:

William P. O’Neill
CEO Canadian Cancer Research Group
Suite 22
Ottawa, Ontario
Canada
K1S 5K4
1.613.239.0220
[email protected]
[email protected]

c.c. Mr. Joel Taller, LLB Gowlings Ottawa, Ontario.

The weird thing is that this threat was based on a single post in which I linked to a post by Australian skeptic Peter Bowditch, who had frequently criticized the CCRG for promoting cancer quackery. Indeed, Bowditch keeps pages on his website, The GAL Chronicles and The CCRG Correspondence File, dedicated to mocking O’Neill for his email attacks. Let me tell you, perusing these webpages as I wrote this post was a real blast from the past. In brief, Mr. O’Neill formed CCRG in 1998 after he and his wife claimed to have cured their then 12-year-old son Liam of a malignant brain tumor and a recurrence using nonstandard treatments. However, doctors who treated Liam said that the tumor was removed by surgery and the boy received radiation and chemotherapy that cured a subsequent recurrence in the boy’s spine. As Dr. Stephen Barrett (who also received legal threats similar to the one I did) recounted:

In 2001, CCRG’s services cost CN$150/hour for assessment and evaluation (typically $750), $1,500 for “development of therapeutic plan, $10,000 ($5,000 in advance and $500/month for 10 months) for “orthomolecular diagnostic and assays,” and $4,000 per “treatment cycle” for “immunotherapy” (maximum 4 cycles per year). Purchasers were asked to sign a “consent” form agreeing “to not hold liable Canadian Cancer Research Group for act or activity as it relates to the treatment of my cancer.” [5].

For several years, CCRG’s online “interview” form asked whether the prospective client had “general interest” in chemotherapy, radiotherapy, surgery, immunotherapy, vaccine therapy and/or homeopathy and/or “specific interest” in antineoplaston therapy, Livingston therapy, Evers therapy, 714x, Issels’ whole body therapy, Hoxsey therapy, hydrazine sulfate, Revici therapy, tumour vaccines, shark cartilage, Di Bella therapy, Kelly therapy, Laetrile, Gerson therapy, Essiac, Immuno-Augmentative Therapy (IAT), American Biologics therapy, Iscador, Macrobiotics, oxygen therapy, hyperthermia, chelation therapy, DMSO therapy, live-cell therapy, Aboriginal therapies, vitamin therapy, laser resonance, bio-electric therapies, herbal therapy, and Nieper therapy. No method in the “specific interest” list has been proven effective.

Previous versions of CCRG’s Web site have claimed that CCRG “has developed the world’s largest cancer knowledge base, Cancer Canada Net™, fielding over 50,000 inquiries a year, and with an active case load of more than 5,000 international patients.” [1] I seriously doubt that CCRG could have assembled “the largest cancer knowledge base.” Even if O’Neill had managed to compile citations from the major cancer-related databases, the information would not be very useful without interpretation by a qualified cancer specialist. Moreover, these databases can be accessed free-of-charge on the Internet.

In 2006, Canadian Television’s W-FIVE team aired a four-part investigative report that amply demonstrated O’Neill’s dishonesty. One woman, Teresa Bagyan, whose husband Frank had visited CCRG in 2003 after being diagnosed with a brain tumor with a dismal prognosis, told the team that “O’Neill “looked Frank straight in the eye and said ‘I’ve never lost a patient yet.'” She also told the team that O’Neill had also looked at a “before and after” set of MRIs and claimed that the immune system was attacking the tumor and “breaking it up”. After Frank’s death, a radiologist looked at the same MRIs and said that the tumor was still there at the time, with no sign of shrinkage. (That sounds a lot like Dr. Stanislaw Burzynski’s grift.) As part of the investigation, two producers, one of whom was pretending to have stage III lung cancer, visited CCRG with a hidden camera and recorded O’Neill claiming that CCRG’s cure rates were over 80% for lung cancer and 100% for lymphoma, leukemia, and prostate cancer. O’Neill later refused more than half a dozen requests for documentation supporting those claims.

You get the idea.

Ultimately, CCRG was renamed Immune System Management (ISM), a rebranding that was occurring around the time Mr. O’Neill threatened me. Mr. O’Neill ultimately died in 2013, but his son Liam appears to be running ISM now.

In retrospect, I do love the part about not distributing or reproducing O’Neill’s email without permission. Back then, I was so green that I didn’t know that that line is almost always pure unenforceable BS. These days, when I receive emails with legal threats like the one above, I’m fairly likely to post them to Twitter, Facebook, or one of my blogs. But back then, I freaked out, especially since O’Neill CC’ed my department chair, my cancer center director, and my division chief at The Cancer Institute of New Jersey and UMDNJ-Robert Wood Johnson Medical School (since renamed The Rutgers Cancer Institute of New Jersey and the Rutgers Robert Wood Johnson Medical School). I had started the blog under a pseudonym because, if anything, writing a medical blog back then, specifically a blog dedicated to combatting pseudoscience in medicine, was looked on a lot less favorably then than it is now, and, as you’ll see, there is still a sizable segment of medical academia that doesn’t look very favorably on it even now. After receiving the email, I sent late night panicked emails to my bosses explaining what was going on.

