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The price of opposing medical pseudoscience

EDITOR’S NOTE: This post is a followup to a post from two weeks ago entitled In which Dr. Gorski once again finds himself a target of the “pharma shill” gambit. If you haven’t read that post before, you might want to go back and read it now before proceeding with this post. Please also note the disclaimer.

I want to beg your indulgence this week, hoping that my history as a blogger here on SBM and then as managing editor allows me that. Today’s post will be a little different because last week was really, really, hectic. First and foremost, I was busy writing a preapplication for a Susan J. Komen Foundation grant for a deadline of last Friday. The Komen Foundation, it turns out, has changed its procedures this year so that the preapplication is now evaluated much more rigorously. It’s no longer looked at just to make sure that the proposed project matches the subject matter and criteria for the request for applications (RFA). This year, the preapplication actually matters! Moreover, it’s so long that writing it is practically like writing the entire grant, other than the budget. But I got it done, and it looks pretty good, if I do say so myself. None of that is any guarantee that Komen will invite us to submit a full application, but I’m hopeful because if it does we should have a good shot at the grant.

Then, this weekend I had to pivot on a dime and return to writing the R01 I had been working on with my collaborator. To make the July resubmission deadline, it has to be done, in the can, and submitted by this Friday. In any case, these are the reasons why this post is likely to be uncharacteristically personal in nature.

Oh, those reasons plus a little bit of character assassination launched at me on Monday by Jake Crosby over at the Age of Autism, entitled David Gorski’s Financial Pharma Ties: What He Didn’t Tell You.

So ridiculous were Jake’s charges that I’m not going to bother rebutting them in detail. That is not my purpose, given that I’ve already taken them on preemptively. After all, when Jake first wrote me asking me about my “conflicts of interest” (COIs), I saw what was coming and decided that the best defense is a good offense. That’s why two weeks ago I wrote a rather detailed rebuttal to what I expected to be coming. In my usual inimitable fashion, I entitled my post In which Dr. Gorski once again finds himself a target of the “pharma shill” gambit, because, well, that’s exactly what I saw coming from Jake, a pharma shill-style attack. He didn’t disappoint, although nothing in his post actually shows that I have a COI, nor does it refute anything I wrote in my preemptive rebuttal. Boy, oh, boy, though, did Jake try to make the proverbial mountain out of a molehill! Actually, scratch that. It’s a bad metaphor. Molehills actually exist, in marked contrast to Jake’s imaginary COI.

Jake also provided a new twist so bizarre that I must admit that I hadn’t expected it, if only because it revealed such a shocking ignorance of how science and academia works — nay, how the world works — that I would never have even thought of it. It never would have occurred to me in a million years. Basically, Jake’s argument was that because my university has received grants from Sanofi-Aventis and because I work on receptor in breast cancer that I view as a promising molecular target for therapy that can be targeted with a drug made by Sanofi-Aventis that I’m testing in a small pilot clinical trial, that all means that I’m hopelessly compromised. Why? Because apparently, by Jake’s logic, part of my salary and/or lab startup expenses must be coming from big pharma, so I’m actually a pharma shill who’s hiding his pharma shill nature from the public when I blog. Yes, it’s utter nonsense, and I would point out that by the same reasoning if, for example, J.B. Handley’s investment company handles any pharmaceutical company accounts, then J.B. Handley must be a pharma shill, too, because he would also getting his paycheck from a company that receives money from pharmaceutical companies. Indeed, Jake’s research and reasoning were so sloppy that a professional journalist with whom I correspond expressed utter amazement at Jake’s writings and commented that, if Jake keeps it up, some day he will be sued for libel by someone. I wouldn’t be surprised to see that happen, although I’ll assure Jake right here that it won’t be by me, at least not over this attack. I simply have better things to do, particularly now, given the multiple grants I’m writing and the fact that next weekend I’m going to have to pivot again and finish up my talk for the Science-Based Medicine workshop at TAM8.

As I’ve written before, I’ve been the subject of online attacks on and off for my activities here and under a pseudonym elsewhere. Before I was “outed” multiple times, people would sometimes ask why I blogged under a pseudonym elsewhere. Does anyone need to ask anymore? What happened as a result of Jake’s post should limn very starkly the reasons why many skeptic and supporters of science-based medicine decide to blog pseudonymously or anonymously, and I feel that you, SBM readers, deserve to know what happened. If in describing what happened, I manage to send a friendly little rejoinder to our ideological opponents at AoA, well, far be it from me to pass up such an opportunity

Online attacks against me are nothing new, of course; I’ve even linked to a whole bunch of them in my profile. In fact, they began nearly a decade ago, four solid years before I ever even started my first blog. Those were the days before I became interested in quackery, but I was interested in Holocaust history and active on Usenet in refuting Holocaust denial. As a reward for my efforts countering online denial on Usenet, a Holocaust denier impersonating a man named Kenneth McVay, who has maintained a website dedicated to refuting Holocaust denial (The Nizkor Project) since the 1990s, circulated a list on multiple Usenet newsgroups under the subject header Visit/call them! The NIZKOOK List! In other contexts the list later became known among neo-Nazis and Holocaust deniers as the “Nizkor/NAMBLA list.” The anonymous neo-Nazi Holocaust deniers posting this risible list represented it as a list of what it claimed were members of Nizkor who were also members of NAMBLA, and, among many tireless fighters of online Holocaust denial who were also on the list.

Yes, the first online defamation campaign against me came from Holocaust deniers trying to smear me as a pedophile. Lovely. Obviously I was appalled. Still, in a moment of gallows humor, I must admit that one particularly hilarious aspect of the list was that it had a listing for me at two different addresses, one in Chicago and one in New Jersey. Apparently I had a really long commute to work. The explanation, of course, was that at the time the list first surfaced I been at my first academic job (which happened to be in New Jersey) about a year, after having finished a fellowship at the University of Chicago. Fortunately for me, the Holocaust denier circulating the list was too clueless to have figured out that I didn’t live in Chicago anymore. He also got the wrong David Gorski in Chicago and apparently had no idea that I’ve never had any association with Nizkor, although I did and do have an association with The Holocaust History Project.

I suppose I should have taken it as a mark of honor that my efforts against Holocaust deniers were successful to be smeared as a pedophile by neo-Nazis and Holocaust deniers, but somehow I didn’t see it that way at the time.

There were no online attacks after that for years, although I remained active on Usenet. Then I started my first blog in late 2004. In April 2005, a certain Canadian by the name of William P. O’Neill of the Canadian Cancer Research Group first discovered my identity and sent e-mails threatening to sue me because I had linked to some of Australian skeptic Peter Bowditch’s posts, apparently because O’Neill really, really hates Bowditch. Fortunately, my then department chair, division chief, and cancer center director recognized O’Neill immediately for the crank he is. From then on out, whenever a new O’Neill threat arrived, I would politely respond with an offer to put him in touch with my lawyer, cc’ing my response, of course, to my aforementioned department chair, division chief, and cancer center director. To some extent it was a bluff, because back then I didn’t actually have a lawyer, but if O’Neill ever took me up on it I had no doubt that I could find one. Over the five years since then, I’ve had anti-vaccine activists take periodic shots at me, HIV/AIDS denialists trying to get me into “debates,” and the odd crank or quack express extreme unhappiness with me. Last year, I even had someone who read an attack on me by J.B. Handley posted to AoA write to my cancer center director. I suppose I should be grateful that no one dug up the old neo-Nazi pedophile smear, although I have no doubt that they will at some point.

The response of AoA commenters after Jake’s post about me took the attacks to another level, far beyond the mere poisoning my Google reputation that certain bloggers excel at. In the comments, a commenter by the ‘nym of MAKE AUTISM STOP posted my work address and e-mail addresses. Then a commenter going by the ‘nym sos posted a link to the contact information for the board of directors of my university. MAKE AUTISM STOP then made it even more explicit by posting a list of their e-mail addresses, the implication clearly being that anti-vaccine activists were launching a campaign to try to get me fired. This got to the point where a commenter by the name of Craig Willoughby, someone who detests me enough to have dedicated a fair number of posts on his blog to attacking me, complained:

Come on, guys. I despise Dorkski as much as the rest of you, but is it necessary to post information about his place of employment? I know he’s a megalomoniacal douche-bag, but calling his place of work to try to get him fired is petty, people. That’s bringing yourselves down to his level.

Craig even made it clearer on his own blog.

Of course, I’ve never tried to get anyone fired for blogging or posting anti-vaccine screeds or even for not having their children vaccinated, nor encouraged anyone to do so. But I’ll let that pass. At least Craig realizes that there was no rational justification for writing and calling the board of directors of my university. Despite his extreme dislike — hatred, even — for me, he recognized a line and knew when “his side” was crossing it. That is very much to his credit. What were the responses to Craig’s reasonable complaint? Lots of disagreement and rants about how I need to be taken down by “any means necessary.” A commenter named Julie made this explicit:

Yes Craig, it is necessary. By any means necessary.

The cancer scam and the autism scam. The more I read the more I see the similarities. If there is a silver lining to my son’s illness it is that both he and I are DONE with mainstream medicine.

They come up with a drug, then try to find a disease for it? Hello? And they call homeopathy witchcraft?

