Tag Archives: antivax

Bitten and shy

There is an ongoing war, as well there should be, waged by the proponents of medical science against those who reject, demonize, deny or misuse it. The war takes place on many fronts and on many levels, and some successes include the continuing downfall of Andrew Wakefield and the pronouncement by the British Medical Association that homeopathy is “witchcraft.”

Skeptics generally don’t have much use for people who have rejected medical science, or “allopathy” as some of those people would have it. (A term, by the way, invented by the guy who made up homeopathy.) Such people are usually characterized as, variously or in combination, stupid, ignorant, denialist, uneducated, brainwashed, crazy, deluded, superstitious, and even dangerous, to themselves or others.

And some of them are. The homeopath who killed his daughter by refusing actual medical treatment for her eczema is dangerous and possibly crazy. Religious objectors to blood transfusions and chemotherapy are superstitious. The scared parents of autistic children who throw in their lot with the anti-vaccination movement are poorly educated on the topic of vaccines. And then there’s people like the Health Ranger and J.B. Handley and so on, people who I won’t dignify with a link, but to whom I am happy to apply some if not all of the above epithets — and worse.

But there’s a certain population that I believe deserves greater compassion and understanding. People with long-term, incurable chronic illnesses may often come to reject science-based medicine because they themselves have come to actual harm from it, and sometimes repeatedly. I’m not talking about hypochondria or persecution complexes. I’m talking about people who have undergone actual trauma, mental or physical, at the hands of medical doctors. For example, this link is not from the most reliable site, but the incidents related are far from unheard of in the ME/CFS community — misdiagnoses, harmful biases, lack of understanding about the illness, and worse.

Don’t get me wrong. I’m not giving anyone a pass. I went through a hellish time when I was diagnosed with Graves’ and the incompetent idiot of an endocrinologist overdosed me so heavily on anti-thyroid medication, it took a year for me to recover from being seriously hypothyroid, during which time several other problems arose that have left me disabled. After that it took uninterested doctor after uninterested doctor before I found one who not only gave a crap that I was no longer able to function, but even cared enough to treat me! Oh yes, I was bitter. But rejecting science altogether because of your bad experiences is like never reading a book again because you thought Twilight was a piece of excrement. All of this taught me how to better evaluate doctors, and since then my experiences with physicians have improved greatly.

So this is not an apologia, but rather a plea for understanding. The people I’m talking about haven’t simply slipped into a life of hippy-dippy naturopathy due to the toxins in the air and the mercury in vaccines. They have been physically injured, had their illnesses worsened, been humiliated and brushed off and laughed at and completely invalidated by physicians, all the while struggling to cope with being sick or disabled. Not only has science “failed” these patients (as they see it) by not having provided a cure or even a treatment for some of those illnesses, but its individual representatives have personally failed them as well. These people don’t just imagine they’ve been done wrong by science, like the antivaxxers — they legitimately have been, just as my being overmedicated and spending months in “hypo hell” were not figments of my imagination.

If you put yourself into that position, I don’t think it’s too hard to see why someone might eventually give up on science, especially someone who has undergone years if not decades of these problems. Maybe they turn to homeopaths and naturopaths, who of course profess deep caring and understanding because they literally have nothing else to offer…but it’s attractive to patients who have been routinely dismissed by “allopaths.” Or maybe they glom on to what looks like science — such as a single, as yet unreplicated XMRV study — but refuse to let the actual scientific process take place before canonizing its researcher and creating a cult of personality, not of logic or evidence. Neither situation is positive and, again, I am not excusing people on the basis of what they’ve gone through. It is very hard to hang on to one’s critical thinking in these situations, but that doesn’t make it okay to give in to paranoia and superstition.

From a page titled "Nazi Connections to Allopathy." Seriously.

When it comes to winning back the minds of patients who have retreated from science as a reaction to their experiences, perhaps skeptics need to take a different tack. Some people go down the rabbit hole and never come back, of course. (And I always wonder about those anti-science converts and what’s going to happen on the day that science produces a cure or treatment for their illness, the one that homeopathy will never come up with. Will they reject it on principle? Unlikely.) I’m not talking about them, because why fight a battle you can’t win? But I truly believe skeptics need to stop lumping all these “denialists” into the same camp. Promoters of science-based medicine will occasionally throw a bone in the direction of “feeling sympathy for these people but…“, a statement unlikely to reach someone who has heard this line zillions of times. True compassion, however, just might.

