Tag Archives: ethics

The dream academy

When I was a kid, I wanted to be a parapsychologist. I thought that this meant a person who examines supernatural claims and tries to find psychological or other scientific explanations for them. When I saw Ghostbusters at the age of 11, I realized I might be mistaken, and that if Dr. Peter Venkman was a parapsychologist, maybe I ought to rethink my career plans.

I continued to be enamored of the idea of scientifically testing or studying seemingly magical phenomena. In high school, this wound up intersecting perfectly with my fascination with dreams, when I picked up a copy of Exploring the World of Lucid Dreaming, by Stephen LaBerge, Ph.D. My experience with this book and LaBerge’s Lucidity Institute would become an early lesson in skeptical investigation.

A lucid dream is when you’re aware that you’re asleep while you’re in the dream. Not everyone has them, but they’re not that unusual. Carlos Castaneda wrote about them, and they feature in the movie Dreamscape (one of my favorites). My first lucid dream was “wake-initiated”: I was awake in a mauve-colored hotel room, and then suddenly finding myself in a lush green meadow made it obvious I was in a dream.

I found the experience amazing. My mind had broken the fourth wall of its nightly theatre and I was now a totally conscious participant inside an unconscious experience. How the hell was this possible? I was far less interested in the supposed mystical or healing properties of these dreams than the fact that the brain could allow such a thing to take place. So what attracted me to LaBerge’s book was that it offered step-by-step and sensible — not New Agey –  instructions on how to train yourself to have lucid dreams.

First, you learn to remember your dreams more clearly and more frequently. This means any time you wake up from a dream you must immediately write down as much as you can remember. Now, I’ve been an insomniac longer than I’ve been a skeptic, so frankly I hated this idea, since falling back to sleep was always so difficult. Also, the mechanism by which keeping this journal would increase dream recall wasn’t well explained, so I had no special expectation of a positive outcome. (A good skeptical position.)

But I did indeed find that forcing myself to keep the dream journal increased my dream recall, to a pretty remarkable extent in fact. So I embarked on the next steps, which involved training myself to do frequent “dream checks,” with the idea that the habit would continue into dreaming, where my dream check would fail and I would become lucid.

In the end, I didn’t have much success. I didn’t stick with the dream journal too well and, despite the notices my roommate and I plastered to our walls reminding us to check “ARE YOU DREAMING,” I was never able to induce a lucid dream. But I joined the Lucidity Institute so I could read their newsletter about lucky people who had become proficient at this technique, and the different studies that were done with these “oneironauts,” as LaBerge termed them. The study subject’s eye movements were recorded, and at the moment of entering a lucid dream he would perform a certain eye movement to signal this to the researcher, and then begin whatever experiment he was supposed to do in the dream.

Next: A rip-off by any other name…

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XMRV: Wait for the science

People with chronic fatigue syndrome want answers. We have had our lives, friends, partners, jobs, and prospects taken away for reasons that science can’t even explain yet. We have seen the misuse of CDC funds supposed to go to researching our illness and constantly face implications that we’re just malingerers or even mentally ill.

So it wasn’t surprising when the Whittemore Peterson Institute‘s study showing that XMRV was present in a large percentage of one cohort of CFS patients caused so much excitement and hope among patients. For one thing, the news helped validate the fact that CFS is a real illness. I heard many stories of patients whose friends or family members changed their negative views about CFS after this story came out. I had a similar experience myself. For another thing, this has galvanized the discussion among researchers about whether there might be a treatment or even a cure.

I write a lot about how chronically ill people need to remain critical thinkers. Usually I’m referring to alternative medicine, but this applies to science-based treatments as well. I’m concerned right now about what seems to be a giant logical leap by many, many CFS patients from this single study to the notion that XMRV is absolutely the smoking gun behind CFS. They are asking about when they can get tested and treated. Some are even looking into anti-retroviral medications already.

The fact is, this single study has not been either replicated or corroborated yet. In fact, a study done in the UK showed no correlation between CFS and XMRV, although there are some questions about that study due to the involvement of Dr. Simon Wesseley, who has maintained for years that CFS is a psychological illness. But even those questions come into question, and so the controversy continues. What is not controversial but is a plain fact is that so far, the WPI study is the only one showing a high incidence of the XMRV retrovirus in a relatively small cohort of CFS patients.

I’m worried that patients are leaping onto the XMRV bandwagon before the science is anywhere close to verifying not only the presence of the retrovirus in CFS patients, but even whether it can be treated at all. It seems to me that since we’ve been relegated to trying alternative and even fringe treatments if we want to find relief, the idea of a science-based answer is so attractive that the actual scientific process is being ignored.

And it doesn’t help at all that the CFIDS Association, which should ideally provide balanced coverage of issues related to ME/CFS/CFIDS, seems to be encouraging this mindset. A recent public note on their Facebook page lists resources for obtaining XMRV tests. All of them cost between $300 and $400 and none of them are reimbursable by insurance. The note does include quoted caveats by three CFS experts:

Dr. David Bell: “I am reluctant to suggest to anyone that they spend big bucks for a commercial test now. We do not know if a particular test is accurate, and even if it is accurate we do not know what it means, and even if we did know what it meant we would not know what to do with it. I would be patient. Answers will start flowing soon, so stay tuned!”