Actually, I call homeopathy sympathetic magic, which is what its concepts appear to be based on. But enough of examples of the level of vitriol directed at me. I may be harsh in my assessment of the pseudoscience behind the anti-vaccine movement and the “autism biomed” quackery movement, but if there’s one thing I try never to do: Attack parents who have been frightened of vaccines by the anti-vaccine movement. What I do do is to criticize the leaders of the anti-vaccine movement, using science and medicine to back up my criticisms. Be that as it may, what SBM readers are probably most interested in knowing is what the fallout of this campaign was.

Fortunately, not much bad and quite a bit more quite good.

Don’t get me wrong. I’d be lying if I said that when I started finding out about these e-mails to the board of directors at my university I wasn’t disturbed and quite concerned. After all, the vaccine wars are not widely known among academics, and the issues involved can appear puzzling to an outsider unfamiliar with them. I had no way of knowing how the administration would react to an e-mail campaign orchestrated by commenters on AoA. Many of these people are easily identified as cranks, but others are not, at least not to people unfamiliar with the issues involved, and I had no way of knowing whether the university or my cancer center would shut down my blogging activity. As the campaign continued, other bloggers offered to try to get their readers to write e-mails of support. With gratitude I accepted their offers, although also with uncertainty. I honestly didn’t know whether such e-mails would make the situation better or worse.

So when I got a phone call from one of my bosses asking me just what the heck was going on, I admit that there was quite a bit of trepidation involved as I explained the situation. Fortunately, all the administration seemed to be concerned with was whether I actually had an undisclosed COI. Was I being funded by Sanofi-Aventis and not disclosing it? When I showed the administration definitive evidence in the form of my grants and the clinical trial protocol that I’m running demonstrating conclusively that I do not receive one red cent from Sanofi-Aventis for my research — or anything else for that matter — the questions disappeared, and the administration pivoted from information gathering mode to support mode, reassuring me that I have its support on the basis of free speech and academic freedom.

In the end, the only bad things that happened to me were the agita that I suffered after learning of the e-mail campaign and the time I wasted having to gather the information necessary to show my administration that there was nothing of substance to Jake’s charges. This latter problem was not entirely minor, either, given that I was in the midst of trying to get together the Komen preapplication that I mentioned at the beginning of this post. Far outweighing the bad was the good, though. For example, I learned that Wayne State University and the Barbara Ann Karmanos Cancer Institute are even better places to work as an academic physician than I had appreciated before this campaign began. I also learned that the administration of the Wayne State University School of Medicine was actually concerned about my safety, which implied to me that the level of vitriol in some of the e-mails must have been intense indeed, making me wonder if I should be concerned. Fortunately, given that no one ever actually threatened me during this campaign, either by phone, e-mail, or letter, I doubt I have definite reason to be worried. At least not this time. But I do wonder. Be that as it may, what I do know now is that the campaign against me backfired spectacularly, and that is a very good thing indeed.

I also learned a little bit about the price for standing up for science-based medicine. Prior to last week, it hadn’t been brought home with quite such drama. Now it has. Yes, I had suffered the slings and arrows of online criticism and the odd e-mail to my bosses over the last five years, but nothing, for example, to compare with the death threats and frivolous lawsuits endured by Paul Offit, the misogynistic attacks launched against Amy Wallace, attempts by quacks to silence various bloggers such as Andy Lewis, or the frivolous subpoena targeting Kathleen Seidel. Even so and even with the attempt to get me fired from my job, I don’t feel right putting myself into quite the same category as other skeptics who have suffered repercussions for their activities. After all, what are three days of agita and worry about my job compared to Simon Singh’s being placed in danger of bankruptcy and ruin by the the British Chiropractic Association’s lawsuit against him, Paul Offit’s having to endure death threats and threats against his family, or what animal researchers Edythe London or Dario Ringach had to endure at the hands of animal rights zealots?

But I think I understand at least a little bit better now.

Unfortunately, I’m under no illusion that this sort of thing won’t happen again some day, probably when I least expect it or am least prepared, like this time. Failing to win on science, evidence, or reason, lashing out against their critics in manners like this is all that the forces of anti-science can seemingly do. I also don’t blame Jake himself quite so much for the attempts to get me fired as I do adults commenting on his post who really should know better and who, ironically enough, for all the complaints about my using a pseudonym elsewhere, post under pseudonyms or their first names themselves. I only hope that Jake figures out just how misguided and wrong he’s been before the time comes for him to look for a job and join the world as a productive member of society. Youth only works as an excuse for such behavior for so long, and, besides, Jake may have inadvertently done me a great favor. I didn’t know how my administration would react if the anti-vaccine movement made a run at me. Now I do, and I know that there isn’t a problem. It may have been a bit embarrassing, but that embarrassment was transient, a price I now see as worth paying for freedom from fear.

In the meantime, I soldier on, shorn of any illusion of online invincibility but comforted by the new knowledge that I have support where I would not previously have counted on support and also realizing that the support of my administration will no doubt be viewed by the orchestrators of the campaign against me as “evidence” that they were right all along and that my university is protecting me because of my value to pharma.

Posted in: Medical Academia, Neuroscience/Mental Health, Vaccines

Leave a Comment (83) ↓

83 thoughts on “The price of opposing medical pseudoscience

  1. squirrelelite says:

    I’m glad to hear you’re still standing.

    It sounds like Wayne State is a very good school indeed!

    Good luck with your grant applications.

  2. Ian says:

    The whole idea of trying to get you fired via email writing seems a bit self-contradictory. Why wouldn’t your university be part of the great pharma conspiracy? I don’t follow the logic.

    Maybe it’s not there to follow. :)

  3. kongstad says:

    You are doing a fantastic job dr. Gorski, both here and on that other blog.

    It would be sad indeed if something this silly in content, if not in consequences , would have an effect on you professional life.

    I am glad you have the support of you employers, and you should know your voice is heard and appreciated.

    /Soren

  4. Sullivan says:

    The Age of Autism blog moderates comments quite actively. The “editors” there are active in the comment end of the discussion. They could easily have stopped this attack. Instead it appears to have their approval.

    What is amazing is that they believed Mr. Crosby’s piece was convincing evidence of a COI.

    I don’t know why I am amazed at that. They also buy into the idea that autism is mercury poisoning, ghat British doctors can perform invasive procedures on disabled children without clinical need or ethical approval and that it’s OK to relabel an untested drug as a supplement in order to avoid testing it.

  5. mxh says:

    Thanks for sharing Dr. Gorski. It’s nice to know that your institution is supportive… there are a lot of anti-scientific theories being promoted by medical departments (especially at medical schools) and I’d be worried that at other places you might not have gotten the same support.

    I’m sorry that you had to waste your time with this.

  6. Todd W. says:

    Great to hear that Wayne State’s got your back, Dr. Gorski. Thanks for sharing your experience. It is a good example for everyone that takes on nonsense, especially where emotions run high.

    @Sullivan

    I wrote before over at my blog about how AoA is rather selective in applying their commenting guidelines. I also wrote up a bit on Crosby’s article, addressing some of the comments that actually made it through moderation, as well as touching on how philanthropy works in regard to corporate giving to academic institutions.

  7. Dawn says:

    Hi, Dr Gorski. I’m thrilled to read that Wayne State University used its brains and asked you to tell them what’s going on, reviewed the evidence, and went to support a fine physician and researcher. I hope that your Komen grant and CO1 grants go as well!

  8. Recovering Cam User says:

    Thanks for the detailed report on the events following Jake’s post. It’s good to start the week with such a definitive victory for free speech and rationality.

    Thanks again for all you do.

  9. superdave says:

    At this point it’s almost when and not if concerning AoA and a libel accusation.

    Did Wayne State release any statements over this that we can view?

  10. Kylara says:

    I serve on the board of a very small public institution, and I can tell you that e-mail/phone/letter campaigns like this are largely viewed with annoyance and are rarely taken seriously, ESPECIALLY when they involve a personnel-type issue. Unless the person has direct factual knowledge of the situation at hand, their input is rarely even on point, which makes the fact that they’re attempting to sway us with a massive quantity of public contact that either isn’t relevant to the topic OR that’s factually incorrect MADDENING. You often have to at least acknowledge all of it. And you can lose an entire day of your life answering phone calls. And they’re all on the same script.

    On questions where there is an issue of public opinion, I don’t mind it at all, even when it’s tedious. But issues like this — your board probably wants to kick AoA in the face and probably feels a lot of sympathy for you right now, Dr. Gorski.

    We’ve been dealing with a couple situations like this lately; one where an employee has been making blatantly non-factual statements (to the effect that the board has chosen to fire him, rather than that the union contract stipulates in what order we’re required to release employees in his employee group when doing RIFs) and I’ve been getting DOZENS of calls demanding to know why we’re “targeting” this employee. Not only will this not result in saving his job, but it obviously raises huge questions about his integrity — not just for us, but for his supporters to whom we explain the reality of the contract, many of whom he’s probably alienated. Another situation where an employee was caught red-handed in wrongdoing and is trying to save his job by having dozens of people call us and defend his general awesomeness as a person. Maddening. Which I suppose is to say my advice, if you’re going to contact public officials or boards, is to be sure of your facts before jumping in with an opinion, and that when it comes to personnel, which usually can’t be discussed publicly, unless you have direct personal knowledge your input is probably off the point, useless, or even undermining your desired point. As the AoA people in this case — their complaints are off the point and undermining their desired point. They’ve strengthened, rather than weakened, Dr. Gorski’s position.