Fortunately (I guess), the responses ranged from puzzled to supportive to indifferent. Dr. Stephen Lowry, who was my department chair at the time, was supportive. (Sadly, Dr. Lowry died suddenly of an aortic dissection in 2011, three years after I had moved on from the department. He was an amazing surgeon-scientist and man.) Indeed, at a department meeting later that month he told me that people like O’Neill were bullies, which is true, although when I mentioned that I wanted to hit back by writing about him more he advised me against it. So, even though he was supportive, he wasn’t that supportive. In retrospect, he was probably correct, as Bowditch let me know that O’Neill was all bluster. Hilariously, he even cc’ed me on an email to Mr. Taller asking if he was actually representing O’Neill. Apparently, O’Neill was just adding Mr. Taller’s name to make it appear that he had legal representation.

I laugh at this early attempt at intimidation now, but at the time I was not laughing, and I can see how a newbie trying to get started now at what I was getting started at then might, facing such threats plus online harassment, decide that it’s just not worth it. Since then, as I mentioned above, I’ve received much worse. It seems that, every several months to a couple of years, something happens, most often antivaxxers or cranks trying to harass me at work by complaining to my bosses about imagined misdeeds. Most recently, antivaxxers threatened to come down in their full cosplay gear with their misinformation-packed signs to “protest” against me at my cancer center (see the comments of this Facebook post). No one’s shown up yet, but administration was concerned enough to have me make a report to hospital security. I suspect they won’t show up because even antivaxxers know that disrupting activities at a cancer center and potentially disturbing or interfering with the treatment of cancer patients is not a good look, but who knows? I also note that my cancer center director was totally supportive. He’s come a long way, having gone from being puzzled and (to my perception at the time, at least) seemingly annoyed by such complaints when he first took over ten years ago to being very supportive. He even jokes with me at times, saying that he hasn’t gotten any complaints about me recently, to which I usually joke back with a response something like, “I must be falling down on the job then. I promise do better.”

The harassment climate gets worse

McKie’s article goes on to recount a list of scientists targeted for harassment, including:

  • Climate scientists whose emails were hacked at the University of East Anglia. The hackers used the emails to paint a false picture that climate science had been manipulated and that scientists had tried to silence critics.
  • Naomi Oreskes, professor of history of science and affiliated professor of Earth and planetary sciences at Harvard University and co-author of Merchants of Doubt: How a Handful of Scientists Obscured the Truth on Issues from Tobacco Smoke to Global Warming. She recently recounted how since 2004 she’s been attacked for defending the scientific consensus regarding climate change.
  • Hero Saharjo, professor of forest protection at IPB University in Indonesia. He is an expert on the forest fires that regularly sweep through Indonesia, started by palm oil companies that want to clear land cheaply and quickly. He noted that during four months in 2015, such fires released more carbon dioxide than the entire European Union, and through his studies, has “traced those who started those fires and has testified in hundreds of cases against the companies responsible”. He and his family have faced intimidation and he’s had little support among his colleagues, many of whom are funded by the palm oil companies.
  • Simon Wessely, professor of psychological medicine at the Institute of Psychiatry, Psychology and Neuroscience at King’s College London. An expert in chronic fatigue syndrome who’s shown that two approaches, graded exercise therapy and cognitive behaviour therapy, can help CFS patients manage their symptoms, he’s been falsely attacked by patient groups for not treating CFS as a serious illness. In one instance, a conference slide of his was altered to reverse the meaning.
  • Sameer Jauhar, a senior research fellow in the department of psychological medicine at King’s College London. According to McKie: “After speaking on BBC Radio 4 about the dangers of overstating the withdrawal symptoms from antidepressant drugs, ‘people on Twitter accused me of not caring about patients, saying I was frying people’s brains’, he says.”
  • Edzard Ernst, emeritus professor of complementary medicine at the University of Exeter. We’ve long admired Prof. Ernst for his work against alternative medicine pseudoscience, and for standing up to the many attacks, including attacks by the powerful, such as Prince Charles.
  • Riko Muranaka, a Japanese scientist at Kyoto University. She was “She was threatened, sued and accused of being in the pay of the pharmaceutical industry after she wrote an article claiming that a mouse study revealing a link between the [HPV] vaccine and brain damage was fabricated.”
  • David Nutt, Edmond J. Safra professor of neuropsychopharmacology at Imperial College London. He was fired as chair of the UK Home Office’s Advisory Council on the Misuse of Drugs for saying that “alcohol and tobacco were more harmful than LSD, ecstasy or cannabis.”
  • Linda Bauld, the Bruce and John Usher professor of public health at the University of Edinburgh. She’s been hounded by Big Tobacco for her work exposing the dangers of tobacco and more recently accused of being in the pocket of Big Tobacco for her work suggesting that e-cigarettes are less harmful than cigarettes. She’s suffered online trolling and anonymous threatening phone calls, while activists are “digging into Bauld’s life and work, she says: ‘They find meetings I’ve attended to see if someone from the tobacco industry was there so they can say I am biased’.”