We skeptics constantly exhort people to stay open-minded and thoughtful about these subjects, but the same onus is upon us. Assumptions about the reasons and motivations behind people’s rejection of medical science do nobody any good. Sick, exhausted, cognitively impaired patients do not deserve to be tarred with the same brush as those who actively seek the defamation and destruction of medical scientists. To people for whom there is no medicine other than Western scientific medicine, any rejection of that may seem intolerable, no matter what the reason. But the reason truly matters, because when you ignore that, you may be ignoring someone you could help, if only you hadn’t written them off like they’ve been written off so many times before.

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Weekend sendoff: Judy Mikovits and bad science

No sendoff today, instead some strange news to discuss. A few days back, Data_Jack was kind enough to alert me to a new post at ERV, which briefly mentioned that Judy Mikovits will be presenting about XMRV at the AUTISMONE conference.

A little background. Mikovits is the lead researcher on the XMRV study done by the Whittemore Peterson Institute (WPI). Austimone.org lionizes the now completely discredited Andrew Wakefield, as well as the eminently irrelevant Jenny McCarthy, in their efforts to continue frightening parents with bad science about a nonexistent link between vaccines and autism. Given that the CFS-XMRV link itself is still utterly tenuous, I was somewhat alarmed to see that Mikovits has moved on to autism.

And with good reason, as it turns out. I did a little searching about XMRV and autism, and found this article from another bastion of antivax lunacy, the Huffington Post. In it, Mikovits is quoted as follows (emphasis mine):

“On that note, if I might speculate a little bit,” she said, “This might even explain why vaccines would lead to autism in some children, because these viruses live and divide and grow in lymphocytes — the immune response cells, the B and the T cells. So when you give a vaccine, you send your B and T cells in your immune system into overdrive. That’s its job. Well, if you are harboring one virus, and you replicate it a whole bunch, you’ve now broken the balance between the immune response and the virus. So you have had the underlying virus, and then amplified it with that vaccine, and then set off the disease, such that your immune system could no longer control other infections, and created an immune deficiency.”

What. The. Fuck.

What is Mikovits up to, not only cozying up to one of the largest dangers to public health — the antivax movement — but spouting their party line that has no basis in scientific fact? What respectable scientist would perpetuate this myth, even with that gutless “I’m just speculating” caveat?

Here is the abstract for her presentation:

Chronic fatigue syndrome (CFS) and autism spectrum disorder (ASD) share common clinical features including immune dysregulation, increased oxidative stress, increased expression of proinflammatory cytokines and chemokines, mitochondrial dysfunction and chronic active microbial infections suggesting an underlying immune deficiency may be involved in subgroups of CFS and ASD. We recently demonstrated the first direct isolation of an infectious gammaretrovirus, XMRV, from the blood of CFS patients. We have developed quantitative assays to detect XMRV replication and infection in cell culture. Moreover, we found evidence of XMRV infection in >85% of more than 200 CFS patients tested to date. These data implicate a role for XMRV infection in the pathogenesis of CFS. Because of the clinical similarities of CFS and ASD, we hypothesized that XMRV infection may also be detected in subgroups of ASD. This presentation will update the status of XMRV research, show evidence of XMRV infection in ASD and discuss the implications of XMRV infection in the pathogenesis of neuroimmune disease including ASD.

Funny that the abstract promises to mention “evidence of XMRV infection in ASD” while leaving out any mention of the fact that XMRV is found in a percentage of healthy controls as well. (Aside from the WPI’s study, here’s a Japanese one that discovered the same thing.) Given this, I might expect that there’s evidence of XMRV infection in people with anemia, bipolar disorder, acne, a slight cough, myopia, etc. But because CFS patients and ASD patients share some symptoms, Mikovits is presenting at an antivax autism conference on the hypothesis — I see no study listed here that will be presented — that XMRV is involved.

CFS also shares symptoms with fibromyalgia, lupus, MS, and many other illnesses. Can we expect to see Mikovits presenting at conferences for all these diseases, sharing her speculation that XMRV is involved with all of them as well? Or has she simply identified another vulnerable, gullible population on which to push her extraordinarily premature agenda?

I wrote to the WPI this week about my concerns. As of this post, I have not received a reply. At the moment, therefore, I’m not seeing anything here to be positive about. If Mikovits is so eager to connect her research to a dangerous and fallacious area of “investigation,” my already iffy feelings about the WPI and the future of XMRV and CFS have plunged even further towards total pessimism.

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Weekend sendoff: TMI?

VaccineWhat an interesting week for me. I said that I would talk about Monday’s post from a more personal viewpoint today, and based on the comments on that post (about which more in a bit), I’d like to disclose my personal experience with HPV, cervical cancer, and critical thinking.