  11. Molly, NYC says:

    I’m not the first person to notice this, but not only is the right column of the A-of-A website filled with ad after ad of boogitty-boogitty autism products, but such products, services and events are shilled in the blog itself. (1)

    A-of-A is not some misguided charitable endeavor. Olmstead et al. are total ‘hos for whatever claptrap anyone pays them (or apparently, BlogAds pays them) to pitch to desperate parents.

    This six-degrees-of-Kevin-Bacon funding association crapola is partly projection, but mostly an attack on A-of-A’s worst nightmare–someone who threatens their ca-ching, ca-ching. Of course they want people to harass you at work (while keeping their own hands clean, of course).

    Dirtbags.
    ____
    (1) If you were in Phoenix on Saturday, you could have met Andrew Wakefield–for the low, low price of $20, $35 for couples. Cash bar. Or there’s The Autism Cookbook–dairy- and gluten-free, since that is so clearly an autistic kid’s problem ($17.95).

  12. Jonathan says:

    I as well have thought that AoA possesses far more investment in seeing certian conclusions reached than pharma companies – even if some or all of those aleged conspiracies existed.

  13. Jann Bellamy says:

    Jake Crosby’s Buttery Spread Ties: What He Didn’t Tell You

    Jake Crosby, a writer for Age of Autism, is a student at Brandeis University, according to his AoA posts. On its website, “Brandeis University has announced a multi-year $1 million sponsored research agreement with Smart Balance, Inc. through its wholly owned subsidiary, the maker of Smart Balance® buttery spread and other low-fat and fat-free foods that help lower cholesterol through a patented blend of natural vegetable oils.” http://www.brandeis.edu/otl/news/index.html. This and other Smart Balance products substitute vegetable fats for animal fats, such as those found in butter, which is made from the milk of dairy cows. http://www.smartbalance.com/products/buttery-spreads. AoA promotes “The Autism Cookbook,” by Susan Delaine (also a reiki practitioner) which advocates a DAIRY-FREE DIET! http://www.ageofautism.com/; http://www.susandelaine.com/Meet_Susan.htm.

    Need I say more?

  14. Ken Hamer says:

    I wish I could read some of these absurdist websites, but almost immediately upon viewing them I feel myself getting stupider by the second. I figure actually reading them would be a serious threat to my mental health. And ability.

  15. David Gorski says:

    Jann, that’s hilarious! By Jake’s own logic, it must be true, too.

  16. Science Mom says:

    Kudos to your university Dr. Gorski and to you for your tireless efforts to expose the pseudoscience that is, unfortunately, so pervasive in our society. This bold and ethical move by your administrators should serve as an example to other institutions.

    It also serves to illuminate the delusions of grandeur that contributors and commentors from anti-vax sites labour under. Their contributions are nothing more than internet fappery that they have mistaken for influence.

  17. Todd W. says:

    @Jann Bellamy

    Nicely done. Much better than the one I found. I was focusing on philanthropic contributions from pharmaceutical companies and, in my limited searching, all I was able to find was a donation from Bristol-Myers Squibb.

  18. SkepticalLawyer says:

    Add me to the list of people who are glad to see that your employer is supportive of your blogging.

    I’m very glad to see that they were concerned for your personal safety. I work for a court, and get some vaguely threatening letters and calls sometimes (some of them related to my old job). The folks in charge of security take all of them very seriously, and encourage me to tell them about any communication that even inches towards a threat.

    I don’t want to scare you, Dr. Gorski, but you never know who might snap mentally and pose a danger. It’s better to be overly cautious than unconcerned.

  19. daedalus2u says:

    The response of those at AoA is not unexpected. It is exactly predictable from how they perceive the world and is the root cause of why there can be no bridges between science and pseudoscience (referring to your other post today).

    There is a fundamental difference in how scientists perceive reality. Scientists build their perception of reality from the bottom up, from ground facts tied together with logic. That results in a coherent information structure that is reliable, where things can be tested and understanding changed to accommodate new information to make a good information structure even better.

    The people at AoA don’t understand reality that way. They actually don’t understand anything. What they are doing is noticing that they feel a certain way, and then making stuff up to justify how they are feeling. The feelings come first and the justification comes later. I have a whole blog post on how this relates to xenophobia, it is similar in other cases where the feelings have no basis in reality.

    http://daedalus2u.blogspot.com/2010/03/physiology-behind-xenophobia.html

    This is the essence of “cherry picking”. You have a feeling (idea xyz is correct), then you go looking for “facts” (or make them up) to justify the feeling rather than look at facts first and then come up with the feeling.

    I use the example of Antisemitism and the Blood Libel against the Jews. Many Antisemites think that the reason they hate Jews is because Jews use the blood of Christians to make matzo. That is not correct. No observant Jew has ever used the blood of any Christian to ever make any matzo. Blood is never kosher, human blood can never be kosher. Because the story of Jews using human blood for such things is false, it cannot be the reason for anything. The only reason there is such a story is because someone made it up. Someone made it up with no basis in fact.

    Similarly because Dr Gorski is not a pharma shill, his being a pharma shill cannot be the reason for any action he has taken. The idea that Dr Gorski is a pharma shill is a made-up idea so that the AoA can justify their hatred of him. They like the idea because it makes their world view seem coherent (in their bizarro world).

    The need to justify their feelings is more important than having their “facts” actually correspond with reality. Facts don’t matter.

  20. Mark Crislip says:

    Jann. Please post that at AoA.

  21. Watcher says:

    Wait, dude goes to Brandeis?! Wonder if he has a local wateringhole …

  22. Todd W. says:

    @Mark and Jann

    I second Dr. Crislip’s suggestion. And, if it does not make it through, feel free to copy it over at Silenced by Age of Autism, as well.

  23. superdave says:

    @daedalus2u
    That was one of your best posts. But you ca take it a step further, it’s not just the pharma shill thing that isn’t true, the entire foundation of the website, that vaccines cause autism, isn’t true.

    My first posts on this issue was to point out just how evil the caricature of people like Dr. Gorski must be in the eyes of the anti vax crowd. They believe in their hearts that Gorski and everyone else knowingly withholds or distorts information hat injures children. What could be more vile an accusation to someone who has taken the hippocratic oath. A few years later they had their infamous baby eater post, which confirmed my feelings beyond my wildest dreams. And to this distortion is neccasery to perpetuate their delusions.

    The reaction to Jake Crosby’s piece is sadly the logical outcome of their thinking. Believing Gorski to be a real life Lex Luthor, this kind of letter writing campaign really HAD to occur. There is no way for these people to act otherwise once they truly believe Gorski to be so villainous. This is the scary part. Once you cross into that slipperly slope, it become almost logical for these people to act by any means needed. I am glad Craig Willoughby had the sense to actually speak against this.

  24. daedalus2u says:

    superdave, that is exactly how xenophobia works and exactly what its “purpose” is. It is exactly to demonize individuals so much that they are fundamentally non-human and so do not deserve human rights, including the right to be not killed indiscriminately.

    That is the fundamental objective of all top-down power hierarchies, the people at the bottom become non-persons and so can be removed from the hierarchy and killed.

    That is the fundamental dilemma curebies face. They are unable to perceive their autistic children as fully human, so they don’t treat them as they would human children. In an earlier time children who could not be perceived as human were called changelings and were believed to be the offspring of non-human fairies, made to be physically identical to the human child that was stolen. Such children were abused and/or killed. Same as how curebie parents treat their autistic children today; pumping them full of industrial chelators, subjecting them to chemical castration and so on, anything consistent with the meme better dead than autistic. The better dead than autistic meme comes from xenophobia.

    We now know that there are no fairies that can steal children and substitute an identical looking changeling. We know that there were no fairies doing such things in times past. Those children who were perceived to be changeling children and were then abused and killed were not changelings at all. They were probably autistic. The language the curebies use today is similar to the language of times past; “autism has stolen their child”. No, your child is still present, you are simply unable to perceive your child as fully human and so you reject it as non-human. The fault lies in the perception, not in the child. Good thing we have Children’s Protective Services to protect children from the abuse of parents unable to perceive them as human.

  25. vexorian says:

    I was honestly never able to get any comment at AoA approved at all. Anyway so in hoping that the guys at there will eventually read the comments at here I will have to post… I don’t really get this, are they mad because Gorski is working on battling breast cancer? I don’t really get these guys…

    Anyway, posted by “Not an MD”:

    Very disturbing reading. Check out this link to the drug study:

    http://www.druglib.com/trial/03/NCT00251303.html

    Can you believe that only six children were recruited for Phase 1 of the trial for Riluzole? They call that science? The nerve of these charlatans!

    I was wondering if he realized it was phase 1 of the trial, but then I noticed he actually wrote phase 1 in his own post. I don’t get these fellows, so for phase one of trials they would prefer to test the drug on millions not knowing what danger could there be, I don’t think that sounds like a good idea. I guess they could just call Riluzole a supplement and then conduct no testing at all…

    I don’t get why this guys like the money fallacy that much considering how AoA is full of people with monetary conflicts of interests:

    Thank you Jake! As owner of one of the alternative practices from Autism One’s recent conference who was panned by corporate name (in any other world, that would be tantamount to slander), by Mr. Gorski in his blog, I’m finding this very helpful in my own defense. Amazing how one man’s conflict of interest is another man’s pure-as-the-driven-snow lack of knowledge of an off label usage. Right. I believe him. But then, I’m a “magician” not a clinician, per his blog.

    Thanks for a well written expository piece.

