HIV/AIDS denialism, the Ministry of Truth, and the failure of memory holes in the Internet Age

One of my favorite novels of all time is George Orwell’s classic dystopian novel Nineteen Eighty-Four. When it came to imagining the end to which totalitarianism could take us, no one before or since has written a more compelling book about living under such a regime.

One aspect of Oceania, the fictional totalitarian state ruled by Big Brother, that still stands out when I think about the book is how Big Brother dealt with inconvenient news and history. In the book, Winston Smith, the protagonist, works at a government agency called the Ministry of Truth (also called Minitrue), one of the four Ministries that translated Big Brother’s policies into practice. The Ministry, in order to make sure that all history agrees with the government version and that any prediction Big Brother makes about events is validated, is engaged in a constant “reimagining” of history. For example, if the government makes a prediction that turns out to have been incorrect, employees like Smith at Minitrue would rewrite every old newspaper, news account, and book mentioning the prediction to bring them in line with what actually happened and make it look as though Big Brother had been correct all along. Or, if Oceania switched alliances in its seemingly endless wars, history would be rewritten to state that Oceania had always been allied with its current allies and always been at war with its current enemy. Meanwhile, every document reflecting the old, “incorrect” version of history would be gathered and placed down chutes leading to huge incinerators. These chutes were colloquially known among Ministry of Truth employees as memory holes. The idea is that, if there were no physical evidence to back up memories that do not jibe with official government pronouncements, people would tend to realign their memories to agree with what they are told.

I think I’ve just seen an attempt by HIV/AIDS denialists to emulate the Ministry of Truth and create their very own memory hole.

Recently, I wrote about the tragic death of HIV/AIDS denialist Christine Maggiore. When HIV/AIDS denialist Celia Farber wrote an “explanation” for what “really killed” Maggiore (it was a “radical detox treatment,” not AIDS, don’t you know?), I looked at that claim, too. Not content with unintentionally giving strong evidence that, whether it was AIDS denialism or outright quackery, woo killed Maggiore, Farber dug herself in deeper by posting an e-mail by Christine Maggiore dated December 19 that seemed to indicate that Maggiore had been ill a lot longer than was “convenient” for denialists to admit and had suffered a clinical course of illness before her death that was very consistent with Pneumocystis carinii pneumonia (PCP)

Over the last couple of days, some readers pointed out to me that the link to Celia Farber’s second post, the one in which she republishes Christine Maggiore’s e-mail of December 19, no longer works. There is now an explanation on Dean Esmay’s blog for why: Farber admits that she took it down. I can’t help but think that she knows she did harm to the cause of HIV/AIDS denialism by republishing that e-mail which, quite frankly, only served to confirm in my mind (and that of many others) that Maggiore very likely did die of an AIDS-defining pneumonia, probably PCP. After all, in the three or four weeks prior to her death, she had become progressively short of breath, complaining that even minor exertion made her so. Her lungs were clear on physical examination, but she asked for an X-ray nonetheless. Why on earth would she do in the face of a normal clinical examination that if she weren’t worried about PCP? Surely she was aware that one of the characteristics of PCP is a progressive shortness of breath with minimal exertion accompanied by no abnormalities in breath sounds on physical examination. Also, the clinical course was about right, around three weeks of gradual deterioration. Moreover, she was still dehydrated as many as two weeks after her “detox cleanse,” which makes it hard to blame the cleanse for persistent dehydration. Many cleanses often include vigorous oral rehydration regimens to help “flush out” the toxins, and in any case if she were healthy she should have been able to rehydrate herself in a matter of hours or, at most, a couple of days.

In any case, predictably, Farber lays on the inflammatory rhetoric:

I took down the post I wrote the other day in which I re-published an email from Christine Maggiore, in her own words, about a week before she died suddenly and unexpectedly at home, on December 27.

I want to contribute toward a much needed silence. Things will work themselves out, truths will emerge, whatever is, is.

I don’t want to bring anything loud or contentious to Christine’s memory, or provide a feeding ground for those few vultures whose egos remain tied up in their insatiable death wishes, not only those they projected onto Christine, but onto all HIV positive people they wish to enslave with their cult of fear, and deprive of the fundamental human right to make their own choices.

I guess Farber counts me as one of those “vultures,” if she’s seen my posts, that is. Of course, I had no desire to see Maggiore die. Her death saddens me. It doesn’t sadden me as much as the death of her daughter did, but I was nonetheless still saddened.

