Category Archives: skepticism

Judy Mikovits in jail.

(Reposted from my Tumblr.)

Two years ago, researcher Judy Mikovits was riding high atop a wave of promise.

She had published one of the most discussed papers of the year in one of the most prestigious scientific publications in the world.

Her team’s findings were hailed as a potential breakthrough for an illness — chronic fatigue syndrome — that had long frustrated researchers. She was invited to speak at scientific conferences around the globe. Adoring patients crowded her at her talks.

Now, in a stunning twist, Mikovits is sitting in a California jail cell, held without bond, awaiting an arraignment hearing Tuesday. An arrest warrant issued by University of Nevada at Reno police lists two felony charges: possession of stolen property and conspiracy.

She was fired in September, and this month her former employer filed a lawsuit alleging she had wrongfully taken lab notebooks, a computer and other proprietary data. Other researchers have discredited her work, and the journal Science, which published her study, is investigating whether the data were manipulated.

The only constant is the patients who continue to rally around her.

“Remember that we are behind you every step of the way, even whilst you sit alone in jail wondering what will come next,” one person wrote on a blog called OslersWeb.

(source: Trine Tsouderos, Chicago Tribune)

Well, what in the seven hells is this now? Could this scientific soap opera get any more bizarre? Never mind, forget I asked.

“The only constant….” Yes, the only constant there will ever be are the patients who have completely abandoned critical thinking in favor of hero worship. These are the exact same types who continue to lionize Andrew Wakefield despite his incompetence, fraud, and penchant for giving colonoscopies and spinal taps to children without consent or approval. No matter whether Mikovits is found to have committed two federal crimes, or defrauded the entire ME/CFS community, these patients will be “behind [her] every step of the way.”

I’m pretty sure if Mikovits killed an ME/CFS patient with an XMRV-infected mouse, in front of two CCTV cameras and a network TV crew, this particular subset of the community would claim she’d been framed. Why am I not writing as much about ME/CFS anymore? Because these very people have completely worn me out with their ridiculous bullshit. I loathe having to be associated with them and I’m no longer going to sugarcoat it.

Happily, science has moved on to many more interesting research angles. What are these die-hards going to do when a cure or treatment comes from, say, gene research and not XMRV, I wonder? Admit they were wrong? I eagerly await that day for a number of reasons.

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What time is it, kids?

It’s “whack a quack” time!

There’s a particularly time-intensive form of blog spam that I’ve started getting emails about. It’s the one where someone oh so generously offers to write a guest post for your blog! Wow, what a relief to have a post I didn’t have to write. It will be of the highest quality, of course, and include many amazing, game-changing treatments for ME/CFS. It’s almost like a charity act, if you think about it.

The thing about this one is the spammer is forced to provide a working email, so that when you accept their once-in-a-lifetime offer, you can contact them. And I always do, and I don’t think I have to tell you what I say. And they never write back.

Until now.

Here is the unedited text of an email I received today:

hi,

i have an [sic] fatigue site and i would love to write a guest article for you on treatments that i have found to help symptoms like insomnia, brain fog, etc.

I’ll write a 700+ word article that is great quality + i’ll do unlimited revisions until you’re happy [sic]

my site is chronicfatiguetreatments.com

Let me know if you’re interested and i’ll send you an article.

First of all, based on this email, I’m not quite convinced of the amazing quality of this proposed article. Second, note that ME/CFS or even just CFS is never mentioned. Just “chronic fatigue.”

I replied to this email in not the most polite and cordial manner. No, I didn’t check the site, as a good skeptic would have, but good skeptics also have this thing called “experience” where sometimes you just don’t need to expend the energy on research. I made it very clear that if I were contacted again, I would write my own post about this little exchange.

And he contacted me again. Which I take as a tacit acceptance of my terms.