    Cindy Griffin
    Homeopathy Center of Houston

    This is one of the people that get direct profit from the promotion of alternative medicine and the slander on ‘traditional’ medicine. It is amazing how AoA commenters fail to realize that the money trail fallacy works both ways. They are eager to bash anyone with links to big pharma yet at the same time they blindly follow these alt med guys that WILL make a good profit.

    I just hope that the guys so eagerly buying the AoA conspiracy theories and pseudo-science would read these comments and begin looking up for themselves for the true conflicts of interests among the people behind AoA, just taking a look at the side bar ads is a good start…

  26. David Gorski says:

    Cindy is hilarious in that she apparently doesn’t know the difference between slander and libel, nor does she understand that expressing an opinion is not libelous, particularly since I can point out evidence linking concepts of sympathetic magic to homeopathy. She may not like my opinion, but it is not libelous or slanderous.

    Hmmm. That might be a topic for another post, using Cindy’s unhappy comment as the lead-in.

  27. TsuDhoNimh says:

    (1) If you were in Phoenix on Saturday, you could have met Andrew Wakefield–for the low, low price of $20

    Dang, I would have gone, had I known.

  28. pmoran says:

    Reacting to several comments–

    Analysing “alternative” supporters is a popular skeptical pastime, but is it as ad hominem as anything that they dish up? Explaining opposing opinion away, as the product of some variety of pathological reasoning, enables us to escape the less interesting and sometimes much tougher chore of having to yet again challenge underlying perceptions.

    There are other bonuses from it: a sense of intellectual superiority, reassurance as to the validity of our own beliefs, and let’s not forget applause from the rest of the choir.

    That’s a lot of pleasures –enough to make a scientist suspicious of the practice?

    There is a downside. Many of those we might wish to influence are not crackpots. They will be as justifiably resentful of being talked down to and being “explained away” as we are whenever accused of acting in bad faith and not from personal conviction.

    PS I still think poor Jake and HIS choir warranted the most perfunctory of possible responses, before a pointed, concise, sympathetic recap of why we REALLY don’t think vaccines cause autism, ideally displaying some understanding of the perceptions that lead others to think differently.

    We can’t do a lot with those who seriously believe that we are involved in a massive global conspiracy ( as opposed to those for whom this is an on-and-off “half-belief of convenience” or a mere debating ploy) but we can try and inform others.

  29. pmoran says:

    I should acknowledge that excellent informative material on all vaccine issues is present on this blog. But it is not easily available to anyone looking for the critical data or any casual visitor.

    If you doubt me, try this simple search and see what you would have to sift through —- “vaccines and autism”.

  30. David Gorski says:

    Let’s put it another way for the sake of illustrating a point and see if Peter agrees.

    Analyzing supporters of science-based medicine, as well as scientists and skeptics in general, is a popular pastime among people who think they know how to communicate better than scientists and skeptics, but is it as ad hominem as anything that denialists, be they antivaxers, supporters of alternative medicine, or what have you dish up? Explaining opposing strategies for combatting pseudoscience away as ineffective because they are the product of some variety of pathological personality traits enables us to escape the less fuzzy, more confrontational, and sometimes tougher chore of having to yet again challenge supporters of dangerous pseudoscience directly over their misinformation.

    There are other bonuses from it: a sense of moral superiority, of knowing that they are so much more “civil” and “reasonable” than those more “militant” supporters of science, reassurance as to the validity of their own beliefs, and let’s not forget applause from those who think like them.

    That’s a lot of pleasures –enough to make a scientist suspicious of the practice?

    There is a downside. Some of those we’re dealing with actually are crackpots and those who are not are no more likely to be convinced by facts and science. They will look no more favorably at us for politely holding their hands and telling them that they are wrong than they do when told bluntly that their beliefs are based on pseudoscience and logical fallacies.

    See? Two can play that game.

    As for trying to inform “others” that is the very purpose of refuting Jake’s pile of slime at length. You don’t really think I’m trying to convince most of Jake’s “choir,” do you?

  31. Chris says:

    pmoran, wouldn’t it be easier to click on the SBM Topic Based Reference Menu bar, which would get you a link to:
    http://sciencebasedmedicine.org/reference/vaccines-and-autism/

    (okay, it is two clinks)

  32. rtcontracting says:

    Some of the people who leave comments at Age of Autism are really scary.

    Someone who goes by the username Benedetta just commented on Jake’s article:

    I made a list on the way to the emergency room last night after my daughter had a seizure ( long history of vaccine reactions by all three of my family members) the list was of people I have met over the years that I wished killed. Trouble is to get the real deep satisfication from it- I would have to bring them back to life to kill ‘em again.

    How is it that comments like this get through, but most comments critical to their viewpoint get censored?

    I really appreciate the work that high profile skeptics do (like Dr. Gorski); their fight isn’t without some risk (both professional and physical).

    Thank You.

  33. David Gorski says:

    @Chris

    I know. Peter clearly isn’t looking very hard if he couldn’t find that. It’s also a hell of a lot of work to put together these topic-based references, which is why we only have a couple of them done.

    In any case, what Peter seems to be wanting is a Wiki or some sort of comprehensive reference, not a blog. That’s not the same thing as a blog. Of course, what keeps people coming back is the daily dose of fresh material. If we were to stop that, our traffic would plummet faster than BP’s share price, and we don’t have enough people to do both right now.

  34. overshoot says:

    In any case, what Peter seems to be wanting is a Wiki or some sort of comprehensive reference, not a blog. That’s not the same thing as a blog. Of course, what keeps people coming back is the daily dose of fresh material. If we were to stop that, our traffic would plummet faster than BP’s share price, and we don’t have enough people to do both right now.

    Yes and no. It’s possible to have vast amounts of reference material meticulously organized and indexed, along with fresh material updated frequently (as in, this morning’s decision in Bilski reported and analyzed within minutes of it hitting the Supreme Court website). Pamela Jones of Groklaw does it. Then again, she’s pretty much one of a kind and even she has volunteer help. The SBM bloggers are in a profession which is notorious already for sucking unhealthy amounts of time. Medicine, blogging, editing, and a life?

    Have mercy!

  35. David Gorski says:

    You’ve made my very point. Such an endeavor requires far more personnel and time than we have. It’s hard enough making sure there are new posts several times a week. I’m sorry if Peter doesn’t like our mission and strategic choices, but, quite frankly, his criticisms come off as criticizing a weekly magazine for not being an encyclopedia.

  36. pmoran – chris – regarding searching for vaccine – autism.

    Sorry to sound critical, but my graphic design and ecommerce past tells me, the search engine on SBM really is sad. For one thing it does not highlight the words that you searched, you just get what appears to be a bunch of random articles that you are supposed to trust may eventually have something to do with your search. Compare a search here to one on google or http://www.bartleby.com

    To get to Chris’ suggestion you have to know to scroll down well past the “fold” and look for a vaguely titled link, “SBM topic based reference”. How would I know that is going to take me to a topic called “vaccines and autism”? Really, a science based blog should not depend on someone being psychic to find information. :)

    This is not to single out SBM, sad search engines are pretty common for blogs and I would guess that it is representative of the functionality that wordpress offers (this is wordpress, right?) But, a good consult with a information designer and a bit of work with a web developer would do the site a world of good.

    I know, if wishes were horses.

  37. Also, compliments to Wayne State. It sounds like they handled the situation well.

  38. David Gorski says:

    I’ll actually agree that the WordPress search engine stinks. However, I’ve also used Google on my other blog, and it’s even worse from my perspective. It picks up the search terms in all the comments, too, which is truly annoying, as well as having no apparent rhyme or reason to the order in which articles pop up after searches. Personally, when I need to find an old article, I use the search engine in the back end of that blog, which is Movable Type. If anyone knows of a good WordPress plugin for a search engine, certainly we’d be willing to consider it.

    I don’t know the solution to this, but I’ve yet to find a search engine for a blog that I’m happy with.

  39. Dr Gorski – “It picks up the search terms in all the comments, too, which is truly annoying, as well as having no apparent rhyme or reason to the order in which articles pop up after searches.”

    Yup, that doesn’t sound any better. I could see how it would be worse.

    Sorry for being obnoxious*, but I think the “SBM Topic-Based Reference” link is hiding a light under a bushel in it’s current location, low on the page under the “STAFF” subhead. There seems to be a good amount of useful content there.

    I don’t know how much of a pain this would be in WordPress, but maybe someday someone could add a drop down menu navigation toward the top of the right columns, maybe under your search box or above the “CATEGORIES” header. This could be used as compact navigation to all the topics in “SBM Topic-Based Reference”.

    This would be one way to get all that reference content up where a viewer is more likely to find it without taking up alot of space. Also, it would give the reader a visual prompt that the content they will reach through the drop down is different from the content that they reach through the “CATEGORIES” links.

    Also, the title is sort of…huh? What’s that mean? to me. Although I appreciate the difficulty. Perhaps “Guides”, “SBM Guides” or “What You Need to Know About…” would be more intuitive.

    But, of course your blog and all, don’t mind me if that sounds off base or is a pain is the neck.

    *Don’t you love it when someone apologies for what they are going to do, then goes ahead and does it anyway?

  40. @micheleinmichigan, er, “low on the page under the STAFF subhead”? Did you miss that the topic-based reference is also one of the tabs in the navbar at the top of the page?

    @anyyoneelsewhocares, the resource pages here are a respectable work in progress, imperfect but noteworthy. I have a painfully good idea what it takes to create such resources, and find it to be a minor miracle that SBM contributors have been able to create as much as they have. If y’all want better, donate $10K! (But not if you’re Big Pharma, of course. That would look bad.)