Dr. Nancy Klimas: “Don’t rush to get the test. Why, because you’re not going to act on that test quite yet. The knowledge of being positive is not going to get you an antiviral prescription from anyone right now because we don’t know which one to give and if it’s safe or if it’s toxic….If you knew your status today it really wouldn’t change anything.”

Dr. Lucinda Bateman: “It’s definitely anyone’s prerogative to do what they want in terms of testing… I think it will not be long before we have local access to the lab test that will have been tested, perfected and validated and covered by insurance. The second most important thing is that we don’t know what to do with the information yet.”

I appreciate the comments that no one knows what to do with the information yet. But what about the information that the WPI’s study has not even been replicated or corroborated yet? Shouldn’t “CFS experts,” of all people, be reminding patients of this fact? There is no mention at all that medical science doesn’t accept conclusions based on one single study.

Additionally, I was particularly interested in this bit of information (emphasis mine):

The second test to market is offered [sic] VIP Diagnostics (www.VIPdx.com), a Nevada company owned by the Whittemore family….The website discloses that the tests have not been approved by FDA for diagnostic purposes and that medical expertise is required for test interpretation. VIP Dx will pay a royalty to WPI for each test it performs, according to a press release issued on Jan. 14, 2010.

So the family affiliated with the institute that performed the study owns a lab that performs these very expensive, non-FDA-approved tests, each of which provides a bonus to the institute. Did I get that right? And does this seem weird to anyone else? I want to make it clear I’m not alleging any wrongdoing, and I’m glad that this information is openly and easily available. Also, money that goes to the institute is (hopefully) likely to fund further research, which I don’t argue with. But the squeezing of this money out of vulnerable, credible CFS patients who are excited about the one XMRV study the institute has produced leaves me with a very bad taste in my mouth.

As soon as the XMRV news broke, I encouraged cautious and critical thinking about it. At this point I’m not just encouraging it; I’m begging for it. The de facto acceptance of this retrovirus as the cause of CFS by both patients and advocacy groups is worrisome, and the quick cropping-up of expensive and as yet pointless tests smacks of patient exploitation to me. Don’t get me wrong: I am not arguing that there is nothing to the XMRV study. I don’t have the medical expertise, and that isn’t my point. If further study and research does show that XMRV is a cause of CFS and treating it can help patients recover, I will be just as thrilled as everyone else.

But not until then.

(image via xkcd)

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You’re an interpreter? Do you know Braille?

I’ve been thinking about skepticism and ethics. That train of thought led me back to the code of ethics I followed as a professional sign language interpreter, which led me to reminisce. While I do have plans to write about the first thing, I thought I’d just share a few of those recollections.

The theme of this post is “stupid things people say to interpreters.” Although occasionally things like these are said maliciously, usually they come from well meaning people who are ignorant of – or nervous about – deaf people. It’s of tantamount importance to stay friendly, helpful, and polite. Hearing clients often relate to a hearing interpreter more than to the deaf client, which is why they ask some of these questions, but they can also connect our behavior with that of the client. So if an interpreter is rude or unhelpful, a hearing client may associate that with the deaf client or even all deaf people. (Seriously.)

Thus, a lot of my time as an interpreter included fielding these stupid things people said to me without offending them, much as skeptics often have to educate people, such as loved ones, without alienating them. In both cases you have to do some culture-bridging. Here’s a few examples, and while I may have changed a few identifying details, I swear this is all true. In addition, some of them are extremely common among all interpreters.

Interpreting for Todd Parr in 2005

Question: “Do you know Braille?”
Mental response: Do you know anything?
Actual response: “Braille is used by blind people.” If further confusion results: “Deaf people don’t need a special way to read unless they’re also blind.”

When I was a student, an experienced interpreter once told me she got asked this all the time. I thought she had to be putting me on. Then I started working as an interpreter. Hoo boy.

Question: How much can he hear?/Is he doing his homework?/Can he lip-read?/Does he understand?/etc.
Mental response: What am I, his mother?
Actual response: “I don’t know, but if you want to ask him, I’d be happy to interpret that.”

I take care to say this pleasantly, with politeness and sincerity, and it almost always gets the point across. The one time it went south, I was taken out of a class after saying it to the jackhole of a teacher who asked me something along those lines, and didn’t like the answer. As working in his class entailed having to interpret while he described how lovely his turds were, it wasn’t much of a loss.

Comment: (After a mistake or a joke) “I don’t want you to interpret that.”
Mental response: Then don’t fucking say it!
Actual response: Interpret “I don’t want you to interpret that” to the deaf client. After that, it really depends on the situation.

Question: (waves hands around randomly) What did I just say?
Mental response: Amazing. You hit on the exact sign for “I’m a moron.”
Actual response: Depending on my relationship with people, I’ve gotten away with “You said ‘I don’t know any sign language.’” If I don’t know them well enough to make a pointed joke, I usually let a smile and a shrug answer for me.

Question: Why does he look at you and not me when I talk to him?
Mental response: Were you born this way or was it traumatic brain injury?
Actual response, from the deaf client: “BECAUSE I’M DEAF!”

This came from the worst hearing client I have ever worked for. In this case I was lucky: I only witnessed the comment while my partner was the one interpreting. Lucky because I needed all my mental power to focus on not busting out laughing, which I probably wouldn’t have avoided had I been obliged to interpret all that.

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