Let’s play a game. Don’t check out that site just yet. First I’ll quote the response, then we can see if I was right in the first place. Emphasis is mine.

what are you talking about? i’ve been sick for 11 years and I made a website about it in 2006. I don’t care about the name “chronic fatigue”, because no one knows what the cause of it is anyways. When they find out, they will just end up changing the name, so the name really is not important to me at all.

Way to jump to conclusions, based on no facts. Sorry to bother you, Im [sic] sure you’ve got a game of WOW to get back to [sic]

1. Quacks and their shills always claim to be ill or have recovered from their illness.
2. The name is one of the largest controversies among patients and researchers.
3. There is new and exciting research on both terminology and etiology (see link in 2).

So here we have someone touting remedies for an illness that doesn’t exist (remember, chronic fatigue is a symptom not a diagnosis), who is completely tone-deaf to the needs of the patient community, not to mention the current state of research. Do you want this person recommending treatments to you?

Now let’s check the site, which of course I did in case my quackdar was off and an apology was warranted. Please, in all sincerity, if the site doesn’t immediately set off every quackery and snake oil alarm you have, please ask. I don’t see the need to go through right now it but if necessary, I would be happy to elaborate. What I most hope is that my fellow patients and other spoonies don’t fall prey to this clumsy and elaborate deceit.

So, granted, I did indeed jump to conclusions based on very little info. But as it turned out, the little info I had was excellent, and the conclusions were completely accurate.

Thank you to my email correspondent for providing the material for this post. And now, if you’ll excuse me, I have a “game of WoW” to get back to.

UPDATE 4:39pm: Respondent has changed his tune to how wonderful and nice he is and how he just doesn’t get it. Respondent also continues to insult me in the same breath, thus rendering his assertions extremely doubtful. Respondent further continues to be oblivious to the fact that I’m not in the least bit embarrassed to be a gamer, but apparently has no fresh ITG (Internet Tough Guy) material.

UPDATE 5:12pm: Spammer turns into concern troll, simultaneously appeals to my vanity by offering to be friends. Email harvesters, fellow patients, do feel free to contact him at jameson111@mail.com. It’s okay; he agreed to have it posted here.

UPDATE 6:02pm: With his next contact, I provide some howlers from the site that show the people who run it are not interested in your health. Again, posted with permission.

Chronic fatigue syndrome is a very misunderstood illness with no known cause. Currently it is defined as “severe fatigue that lasts longer than 6 months, which is not relieved by rest”. Also known as CFS, it is diagnosed only by excluding all other medical issues that can lead to these symptoms.

Is is just me or has nobody been paying any attention to recent research (or heck, just reading The Wall Street Journal or the Chicago Tribune)? This is hopelessly outdated to the point where it’s untrue.

This one just needs to be read in its entirety. Note the “high quality” that I’m guessing would be a hallmark of the proposed guest post.

UPDATE 8/30: I’ve ended my correspondence with this person, but his emails from this morning warrant one last question to you, my friends: Would you prefer your heavy metal chelation up your veins or up your ass?

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You are not prepared!

I should have taken Illidan‘s wise words to heart.

As others have also expressed to me, Holocaust denial seems like a particularly evil form of pseudohistory. The belief is inextricably linked to a rather violent form of anti-Semitism, in thought if not in deed. People who deny the Holocaust are keeping Hitler’s dream alive by attempting to erase the genocide of European Jewry.

I have read a lot about Holocaust denial in skeptical publications, published on paper or online. In the ’90s I followed David Irving’s libel case against Deborah Lipstadt, who had rightfully called him out for his denialism and his bigotry. (And I was extremely pleased when he lost that case, and later declared bankruptcy due to the fines levied against him.) I was made to ponder a couple of Jewish people who denied the Holocaust, which reminded me of the Israeli Orthodox Jew who assassinated prime minister Yitzhak Rabin — something that I did and do still find very disturbing.

I believed I was prepared, knowing these people existed and having read all the suggested rebuttals, although I think trying to reason with Holocaust deniers is like atheists trying to change the minds of believers: generally a waste of time.