    Congratulations on discovering that you have the support of your employer, Dr. Gorski. Day in and day out we see signs that world is mostly mad, that down is up and black is white, but here is a lovely and reassuring example of how things occasionally work out the way rational people would like to see them work out. Yay!

  41. phog says:

    This is my first post. I couldn’t help but point out that when I went to the Age of Autism web site, that the main ad was for Lee Silsby Compounding Pharmacy. Doesn’t this make them Pharma Shills?

  42. pmoran says:

    David, I reject your attempt at tu quoque. It is surely no mere debating ploy to suggest that we do not subject our own opinions, atitudes and evidence to the same critical scrutiny that we apply to that of “alternative” supporters. It would be unnatural, even superhuman if we always did, and never slipped into lazy modes of argument.

    The analyses I was drawing attention to (not in this instance, yours) have the same limited generalisability as alt.med characterisations of conventional medicine.

    My theme in this and other recent posts is that they can generate a lot of words that could be better aimed at the critical factual evidence, especially that relevant to core alt.med perceptions.

  43. Matt Roman says:

    How’s this conflict of interest: Jake Crosby has an ASD.

    His life goal seems to be to prove that something environmental caused his Asperger’s syndrome. Shame he didn’t go into science to figure out the truth, and instead is caught in a mess without the skeptical thinking tools needed to flesh out the good from the bad….

  44. pmoran, I’m going to go with Rosemary on this one. (Based on her contributions to other threads.) What is your scientific evidence that the communication approach you advocate would be more effective than the current SBM blog? Until you can produce it, all you’re going to get is an exchange of “I’m right, you’re wrong” and “No, I’m right, you’re wrong.” (Based on her contributions other threads, Rosemary shares your concerns but is aware that without evidence her concerns are opinion based on anecdote.)

    Further, I’m under the impression that one of the audiences that SBM is hoping to reach is journalists.* Because of needs to appear objective and lively, journalists often fall into a “false balance” approach to reporting. SBM models an alternative objective and lively approach to presenting facts. If it encourages professional journalists to investigate their own alternatives to false balance most appropriate for their own medium and target audience, that can only be a good thing.

    * Synonym for impression: “guess.” Bloggers here in the past have vigorously contested some of my previous guesses, so they obviously aren’t worth much.

  45. David Gorski says:

    @pmoran

    See? An understanding of logical fallacies comes in handy. :-)

    My intentional use of the tu quoque was done with a point in mind. Think about it. If you didn’t know what a tu quoque was, you would have had to waste a paragraph explaining what it was.

    In this case, tu quoque is not always fallacious, at least not when done with a specific purpose in mind, this time that point being that your sarcastic remarks and questions demonstrate quite clearly that you assume that I have not thought about the issues at play. No, no, don’t deny it; it’s clear from your “gotcha” questions that you do. And, yes, your questions were definitely sarcastic and borderline insulting. Tsk, tsk, that’s not very “nice” at all, not very respectful, to imply using loaded questions that I do what I do here on SBM primarily out of a desire to achieve the “applause” of the “choir” and because I want to assert my “intellectual superiority,” while also suggesting that I’m arrogant. Clearly, you are not above cutting sarcasm when it suits your purpose. Well done, sir!

    Obviously I don’t expect you necessarily to know this, but I have written extensively about the topic of communicating science and medicine to the public on my other blog, dating back at least to 2007 and expending quite a bit of verbiage. My thought on the matter has even evolved considerably since then, although for purposes of our disagreement unfortunately (to you no doubt) away from your way of thinking. In fact, I wrote about this very issue just yesterday. Honestly, you’re not the first person with whom I’ve argued this issue, and, depending upon the year in which the discussions happened, I’ve argued both sides of the issue and am quite familiar with the arguments on both sides.

    Unfortunately, that’s why I can say that I have yet to see much evidence that you subject your opinion on the best way to communicate science to the public to anywhere near the degree of critical thinking that you subject mine. You clearly simply assume that your way is better and assert so without backing your assertion with evidence, as Alison pointed out. Until you produce such evidence, we’re talking anecdote versus anecdote. Moreover, you seem to fall into the trap of assuming a “one size fits all” approach, when, as the cliche goes, there are more than one way to skin a cat.

    Sometimes the pot is justified in calling the kettle black.

  46. Regarding navigation – Yes I completely missed the link (SBM – topic based reference) at the very top of the page. Maybe that’s just me or maybe it’s still hidden due to the title and it’s placement in a top nav that doesn’t have other high usage links. I find I concentrate in the area of the “RECENT POSTS”, “RECENT COMMENTS” AND “CATEGORIES” for navigation.

    A small user test or focus group is useful when you don’t know how well viewers are using your navigation, but I doubt any of the blogger’s here have the time for that.

    Now, it’s past time for me to stop obsessing about someone else’s navigation.

  47. Matt Roman

    His life goal seems to be to prove that something environmental caused his Asperger’s syndrome. Shame he didn’t go into science to figure out the truth, and instead is caught in a mess without the skeptical thinking tools needed to flesh out the good from the bad….

    But is that a genuine COI? If it were, then no one with ASD could work in research on ASD, without a COI consideration, because one could say their life goal is to prove (inset goal here) about ASD. This relies on one’s subjective interpretation of another person’s life goal.

    That said, when reading science, I do consider if the researcher may be overly committed to their concept.

    But, I think I prefer my COI to be more concrete. Show me the money.

  48. BillyJoe says:

    I couldn’t imagine anything worse than if everyone was just perfectly nice, polite, and well-behaved all the times regardless of the situation. What a completely boring world that would be. Please, let’s not blend everyone into an amorphous nothingness.

    Australia has it’s Peter Bowditch. America has it’s Or…um…David Gorski. Internationally we have Richard Dawkins and Christopher Hitchens. Do we really want these characters to disappear? Of course not. Well, then, put away the gelding knives, please.

  49. tmac57 says:

    “What happened as a result of Jake’s post should limn very starkly…”
    Hmmmm, “limn”…where have I seen THAT word before? Of course! It was the New York Times crossword puzzle! And what other words have I seen in the NYT?: Autism,vaccine and cause!!!
    I don’t think that we have to look any further than that!!!

  50. I did not read pmoran’s original comment to be a criticism of Dr. Gorski’s article – this time. He specifically say he was reacting to comments and references analyzing supporters of alternative medicine.

    I do not find it harmful to occasionally point out that this blog is read by many people not necessarily in the know about various internet cultures like AoA.

    For instance Daedulus2 talks about “curebies” in a derogatory way, yet there are many parents of low functioning autistic children who would genuinely like to have a cure for their child’s difficult sypmtoms AND also love their children deeply and act accordingly to protect their child and in their child’s best interest.

    I don’t read it as such, but without the background in the unscrupulous and sometimes dangerous activities of some of these AoA pratictioners, how does one those regular caring parents know that Daedulus2 is not including them in the “curebies” definition?

    I think it doesn’t hurt to be aware of the broader audience when commenting, so as not to unintentionally offend. It’s always better to intentionally offend. IMO that is.

  51. David Gorski says:

    I think it doesn’t hurt to be aware of the broader audience when commenting, so as not to unintentionally offend. It’s always better to intentionally offend. IMO that is.

    Heh. I agree. I may also have to steal your quote sometime.

    You may be right about Peter’s first comment, although I would argue only partially so, as it’s fairly clear that it was at least in significant part directed at me as well; so I responded. As for his second comment, that obviously was completely directed at me.

  52. Sullivan says:

    There are other bonuses from it: a sense of intellectual superiority, reassurance as to the validity of our own beliefs, and let’s not forget applause from the rest of the choir.

    I find that whenever anyone tries to tell me the reasons for why I blog (or do anything, for that matter), they are invariably wrong. No one ever analyzes motivation when they are not being critical of the blogger. Make of that whatever you may.

    I don’t know why Dr. Gorski blogs or why he picks his topics. I don’t care. I don’t know why Jake Crosby blogs. I don’t care. What I do care about is that Dr. Gorski takes positions that are defensible and defended by facts. People like Jake Crosby and his colleagues at the Age of Autism blog often take positions which are not defensible.

  53. jimroche says:

    I am a small time practitioner, working in a little office offering services like speech and behaviour therapy to children with autism. I also have a blog and on several occasions linked to SBM. I get especially upset with local naturopaths offering homeopathy, diets (DAN “doctors”) and chelation treatments for children. We even have a few chiropractors here offering autism treatment. My few posts have not received any comments I can leave, but like you I have been threatened. 3 am calls where I am referred to in horrible ways and told I’ll be silenced. Some from Europe. Weird, bothersome, and sometimes scary. The people are just the tip of the iceberg, they are part of what I call the “cult of stupidity” and can’t take ANY criticism. ANY. Their attacks are always personal, and regretfully often threatening. Besides my PhD I have a JD and WAS a minister (M Div). I went to theological seminary. And times have changed. When I went to seminary they taught us how to think critically, not dial a phone and threaten to kill people we disagree with. I am afraid it’s getting worse.

  54. Dr. Gorski “Heh. I agree. I may also have to steal your quote sometime.”

    Can’t take credit, pretty sure I was just channeling Oscar Wilde, “A gentleman is one who never hurts anyone’s feelings unintentionally.”