Reading McKie’s article, I see some things getting worse. For instance, the online harassment is definitely getting worse, from my perspective. I suspect the reason is that it’s so much easier to harass someone on social media now, and denialists are so much better organized than they were back in 2005, when I suffered my first brush with such tactics. Think about it. Back then, Twitter (founded in 2006) and Instagram (founded in 2010) didn’t yet exist; Facebook was still limited to college students at Ivy League universities and nearly a year and a half away from being made available to everybody. The only venues for online harassment and the organization of campaigns of online harassment were, essentially, email, blogs, and Usenet, and Usenet was fast dying, thanks to the rise of web-based discussion groups. Twitter, in particular, can be a real cesspit, particularly if you’re a woman or person of color, so that the online attacks you face can have misogyny, threats of sexual violence, and racism added to posts like this:

Typical harassment on Twitter: Death threats.

You might recognize that name. He’s commented here and on my other blog in the past.

Similarly, the rise of social media has made it much easier for denialists to organize harassment campaigns. There are secret Facebook groups (and ones that aren’t secret) where members plot things like protesting at my cancer center. Back in 2010, when my university was the target of campaign by antivaccine activists, I knew that the campaign had largely been organized by email. Today, it would have been organized on Facebook, in one of the many antivaccine groups that still exist even after Facebook’s crackdown on antivaccine misinformation, where thousands more people could be reached.

Moreover, if you work for a private company, do you think your bosses will be supportive if the online mob targets you for harassment at work? I’m fortunate in that I work in academia. The culture here is very much more resistant to online mobs like this than private industry. If you work for a private company and are targeted, there’s a high likelihood that your bosses will tell you to shut up or be fired, not because they aren’t sympathetic but because they don’t want to be bothered, they don’t want the company’s reputation to suffer, and they don’t want controversy involving the company. There’s even a little of that in academia, but freedom of academic expression is so strongly ingrained in the culture of universities that it usually wins out, bringing at least grudging support from administration and in my case (usually) enthusiastic support.

There is, of course, one drawback if you work for a public university. It’s one I’ve discovered before, namely that you might be subject to Public Record Act/Freedom of Information Act (FOIA) requests. It’s a tactic antivaxxers are using increasingly. I’ve been targeted by Gary Null, and Dorit Reiss has been targeted by Del Bigtree. In fact, I’ll launch a preemptive strike here against Null and tell you what was sent to him. Amusingly, Null will get a couple of crank emails sent to Steve Novella and me at our university addresses. (That’s what he gets for asking for any emails mentioning Steve Novella.) He’ll also get an email chain among several provaccine activists discussing the proposed Connecticut law to eliminate religious exemptions to school vaccine mandates. My prediction is that one email in particular will be publicized by Gary Null, in which I wrote:

This is why I find religious exemptions for vaccine mandates so problematic. They unjustifiably privilege one form of personal belief over another just because…religion. There is no meaningful distinction between religion and other personal beliefs, any of which can easily be rendered bulletproof for purposes of these laws by claiming a religious basis.

A couple of those on the email exchange agreed. Of course, what I meant was that exemptions based on religion only are inherently unfair because they discriminate against nonbelievers and unfairly privilege religious belief over other deeply held ideological/spiritual beliefs, which is why I’ve always believed that if you’re going to allow religious exemptions you have to allow personal belief exemptions and that if you’re going to get rid of personal belief exemptions to be fair you have to get rid of religious exemptions as well. It’s both or neither. Of course, I also believe that it’s also much better to get rid of both religious and personal belief exemptions when politically feasible and allow only medical exemptions. Gary Null is very much into labeling anyone who questions his quackery as “atheists” (as if being an atheist were a bad thing!); so I fully expect he’ll try to make a stink about my statement, proclaiming it as evidence that I’m an evil atheist targeting “deeply held religious beliefs”. If you see him do that, feel free to refer him to this post.

