Monthly Archives: June 2010

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: But You Don’t Look Spammy

I’ve alluded previously to the resistance of chronic illness forums and communities to thinking skeptically or critically about treatments and medications. In the past I haven’t named any of them, because it’s not necessarily the fault of the forum posters who get positive benefits from those forums; often it’s the moderators.

I wrote my post about recognizing a quack and then decided to go back to butyoudontlooksick.com, the forum to which I was referring in my earlier post. Although I left that community for the reasons I’ve explained, my genuine desire to share what I think is a vital skill for chronically ill and disabled people got the better of me, and I started a thread including my post. The thread got some interesting  responses and I was looking forward to continuing the discussion.

Then it got locked “due to spam,” and when I privately contacted the appropriate moderator for clarification, I was ignored. Let me be clear that the rest of what I’m about to say is not directed at the forum posters and their positive contributions.

I’ve been thinking a lot about my topic of “Compassionate Skepticism,” which I proposed as a TAM paper and will be writing about more in a week or so. It’s about how skeptics can hopefully shift some of their assumptions and presumptions when dealing with people who have constant, chronic physical pain and cognitive dysfunction.

But you know what? Skeptics need to be met halfway. And this behavior is just half-assed. This is exactly why many skeptics simply write off those people as stupid. I don’t believe that to be true, but I can’t say I find this action particularly bright. To me it simply backs up my previous assertion that the moderators foster a warm ‘n’ fuzzy closed circle that excludes the controversial, even if that information could save someone’s life. As mentioned in my older post, previously that “controversy” was someone posting an article reporting the plain facts of a girl who died from eczema because her homeopath father wouldn’t treat her with conventional medicine. And now my attempt to encourage sick people to think critically is labelled spam, without even a word of explanation to me.

The last thing I wrote here was wondering whether I’m just preaching to the converted. Certainly getting called a spammer in return for reaching out in a friendly way to the possibly unconverted doesn’t improve my optimism on that score. I am really glad that at least a couple of people seemed to find the blog post beneficial. Obviously I’m not going to shut up here, or elsewhere. But I truly am done with that site altogether at this point. Management’s motto seems to be “Let’s pat each other on the head but never ever use that head.” And my apologies to all the forum members to whom none of this applies…but I can’t stomach it.

UPDATE: The thread has now been unlocked.

In other, much happier news, I am now a staff writer for AbleGamers. This is a website of the AbleGamers Foundation, whose mission is “to empower the disabled population to enjoy the digital revolution that is taking place in gaming.” The very first time I read those words, only a couple of months ago, I immediately knew I wanted to be involved somehow. You can read and/or listen to a great NPR interview to learn more, and you can also read my first story for the site. It’s not an easy road for them, as developers are far more interested in creating the next technological blockbuster than in adapting that blockbuster for a marginalized population. But as part of that population, I share the foundation’s optimism that positive changes can and will come.

That, by the way, accounts for this week’s missing blog post. In other news, last week Paul and I fostered a kitty and never let it be said I missed an opportunity to post cat photos. I won’t go into the circumstances as they’re kind of depressing and a lot of you already know about it anyway, but in the end we were able to save the life of an elder but wonderful cat, and transport her to another safe and loving foster home. If you should know anyone accessible to San Diego who might wish to provide a calm forever home for this lovely lady, please contact me. I send you off with Wynne (renamed by us, obviously):

Fourteen years old and so beautiful.

Like all Burmese, she loves exploring...

...and affection.

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Weekend sendoff: Preaching to the choir

My optimism about this blog waxes and wanes. Not my enthusiasm — I love working on it and have no intention of stopping. But like most skeptical bloggers and writers, I often wonder if I’m not just preaching to the converted here. I’ve known chronically ill skeptics who would not have been taken in by the quackery I discussed in my last post. And I’ve known chronically ill people who are 100% dedicated to alt-med, no matter how questionable.

Is there anyone left in the middle? Everything these days, from American politics to medical issues that have been needlessly politicized, seems to have polar opposites but no middle ground. I assume there is actually a middle, but I don’t know what they’re doing. Are they reading my blog and filing it away for future reference? Are they returning to the comfort of forums where all treatments are considered equal? When I write a post like Tuesday’s, which is obviously not aimed at people experienced with skeptical inquiry who don’t need the primer, I do try to publicize it on chronic illness forums and other places where I hope these “medical centrists” may exist. But I have no idea if it’s working.

I did see a thread belittling homeopathy on a forum where I once saw a thread cancelling any discussion of it, so that gladdened my tiny, mean little skeptical heart. I’m not claiming any credit; it was just nice to see.

In other news, although my fundraising efforts for the CFIDS Association must be considered a colossal failure, happily two wonderful gentlemen were kind enough to donate, and as such have earned the right for me to compose a (probably bad) sonnet about them. Derek Bartholomaus, of the Jenny McCarthy Body Count, and @Data_Jack — don’t think I’ve forgotten about you!

I send you off with an allegory for what I’d like to see happen: chronically ill skeptics and believers in CAM, natural enemies, coming together for a productive discussion. (Cuddles are optional.)

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