  55. daedalus2u says:

    In the sense I am using “curebie”, I consider it to be those who are trying to “cure” autism and is analogous to those who try to “cure” being black, being Native American, being female or being gay. It is trying to “cure” someone by changing them so that they no longer trigger xenophobia for you, so that there presence no longer makes you feel uncomfortable. The problem isn’t with the person who triggers xenophobia, the problem is in the person feeling xenophobia.

    I am not saying that xenophobia is not a valid feeling. It is a valid feeling, but it is about the person feeling it, not about the person who triggers xenophobic feelings. Acting on xenophobia is unacceptable. It is Jake acting on his feelings of xenophobia toward Dr Gorski that led Jake to make up this nonsense about a conflict of interest.

    The problem is that many people who are neurotypically developed are unable to perceive individuals with autism without having xenophobia being triggered. It is very much like homophobic individuals wanting to “cure” gay people, and if that doesn’t work, to kill them. That is where the “better dead than autistic” meme comes from.

    I don’t consider my comments and labeling people as “curebies” to be ad hominem. I am not dismising their ideas because they are “curebies”, I am calling them curebies because it is an accurate term to characterize their belief system. A curebie’s idea of “cure” is for someone with autism to disappear and a neurotypical person to appear in their place.

    It is not ad hominem to analyze their motivations and thinking processes. I am attempting to understand and explain how they arrived at their conclusions via a chain of thinking that doesn’t simply impute evil and dishonest motives to them (their standard operating procedure). There is a chain of mental processes that lead them to their conclusions even as they think they are doing the right thing and not something evil. My comments were directed at explaining the motives and the thinking processes of those who have made up lies about Dr Gorski and then proceeded to publicize and act on those lies as if they were truth. Unless the motives and thinking processes of the parties involved can be understood, effective communication is not possible.

    The mechanism I outlined, where false ideas are made up to justify feelings is consistent with the data. The alternative, that the false ideas came first is not. If the false ideas came first, before feelings of antipathy toward Dr Gorski, there would be no motivation for the false ideas to be skewed in the worse possible way. If there was another explanation of why they hate Dr Gorski so much, I would like to hear it, so far I have heard none that make any sense.

    I am not saying that every anti-vaxer has a visceral hatred of everyone who is pro-vaccine, but many of them do. Those that do hate vaccine proponents so much that they want to kill them multiple times did not arrive at that hatred through a rational analysis of the facts of the situation. Either they made up the lies to justify their feelings, or they believed the lies someone else made up to justify their feelings.

    It is difficult to have a dialog with someone who hates you so much that they want to kill you multiple times. Someone who hates you so much they are willing to state that you are so evil that you would kill and eat human infants. I don’t know how to do it. I can’t do it. Maybe someone else can.

  56. overshoot says:

    I really don’t have a good name for the feeling I get watching Dr. Moran and Dr. Gorski going back and forth here — a thread based on “pharma shill” accusations. It’s deliciously ironic considering that both have a long history of being the subject of “pharma shill” accusations on the never-ending vaccine front.

    Which, in case anyone missed the first three episodes, long predates Andrew Wakefield. In fact, the diligent can hunt down John Scudamore’s post from the mid-90s on MKH announcing the pending litigation that would once and for all end the sham of vaccination — and which it turned out much later was the one that employed Wakefield and indirectly started the current high-profile noise.

  57. daedulus2 – I did not suggest ad hominem. I’m suggesting that there is a distinction between these two.

    Parent 1 – who is willing to try dangerous, unlikely and unproven medical procedures on their child in the hopes of completely eradicating a very poorly understood diagnoses based on a principle of “better dead than autistic”.

    Parent 2 (a neighbor of mine)- who has a fifteen year old child who she loves with severe autism and seizures (which seem to increase some of his symptoms of autism) and would consider it a dream come true if her son could live safely, happily and independently when he is an adult. She pursues educational programs provided by the country, speech therapy, special education and neurological care for the seizures.

    I had assumed that we agreed there IS a distinction between the two. But now I wonder if I was wrong. That by your criteria they are both curebies, doing basically the same thing as sending their gay son in to be re-programmed?

    But I am confused, perhaps I’m getting lost in the analogies you are pursuing in the circumstances with Dr. Gorski and the AoA blogger.

    I am not completely unfamiliar with the idea of NeuroDiversity. To me it seems parallel to the cochlear implant and communication models controversy in the Deaf and HOH community. Another controversy where I find myself feeling sympathetic to both sides.

  58. pmoran says:

    I know full well that I must look like a disruptive attention-seeker, but I have travelled a long way in these matters, too, David.

    Do you want to know what sets me off? It’s related to something I have mentioned before. We scientists are normally so cautious, so tentative in our judgments, even on simple questions such as “what does this drug do?”.

    Yet when confronted with anything to do with alternative medicine and the practice of medicine generally the very complexity of some of the subject matter seems to transform us into know-it-alls. Opinions and rank over-generalisations are presented as ex cathedra pronouncements, seemingly becoming gospel for a compliant, rarely questioning, congratulatory faithful on the usual forums.

    Some of that is inevitable, I suppose, in such informal writings, and I take that into account. The problem is that highly arguable pronouncements can be accompanied by an incongruous element of smugness and self-congratulation (to my eyes — I admit I may be oversensitive, for reasons outlined below), and even a hint of sneering at less privileged folk who may have genuine concerns and needs that have just been trampled all over.

    I suggest that despite the advances of science we don’t know as much as we think, either about the functioning of medicine in all its aspects, or about the role that alternative medicine may play in some lives ( not at all in the way that most alt supporters think –but that is another story).

    The use of “we” in the above reflects the fact that I have been as guilty as anyone of the exact same hubris. I hope that admission helps blunt any offence I am causing. It is also why I feel I have a special duty to speak up.

    It was only after I caught myself in a serious recurring inconsistency that I began to examine other standard skeptical assumptions more closely and found that a lot of them are not well supported by hard fact. They may be close to truth but not the whole truth, just as some alt.med “truths” have a core of fact. I especially realised the overriding importance of CONTEXT to any understanding of medicine and how it serves mankind.

    I have also deliberately immersed myself in alt.med culture and I can tell you that any alt.medder and even many uncommitted people will be sensitive to and repelled by some of matters that I and others have raised. That is about as close to fact as you can get, I am afraid, yet such views are typically not taken very seriously by writers and commenters on this blog. Although, I notice that there is now less name-calling, such as use of the word “altie”. That is a step in a good direction.

    If this blog’s emphasis on CAM does not imply that it is expected to be read by “alternative” supporters and those sympathetic to, or curious about, CAM, what is it for?

    And how well have present approaches been working for us, really? Are there no grounds for reexamination of how we present the case for science, and what that case actually is?

    I know your blog has won awards, David, and I myself have been full of praise for some of your writings.

  59. pmoran says:

    By “CONTEXT” I mean the clinical setting, i.e. who is being treated for what, if that was not clear.

  60. Harriet Hall says:

    I, for one, would like to thank pmoran for his participation. He is a wise, experienced clinician who has long battled on the front lines of medicine. He is a gadfly who helps keep us honest, and he makes some excellent points. It is all too easy to preach to the choir and get to thinking we are wiser and “righter” than we really are. (I speak for myself and am not criticizing other bloggers). I really appreciate his contributions to our discussions; he has made me think harder about a number of things.

  61. Anne B says:

    One hopes and expects that the people who receive crank emails will see them for what they are, but it’s not guaranteed, even if it seems so glaringly obvious. I suppose that Jake Crosby can now rest assured that an investigation has been done and that there is in fact no COI.

    deadalus2u, regarding differing perceptions of reality, this was discussed in a recent Vaccine Court case where Dr. Andrew Moulden’s expert opinion was rejected as patently unreliable. The special master said, essentially, that what he was doing wasn’t science, it was ideology. I blogged about it here:
    http://pertinent-inquiry.blogspot.com/2010/06/andrew-moulden-and-his-junk-science-in.html

  62. sheldon101 says:

    David, I too was once active on holocaust denialism on usenet. I remember the attacks on Ken McVey. My main document is still to be found at the Nizkor web site. I didn’t know about the ridiculous NAMBLA list . I can’t tell for sure if I ever was on it, because Google Groups has done such a crappy job with the usenet group archives. It was much better when Deja News ran it.

    From the nuttiness of revisionism, I moved on to the American militia movement after the OKC bombing,using my real name. I wasn’t popular. I figured that I was far away enough in Canada that no one would care. Bill Cooper did promise me, that come the revolution, I would be tried for treason and hung. He was somewhat mollified when I explained that I didn’t qualify for a charge of treason.

    I did get nervous when I attended a convention/show where a lot of these guys showed up, so I parked my car way in the back of the parking lot and tried to keep my mouth shut.

    Today, I would be a lot more careful posting on that type of topic, because I think there is less tolerance by the crazies of those who disagree with them. On the other hand, the rise of browser and websites, as opposed to unmoderated or robot moderated newsgroups, means that it is easy to avoid reading anything that disagrees with what you’ve already decided is true. So maybe the lessened tolerance is balanced by the crazies not reading anything that they disagree with.

    So I understand why you would want to keep your name quiet.

  63. pmoran says:

    Thanks for your support, Harriet. I nearly used you as an example of someone who, like Dr Barrett, tries to stick as closely as possible to establishable facts in their critiques of AM methods, but of course David and others do this a lot of the time, too, and I thought better of singling anyone out.

    It is so tragic that even such temperate writings seem able to inflame passions. Maybe nothing can appease the vocal extremists who dominate the alt.med Internet.