The harassment climate improves

It’s not all bad news. In many ways, as McKie recounts, physicians, scientists, and academics are more supportive now when colleagues come under attack. There’s even a prize, the John Maddox Prize, awarded by Nature and Sense About Science every year to individuals who promote science and evidence in the face of hostility. Bambang Hero Saharjo is the recipient of this year’s award. Several others mentioned above have also won the award, including Edzard Ernst, Riko Muranaka, and Olivier Bernard, who won this year’s early career Maddox Prize. I’ll let you in on a secret. I’ve been nominated on at least a couple of occasions. (Thanks to those who nominated me.) Looking at the winners, I realize that I probably haven’t faced the level of high-power hostility that those who actually won have. Personally, I like to think that campaigns against me over the years have led several of my bosses to appreciate the importance of standing up for science as academics, leading to more enthusiastic support. (It also doesn’t hurt that the online cranks who launch these campaigns are often so…cranky. They make it obvious what they’re about.)

Other areas in which the climate has improved include efforts by Google and social media giants like Facebook to rein in the spread of misinformation about medicine, at least. Doctors and those who support science-based medicine have finally woken up and started to organize to help those who are targeted by quacks and antivaccine cranks. The most prominent example is Shots Heard, which exists mainly to counter the swarms of antivaccine activists who will infest the Facebook pages of doctors who promote vaccination and publish fake negative reviews about them on Yelp! and Vitals.com. Such efforts are still fairly embryonic and small, however. Supporters of SBM remain outnumbered, outgunned, and outfunded, but things are getting better.

Except for one thing.

The final challenge to science communication

There is one last major impediment to the growth of science communication to the point where the battle against pseudoscience doesn’t seem so hopeless. There remains a prevalent attitude out there among some academics, at least one of them quite prominent, that countering quacks and antivaxxers is so easy that it’s not worth our time as physicians. One major example with whom I tussled on Twitter is someone whom I like to call a Very Eminent Rising Star in Oncology (VERSO)—mainly, because he is just that—Vinay Prasad, MD, MPH.

Back in October, he started Tweeting about how criticizing Goop’s selling of jade eggs and other pseudoscience was like “dunking on a 7′ hoop” and how skeptics should put the hoop back up to 10′ by—of course—joining him in taking on clinical trial shenanigans by big pharma. He even went so far as to suggest that I give up my usual topics for six months and spend those six months doing what he does because what he does is so much harder and more worthwhile. He appears to have since deleted many of the most obnoxious of the Tweets in which he made fun of skeptics who spend time deconstructing quackery and pseudoscience, implying that such activity is so easy as to be unworthy of our efforts and that what he does, analyze clinical trials, is so much more difficult. Of course, there’s considerable overlap in skillsets, given that we frequently have to go deep into the weeds of clinical trials of, say, acupuncture or homeopathy to demonstrate why they do not show what advocates think. When this was pointed out to him, even more obnoxiously, he took it as confirmation that we think that what he does is of more value because we were arguing that we do do the same sorts of analyses of clinical trials that he does. Be that as it may, I tried to search Twitter for the most offensive posts, and it seems that he’s deleted many, perhaps all, of them.

Here’s a remaining example someone took a screenshot of:

In context, he was clearly referring to me (the “fellowship trained” bit). The “soft targets” bit is a claim that he repeated several times. It’s one I’ve dealt with before elsewhere.

Basically, Dr. Prasad raised criticisms of our efforts as though he were the first to think of them and was very dismissive, thinking his efforts far more difficult and worthy than ours. In any event, I don’t want to go into detail about the whole kerfuffle. I’m merely using it as an example of how dismissive some physicians, particularly academic physicians, are of science communication efforts targeted at quackery. I liked Mark Hoofnagle’s comments, though:

That was basically my attitude, too. Maybe I should go back and analyze Dr. Prasad’s podcast on the issue, but I fear it might raise my blood pressure too much. The point is simply how dismissive some doctors are of science communication efforts targeting pseudoscience, even as they “dunk” on a clinical trial based on…a treatment from alternative medicine:

Is that the eminent Dr. Prasad addressing a claim based on an alternative medicine therapy?[/caption]

The point is that, yes, things have gotten better in that many more physicians and scientists are communicating science and pushing back against pseudoscience than there were when I really got started 15 years ago. Also, it should be a big tent, with room for doctors like Dr. Prasad and their critiques against pharma and doctors like us at SBM. We should be natural allies, as is the case with Ben Goldacre, who takes on both pharma and alternative medicine. To me, that’s the hardest nut to crack. Until we manage it, until we can persuade doctors like Dr. Prasad that we’re natural allies and that combatting pseudoscience is not only difficult but a worthwhile activity for an academic, we’re going to be held back in what we can do. Doctors like him don’t have to do the dirty work of pushing back against quackery themselves if they don’t want to. Division of labor is a good thing. All I ask is that they stop making our job harder.

As for everyone else, doctors, scientists, and interested lay people, we welcome you. I just wanted you to know what you could be in for if you join is, so that you go in eyes open. Only you can decide if helping to educate the public and counter disinformation is worth it to you.