I’m one of those women who might well have benefited from the Gardasil vaccine. My HPV infection was not short-lived, and was associated with cervical cancer. After my initial abnormal Pap smear, I underwent numerous colposcopies and biopsies over the course of a year. I finally developed cancerous cells, and had to undergo LEEP to get rid of them. This was not due to a weak immune system. During my bout with active Graves’, I developed a chronically high white blood cell count, which persists to this day; additionally, findings show that people with CFS have upregulated immune systems. In other words, despite my illness, my immune system actually works better than most people’s — but my HPV strain was stronger. I acquired it in a monogamous relationship, after we’d gotten tested for STDs. My partner, who is now my husband, was told by two male doctors that those bumps on his penis weren’t anything to worry about, and by one male urologist that he’d already given me HPV so there was nothing more to do. (A female nurse practitioner, on the other hand, actually bothered to treat him.)

So does my personal experience invalidate my position on HPV vaccination? Yes, it would if I’d reacted to it the way the crazies do, and said “This is my personal experience, therefore I am convinced, and I’ll make up the science if I have to in order to convince everyone else.” During the course of my treatment, Gardasil was being evaluated by the FDA. Naturally I was very interested to hear about this, even though I was not a candidate for it. I read about it and discussed it with doctors whom I respect. I’ve continued to read about it to this day. I might not have had the most skeptical viewpoint at the time, but I do now, and my position still hasn’t changed: If I had a child, I would want to have him or her vaccinated against HPV. I understand the problem better than many because of my experience, but it’s the (valid) science that has made up my mind. If that science were eventually to show different findings, then I would investigate again and possibly re-evaluate my position.

One way it’s easy to tell that someone is trolling rather than actually presenting ideas for discussion is that he will bring up unrelated issues, and then accuse you of evading those issues when you choose not to take the bait. I do not pretend to be any kind of expert in the medical or biological sciences. I will never write a blog post explaining the medicine behind – well, anything, including my own conditions, except as far as my layperson’s understanding goes. My understanding is pretty good, if I may say so, but still, I am not a biological scientist or a science writer.

In my post on Monday, I wrote about the deceit and the delusion that are hallmarks of the conspiracy theorist, and in the comments, I was rewarded with several excellent examples of this. First, an antivax conspiracy theorist linked to various sites that hold no authority whatsoever, one of which provided a perfect primer for how misinformation is invented and disseminated. That person further attempted to press me into a debate on vaccinations. Why on earth would I want to debate someone who has already proven that he will stoop to lying to make his point? Also, the antivax looneybait is tempting, but tired, and has been disproven often and well enough by much more qualified people, that it’s a waste of time for me to regurgitate that proof at the whim of someone whose mind is already made up. My point was and still is the lack of and disrespect for critical thinking that lead to conspiracy theories endangering public health.

Meanwhile, Heidi’s comments became a perfect example of Poe’s Law, which was coined on a Christian discussion forum and goes like this:

Without a winking smiley or other blatant display of humor, it is impossible to create a parody of Fundamentalism that SOMEONE won’t mistake for the real thing.

Heidi is actually an awesome skeptic gal whose comment nicely illustrated how Poe’s Law can apply to many extremist points of view, not just religious. Smart people commented either here or privately to me elsewhere, conveying their distaste with Heidi and/or her statements. And rightly so! I don’t blame the people who bought it: of course anyone who took that position for real should be vilified. That it was plausible her absolutely ridiculous point of view could be for real confirms that there are, in fact, beliefs out there that are just as fucking crazy, or far more so. And what does it say about a movement that someone who allegedly holds such a repugnant opinion is so easily believed to be an adherent?

One last, “non-partisan” thought on this. My little blog here dreams of aspiring to one day being a blip on the landscape. I love working on it and I truly appreciate every single person reading this right now, even those who disagree with me, but you are a…let’s be kind and call it an “exclusive” bunch. The fact that even I couldn’t write a piddling post of this nature without attracting a (proportional) amount of disagreement is quite the reminder to me of just how widespread and rancorous this debate has become. I don’t think I would have gotten the same kind of comments if I’d gone after Holocaust deniers or even the 9/11 wackadoos.

Well, I’ve had a lot of fun and also learned a lot. I feel like I should send you off with something relevant, so here is a Bad Astronomer post with a short talk by Dr. Joseph Albietz on the subject of vaccination. But it’s Friday, so here’s also something totally irrelevant: a musical clip from the new Sherlock Holmes movie. Or something.

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