    However, they ARE extremists. In my experience there is a more sensible silent majority of listeners, even on totally paranoid cancer forums. It is they, along with the uncommitted that we want to keep from harm, as much as possible.

  64. daedalus2u says:

    Michelle, I think it was pmoran who suggested some comments were ad hominem. I think he was referring to my comments, but maybe I was projecting.

    In your example, the second mother is not a curebie. That is not a close call.

    The fundamental distinction is in the motivations of the parent. Is the treatment done to improve the quality of life of the individual, or is the treatment designed to change the child so that the parent can better relate to them.

    It is very much like Deaf culture. If you do not learn signing as your first language, you will not be able to use it with the proficiency of a native signer. Your signing will be obviously “off”, and (my hypothesis) you are more likely to trigger xenophobia in native signers. A child triggering xenophobia in their parent is extremely distressing to the parent, among the most distressing things a parent can experience.

    The taking of Native American children or Aboriginal children from their family of origin, putting them in foster care so they would grow up in the dominant western culture was done so as to reduce the feelings of xenophobia natives of the non-western culture invoked in those doing the genocide.

    I suspect that autistic children have a greater capacity to trigger xenophoobia in a neurologically typical parent than a non-native signing child does in a native signing parent. In the second case the communication neuroanatomy is configured to use signing instead of verbal language, in the first case the neuroanatomy lacks the neuroanatomy necessary for the nuanced communication that is necessary to not trigger xenophobia (my hypothesis).

    I think that the displacement of xenophobia from the autistic child onto “autism” or onto “vaccines”, or onto “pharma shills”, or onto any other external agent is a protective psychological mechanism, the externalization and displacement of the hatred the curebie parent feels toward their autistic child onto something else. That is a mechanism that protects the child from abuse by the parent. It is a rather ineffective mechanism.

    Orac had a blog post

    http://scienceblogs.com/insolence/2010/06/how_engaged_should_scientists_be.php

    about the strategy that scientists should use to move society in directions that scientists prefer. I think the CAM issue is quite a bit more narrow than the autism/vaccine issue or the religion issue.

    If you are going to influence people and society so as to change their world-view, you have to understand what their current world-view is and how and why they arrived at it. Unless you understand it, you are not going to be able to deal effectively with it.

    Curebies have no motivation to rid themselves of their xenophobia. They are not even aware that they have it. They live in a frightening, scary world, a world they think is populated by evil people who would inject poisons into children to make a few pennies. That is what xenophobia does, it takes all the humanity out of its objects, such that they are no longer human, no longer capable of human capacities, especially the human capacity to feel love and pain. If you believe an individual is incapable of feeling love and pain, you believe that individual is a non-human object. I have compassion for people with xenophobia, and fear also, but respect? Not so much.

  65. pmoran says:

    Alison: “What is your scientific evidence that the communication approach you advocate would be more effective than the current SBM blog?”

    Sorry, I missed this comment. There is nothing at all wrong with most of the material on the blog, apart from it not being easy to find critical data, especially if you are a newcomer.

    Am I advocating a specific communication approach? I’m not sure. I think Rosemary, I and a few others merely see some tendencies as a barrier to communication, even a diversion from what needs to be communicated.

  66. David Gorski says:

    Am I advocating a specific communication approach? I’m not sure. I think Rosemary, I and a few others merely see some tendencies as a barrier to communication, even a diversion from what needs to be communicated.

    Look, believe it or not, I agree with Harriet regarding your contributions to the discussions here. I really do. One of my oldest posts about alt-med cancer testimonials on my original blog was inspired heavily by material on your website, way back in December 2004. That post was recycled, polished, updated, and (hopefully) improved for this blog very early on, in 2008. You’ve done some fantastic work. I’ve even referred to you before in private e-mails among ourselves as the “conscience” of SBM. However, in this thread and in some of your comments in previous threads related to this, I cannot agree with you on many things.

    That being said, though, none of this will stop me (although it does give me pause) from calling you out when I think you’ve say things that don’t make sense to me or insinuate things about me and others here, no matter how “civilly” you go about it. You just expended a whole lot of verbiage in this thread lamenting how apparently insulting to alt-med aficionados you find some material on SBM, how you don’t like the stridency of some of us here and feel that we engage in ad hominem attacks. Fair enough. At one point, however, you insinuated that I and some of the commenters here do what we do out of arrogance, a need for validation from the choir, and to assert our intellectual superiority. You, in essence, are telling us that we’re doing it wrong–not just that we’re doing it wrong, but you’re also implying that we’re doing it for the wrong reasons. Not so fair, and it requires an answer. It’s also disappointing when you make such pronouncements about our techniques and efficacy but apparently can’t or won’t make any suggestions on what would work better.

    While it’s a legitimate thing to point out problems or where we might get a little too full of ourselves, I posit that you would have had a lot less hostile reception if you had refrained from the ad hominems, just as you tell us to do. And, yes, you did indulge in them, although it’s clear that you think you did not. Your entire set of questions about “intellectual superiority” and “applause from the choir” were clearly designed to cast doubt on the “strident” tone of some of the posts and comments here by attacking the motivations, rather than the arguments and the evidence for and against the efficacy–or, more specifically, the perceived harshness of the arguments–of the posters and commenters here. You could have accomplished the same purpose by simply sticking to arguments about tone and content, rather than questioning the motivations of people posting and commenting here.

    Let’s put it this way: Even if every single one of your insinuations were not only true, but actually didn’t go far enough in describing our supposed arrogance and need to assert intellectual superiority, that would not mean our arguments are fallacious or our techniques of argumentation ineffective. To use an example, Christopher Hitchens is sometimes a complete jerk, rude, obnoxious, condescending, and intentionally insulting, but he’s a very funny and engaging–but most of all, effective–jerk when he’s arguing his position. (No, I’m not saying that I’m trying to emulate Hitchens.) Also note that, contrary to what you apparently seem to think, I at least rarely question the motives of alt-med believers, even practitioners whom I consider to be charlatans. I don’t doubt, for example, that Jake probably has good intentions. The problem, of course, is that the proverbial road to hell is paved with good intentions. Behavior also matters, and I consider behavior and words to be fair game for harsh criticism when appropriate.

    I’ll finish up by pointing out that, if I wanted to, I could counter your anecdotes with anecdotes of my own from parents who have e-mailed me to tell me that I helped them come to the realization that vaccines don’t cause autism and that the autism biomed movement is rank quackery. Does that mean I’m more or less effective for being blunt and sometimes abrasive? Hell if I know. What I do know is that, for at least some alt-med believers and fence sitters, I am effective. You might even wish to consider another possibility. Sometimes, when the fence sitters see the sorts of attacks against me and others (such as the infamous Photoshopping of Steve’s head and that of other “enemies” of the anti-vaccine movement) into a picture portraying them as getting ready to eat a baby for their Thanksgiving feast, it shocks them to the point that they realize that these people really are extremists of the worst kind. They then begin to question what these extremists are saying. Just a thought.

  67. David Gorski says:

    It was only after I caught myself in a serious recurring inconsistency that I began to examine other standard skeptical assumptions more closely and found that a lot of them are not well supported by hard fact.

    Which specific “standard skeptical assumptions”? I’m curious. Seriously.

  68. daedalus2 – Thanks for taking the time to clarify your definition of “curebie” and how it relates to particular parents motives. It helps me to understand the concept of xenophobia as you are presenting it.

    I do wish there was a more precise word than “curebie” which, seems to me, too easily interpreted as including both kinds of parents.

    Regarding the deaf/CI controvery. Yes, what you said and also the other side. To put it in the terms you are using*, some deaf or HOH people would say that the use of early implant CI and oral language only communication is the hearing populations xenophobic reaction to the deaf/HOH/signing community.

    Thanks again for your time, as a parent of a child with special medical needs it’s always good for me to take a close look at the feelings, motivations and science behind decisions.

    *to be clear, I’ve never actually seen the word xenophobic in that debate, I am reinterpreting the arguments.

  69. rork says:

    Will pro-vaxy bloggers and docs advocate change (or denounce) the new MMRV findings:
    http://pediatrics.aappublications.org/cgi/content/abstract/peds.2010-0665v1
    (I can’t think of a large enough source of bias to explain it, but I’m not that expert. There may be a tricky cost/benefit calculation to do too for the 1 vs. 2 jabs.)

    More off-topic, but I find no better suggestion box (teach me!):

    A review of poor physician adherence to cervical cancer screening guidelines:
    http://www.ncbi.nlm.nih.gov/pubmed/20548011
    Arch Intern Med. 2010 Jun 14;170(11):977-85.
    (the better docs did better – that’s reassuring).

    A surgeon might prefer chastising other surgeons for whom “evidence-based medicine does not appear to uniformly influence clinical decision making”
    http://www.ncbi.nlm.nih.gov/pubmed/20213210
    J Gastrointest Surg. 2010 May;14(5):904-9.
    (the study has some problems, but is still a little scary, and it’s about digestive surgeons – is that barrel-bottom-scraping?).

    Good news anecdote: evidence-based concern seems increasing in the literature.

  70. David Gorski says:

    In the abstract of that last one:

    Variability in the quality of evidence and ambiguity in the survey questions may have influenced the responses, but evidence-based medicine does not appear to uniformly influence clinical decision making.