Then recently I looked at a Facebook photo album posted by someone I know barely at all. It was a very moving set of images from a visit to one of the Nazis’ most infamous death camps. I went to the comments to add my kudos, and found I had interrupted an argument between a rational commenter and an anti-choice radical who had gone into a comparison between abortion and the Holocaust. I stopped reading the guy and simply blocked him, but another commenter stopped me cold:

The Holocaust is a lie.

Skeptics always seem to joke, sometimes darkly, about issues like these, so before I jumped to a conclusion, I neutrally queried the “Pastor” (which was part of his name) about his meaning.

I had a shockingly visceral reaction to the answer. It began with my name, and then there was a very cogently written response including mentions of the Zionist media, that Hollywood created the Holocaust, and other things you’d expect from a student of the Protocols of the Elders of Zion. And I just froze, with my body going into fight-or-flight mode. There was a lump in my stomach, my hands were sweating, and my heart was racing.

It may not have been an in-person exchange, but it felt personal nonetheless. Very personal. My mind flashed through the stories my grandmother told about our family that often included the aside  “(he died in the death camps).” I remembered interpreting a tour through a memorial museum for a group of deaf students, and how it felt having to remain professionally unfazed. I thought about the mountains of evidence I could have presented to this guy, personal stories, statistics, photos, everything.

Berlin's Holocaust memorial

And I walked away. I replied I’d be blocking him (not reporting, just a personal block), and then did so. I’ve walked away from many a brewing argument about a huge and/or emotional topic, having learned the technique from listening to my father’s views on many subjects on which we strongly disagree. He trolled me before I even knew what trolling was, and now being crippled by a lack of energy, I’m frequently walking away from discussions or arguments that I know will be fruitless and cost me energy that I can’t spare. And since the opening salvo had already awakened my animal brain, I recognized that I should and could not go further without descending into a really ugly situation.

But with this guy, it felt like I was caving. I don’t consider myself any kind of authority on Judaism, but I know enough from my upbringing and further study in college, as well as having an emotional connection to the Sunday Hebrew schools and seders and High Holy Days of my childhood, as well as the secular aspects of the culture that I loved. It seemed somehow that I should have held up the standard and challenged the pastor calmly and rationally in defense of it all. And I failed at that, even though it was the right thing for me to do.

Skeptics have their different areas of interest or specialty. Many people consider this or that person or practice to be pure evil, like homeopaths who let babies die from treatable illnesses, or the antivax crowd, or the people who are blocking the repeal of “don’t ask, don’t tell.” Everyone has a different view and experience of evil. But it turns out that for me, skepticism — which is a solid way of viewing the world and can be a shield against the ignorance and hatred — was no protection at all against the feeling that I was being spoken to by an evil man.

Someone in this comment thread opined that the abortion loonie and the pastor were both attempting humor, or “being a Poe” we might say. I don’t have any evidence, because I didn’t seek it, as to whether he was acquainted with the posters. I did see the pastor’s profile when I went to block him; at first glance it did not resemble a Poe to me at all, but I admit I didn’t read it thoroughly enough to confirm it. But as I thought about that, I realized it didn’t matter. Whether a true denier or a perfect parrot of one, the sentiments aimed at me hit home like nothing I’ve yet experienced since becoming involved with skepticism. It didn’t matter whether the person were serious or joking, because even if it was a joke, the words displayed the exact same sentiments as those who believe.

I don’t have a moral to this story, because I’m not going to presume something like “all skeptics should watch out for blah, blah, blah.” For all I know, you reading this post are able to counter all opposing, even offensive opinions with perfect calm, and more power to you if so.

It was a lesson to me, one I haven’t entirely figured out yet, about being prepared to be unprepared in the face of something I thought I could handle. About the uselessness of skepticism at moments like these. And about how scarily close I believe I could come to turning into one of those loonies, just by engaging with them.

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