Also note the typical “health freedom” rhetoric, though, beloved of believers in pseudoscientific health claims like HIV/AIDS denialism. To cranks like Farber, it’s apparently not enough to say that doctors are wrong about HIV and AIDS. Rather, evil motives have to be attributed to them, such that in Farber’s fantasy world doctors aren’t just sincerely mistaken but still wanting, in their “misguided” way, to save HIV+ patients. No, to Farber, doctors wanting to prescribe HAART to HIV+ patients must be evil and want to “enslave” patients in a “cult of fear” and deprive them of the right to make their own choices. These physicians must be demonized and despised as the enemy.

What a load of hooey. Or, if you prefer, a steaming, stinking, burning turd of stupid left on the doorstep of science-based physicians.

Maggiore was free to refuse HAART. She was an adult, after all, and, as far as I’m concerned, competent adults can refuse therapy for pretty much any reason, rational or not, or even for no reason at all, as long as they are made aware of the likely consequences and their decision does not endanger others. Maggiore was also in a monogamous relationship with a man who knew her HIV status; so it’s not as though she was risking spreading the virus to the unwitting through her continued refusal to take HAART or, presumably, to use condoms. What I cannot abide is when adults deny their children effective therapy in the name of irrational and pseudoscientific beliefs. Adults can do close to whatever they want with their own bodies, but they do not have some sort of divine right to endanger their children with pseudoscience, which is why I was so harsh on her for not having taken HAART when she was pregnant with EJ and for blithely breastfeeding when not doing so would have significantly decreased the risk of transmission of the virus to her child.

Worse, Maggiore aggressively spread her gospel of “happy happy joy joy,” “don’t take that HAART; it’s a product of evil big pharma seeking to enslave you” to HIV+ people. “Really,” she all but said, “you’ll be fine.” Well, a lot of people, including her daughter EJ, weren’t “fine,” and Maggiore herself is no longer “fine.” She is dead. Maggiore was lucky in that she was clearly an outlier, having gone at least 16 years without an AIDS-defining illness, but, if she did die of AIDS, she was nonetheless still within the range of normal variability for the virus’ progression from infection to AIDS. In any case, it is quite possible to be saddened by Maggiore’s death and at the same time point out that she had dedicated her life to a dangerous pseudoscience that kills. Indeed, that dangerous pseudoscience appears very likely to have ended up killing her.

I particularly like this bit of relativism:

I defy anybody to find a single communique from Christine Maggiore in which she reveled in the deaths of her attackers or their friends, who have died in the hundreds of thousands, following orders, taking the drugs. There are deaths on all sides; The answers light up like fireflies, then vanish. Who among us can claim to know what is really happening? All we can know, all we can control, is who we are as human beings, how we treat others, and especially how we treat those who think or believe different things than we ourselves do.

I defy Farber to find a single communique from skeptical bloggers like myself “reveling” in Maggiore’s death. Certainly, I do not, even though I do blame her for the entirely preventable death of her daughter.

Yesterday evening, I learned that it wasn’t enough for Farber to throw one post down the memory hole of HIV/AIDS denialism. She went and did an even more blatant Minitrue with another post. The first post, originally entitled What Killed Christine Maggiore, it’s now been–shall we say?–reimagined as Christine Maggiore, Pure Spirit. Gone are all the references to Christine undergoing a “radical detox” regimen three or four weeks prior to her death and that it rendered her so weak that she could not fight off a routine pneumonia, and gone is Farber’s original statement that she’d like to see an autopsy to determine what really killed Christine Maggiore. All that remains is a syrupy glop of praise ladled on thick, sweet, and stultifying.

Unfortunately, for Farber, on the Internet, memory holes do not work, and attempts to rewrite history à la Minitrue almost inevitably backfire. Indeed, some of Farber’s own allies don’t appear to have gotten the message. For example, Science Guardian reposted Maggiore’s e-mail, and Fintan Dunne reposted the entire text of What Killed Christine Maggiore. Clearly Farber realized that her two posts had not only failed to refute the claim that Maggiore died of AIDS, but had actually added support for that contention! More damning behavior is hard to imagine. Indeed, the more I read from Farber, the more convinced I became that Maggiore almost certainly died of an AIDS-related pneumonia.

Meanwhile I and many others have saved the text of the two posts and are ready to repost them again if some of Maggiore’s supporters realize what a mistake they’ve made and start trying to use the memory hole as well. I guess that, in the Internet Age, Orwell was probably wrong, which is fortnate. What is unfortunate is that he was right–prescient, even–about other things, particularly about how massively language can be distorted to serve ideological purposes. HIV/AIDS denialists have learned that lesson well; it’s just that this time, in this case, they screwed up.