    I can’t know until I read the paper, but one problem with such surveys is that there are a lot of gray areas, where legitimate disagreements occur on the basis of scientific and medical argument and the “correct” answer is not always so clear-cut. I’m always suspicious of studies like this, because they are very dependent upon the quality of the questions used in the survey.

  71. daedalus2u says:

    Michelle, I think my construct of it as a variant of xenophobia is new. I discuss my understanding of the physiology of xenophobia in great detail on my blog in the post I link to above. I think that xenophobia by the mechanism I discuss is an important and generic mechanism behind bigotry and intolerance of many types.

    I think because xenophobia starts out as a feeling, people don’t have conscious access to the root causes and can’t understand, analyze or manipulate those feelings in terms of facts and logic. Many humans have as their default the rejection and denigration of what they are do not understand.

    I think in many cases the feelings of xenophobia are not understood to be xenophobia. I think in the case of the taking of children from Native American families, from Aboriginals, from Deaf families and even from foreign countries and minority families, the intent of those doing the taking is to provide those children with a “better” life. The implicit assumption is that the western culture of the takers is “better” than the culture of the family of origin when ever the family of origin is not western, white, wealthy and Christian. But to take children from their family of origin and not allow them to grow up in the culture of their ancestors is to irreversibly destroy that culture. The irreversible destruction of the culture was the goal in many instances.

  72. Dawn says:

    Maybe it’s me, but this sentence from the abstract #2 posted by rork makes no sense (bold added):

    “Among Pap test providers who recommend HPV testing, 31.8% reported that they would conduct the next Pap test in 3 years for a 35-year-old woman with 3 normal Pap test results. For a 35-year-old woman with a normal Pap test result and a negative HPV test finding, only 19.0% would conduct the next Pap test in 3 years.”

    Are they saying that if this 35 year old woman has had only 1 pap smear in her life and now has a normal pap with negative they would not do another in 3 years, rather, they would do them yearly? And yearly for how long? And did the previous woman have 3 normal paps in 3 consecutive years or further apart? Did shehave an HPV test also?

    Perhaps the full article is more specific; the abstract is not well written.

  73. Dawn says:

    @rork and Dr Gorski: something else struck me on the 3rd article. They queried surgical residents, attendings, and surgical oncologists on GI surgery.

    I’m sorry, David, but I don’t think I would come to you for GI surgery. Not your specialty, nor would I expect you to know all the EBM for those surgeries.

    Nor would I go to a GI surgeon or a general surgeon for breast cancer surgery. I wonder if the questions would have been answered better if they’d asked only those surgeons who perform GI surgery?

  74. wales says:

    Rork: Regarding your MMRV comment and the findings of increased risk of febrile seizures. Monday’s NY Times article quotes the lead investigator and director of the Kaiser Permanente Vaccine Study Group as saying “Unless parents have a strong preference for the combination vaccine, providers should use a separate vaccine”.

    http://www.nytimes.com/2010/06/29/health/research/29child.html?adxnnl=1&emc=eta1&adxnnlx=1277809995-ac81Fk3qxzjlbVIEwS7MlAToddlers

    Add me to the list of pmoran’s admirers. I find pmoran’s comments refreshingly unbiased and honest. The defensive reactions from some sbm regulars are extremely interesting.

  75. David Gorski says:

    Nor would I go to a GI surgeon or a general surgeon for breast cancer surgery. I wonder if the questions would have been answered better if they’d asked only those surgeons who perform GI surgery?

    A valid point. On the other hand, note that the sample included surgical oncology fellows at Memorial Sloan-Kettering. These fellows know both breast and GI, because a surgical oncology fellowship provides broad training in breast and GI cancer surgery because it’s designed to produce a broad-based cancer surgeon who can then later specialize in nearly any aspect of cancer surgery he or she wishes. As for GI surgery, pretty much all general surgeons who have not super-sub-specialized (like me) do GI surgery on a regular basis.

  76. Dawn says:

    Oh. I didn’t know that about that about the surgical oncology fellowship. Thanks. :)

    And I guess I got the impression that GI surgery was rather a sub-specialty but maybe that’s because of where I live. I’ve not had a lot of experience with general surgeons (thankfully!); everyone I know is a body-part specialist. (wry grin)

  77. terrorrainbow says:

    [quote]In my experience there is a more sensible silent majority of listeners, even on totally paranoid cancer forums. It is they, along with the uncommitted that we want to keep from harm, as much as possible.[/quote]

    It’s fortuitous that I’m reading this today, because I had a conversation last night that changed my position to agreeing with the essence of this statement a lot more than I did before.

    My roommate works in a vitamin and supplement shop and we’ve had a lot of arguments because of it (she treats cuts with colloidal silver and believes flouridated water is dangerous) although we do agree on a few things (the importance of vaccines being one of them). She has a coworker who’s a Doctor of Divinity and has no compunction about throwing the title “doctor” around to back her opinions about medicine. This woman is the author of several alt-med books and is working on a new one about how alcoholism is actually a form of yeast addiction.

    Last night my roommate confessed to me that it worries her that people will pick up that book and see at as an easy answer to their alcoholism. It’s the first time she’s expressed any sort of concern that alt-med claims could be dangerous and was a major moment of reconciliation between us. I told her that I didn’t doubt some things they sold had a beneficial effect, I was just opposed to people seeking easy answers to complex problems.

    It’s not going to stop me from chuckling at some of her more bizarre claims, but it was both startling and educational to realize that someone who is actually involved in alt-med could have the same concerns I did.

  78. Sullivan says:

    I agree that critiques should be made and can be quite valuable.

    But, to rephrase my previous comment–

    I found pmoran’s comments to do exactly what he appears to be accusing Dr. Gorski of doing–turning off his intended audience. By claiming to know the motivations of the blogger, and by judging those assume motivations, he has likely lost the interest of many of his readers. I know I am put off immediately whenever someone does that–whether I agree with the person or not on other parts of the discussion.

  79. daedalus2u says:

    What struck me in looking at the abstract was that they asked 13 survey questions, and they could only answer “never,” “rarely,” “often,” or “always”.

    My guess is that most of the answers were “rarely” or “often”. I suspect that with a real patient a little more care would be taken and maybe even a reference or two would be consulted.

    When you ask a question that pulls for an anecdotal answer, it shouldn’t be surprising when you get an anecdotal answer.

    A much better answer would be obtained by looking at what actual patients actually received as care even if done retrospectively. But that would be human experimentation and would require an IRB, and informed consent of the patients. It couldn’t be done retrospectively (I don’t think).

  80. pmoran says:

    # David Gorskion 30 Jun 2010 at 8:46 am
    “It was only after I caught myself in a serious recurring inconsistency that I began to examine other standard skeptical assumptions more closely and found that a lot of them are not well supported by hard fact.”

    Which specific “standard skeptical assumptions”? I’m curious. Seriously.

    PM It is easier to state where the science seems clear-cut, and which skeptical stances seem based upon the soundest reasoning.

    So, it is pretty certain that many alt treatment methods do nothing in themselves therapeutically. Beyond that the science of medical interactions is still fuzzy as to the potential of non-specific benefits.

    I agree that universities and hospitals should have minimal truck with CAM, also that, in general, we should not be required to fund CAM for others.

    Beyond that much is arguable. I am not sure that it is possible to either argue or legislate CAM out of existence, or that it would be an unqualified good thing if we did, or that it is not simply arousing counter-productive passions when we give the impression that we want to.

    Skeptics have much to say about science education — the actual evidence suggests that unsatisfied medical need is a more influential reason for the public trying “alternatives”.

    That will give you some idea.

  81. pmoran says:

    David: “I’ll finish up by pointing out that, if I wanted to, I could counter your anecdotes with anecdotes of my own from parents who have e-mailed me to tell me that I helped them come to the realization that vaccines don’t cause autism and that the autism biomed movement is rank quackery.”

    I am sure that is so. What do you think convinced them?

    BTW, I have re-read my initial post about analyzing the alt.med mind and I still see it as a plea for more scientific objectivity in trying to understand why alt supporters think the way they do. Perhaps it is clumsy, I lack the vocabulary and writing skills of some here.

    It is easy, for example, to underestimate the power of the personal testimonial, when attributing alt.med beliefs to logical fallacies or blind, “faith-based medicine” or some other mind-quirk. It is quite normal and natural for lay persons to react to personal testimonial in the way they do. In a sense, the SBM approach to testimonial is the anomaly, being based upon experiences that are peculiar to the medical profession and highly sophisticated clinical research.

    And even that is not yet conclusive enough for testimonials to be entirely discounted, at least where subjective conditions are concerned.

  82. pmoran says:

    “And even that is not yet conclusive enough for testimonials to be entirely discounted, at least where subjective conditions are concerned.”

    Yet another qualification needed — I mean that the facts as stated in the testimonial including the claimed benefits may be true, not that they are attributable to any specific treatment used i.e. they may be psychologically mediated effects.

  83. Peter,

    Sorry, I missed the latter part of this thread. I also interpreted your original post as “a plea for more scientific objectivity in trying to understand why alt supporters think the way they do”—not only because it reads that way, but because that is the theme that you’ve been stressing all along. On the other hand, I don’t interpret the subsequent exchanges between you and David as “an argument,” but as a discussion—a vigorous one at times, and a good thing, too.

    I count my own exchanges with you among the most satisfying experiences that I’ve had while writing for this blog, and although we’ve disagreed about some things, I would be disappointed to think that my positions read as “defensive reactions”—not that wales was referring to me, of course.

    KA

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