Epilepsy as a door between worlds

There’s a wonderful anthropology study on beliefs about epilepsy among the Guaraní people in Bolivia in the latest Epilepsy and Behavior.

The Guaraní believe that people with recurrent seizures are a gateway between the worlds of life and death.

Among the Guaraní, epilepsy is called mano-mano, which literally means “die-die” and refers to the concept of death with a notion of frequency (die several times) and also of being in a constant passage between life and death. In other terms, this word means always being on the border between life and death, reflecting the fact that mano-mano produces a constant interruption of life or a “partial death.”…

In fact, the expression mano-mano is meaningful. It refers to the idea of a round trip between life and death. This concept addresses the loss of consciousness and shows that epilepsy is recognized mostly in terms of generalized seizures. The uncertain state between life and death is seen as a kind of “third possible condition” for a human being, a state that generates hesitation over what attitude to hold. PWE [people with epilepsy] are omano-mano-vae, the “undeads,” different from the other members of the community and considered both as victims of this life–death relationship and as enablers of the meeting of these two worlds…

The representation of epilepsy as a state of human being and the perception of this in a vision that involves the entire community allow an interpretation of Guaraní attitudes toward PWE [people with epilepsy]. Guaraní PWE are rarely condemned, misjudged, or isolated as in other cultures. Apparently, PWE do not represent a threat to the Guaraní, who seem to hold the attitude of helping and protecting PWE. As noted, the restrictions and prohibitions cited by the Guaraní appear to derive from the need to take care of PWE, as heavy work, traveling alone, and being involved in problems are believed to worsen the condition or trigger seizures in PWE.

It’s worth noting that while their perception of people with epilepsy is generally positive, several of the people interview gave advice about avoiding contact between affected people and children or pregnant women.

As the researchers note this raises questions “that could be related to a belief that was not mentioned: possible transmission of the disease to those who are considered the weakest and most defenseless in the community.”

However, their general outlook is markedly positive in light of widespread beliefs about epilepsy being the results of evil spirits or a divine punishment.

In contrast, the Guaraní most frequently cited epilepsy as being caused by a “failure to observe the Yekuaku, a fasting period linked to special events”.
 

Link to locked anthropology study.

A profession with “no” at its core

I’ve just finished Randy Olson’s “Don’t be Such a Scientist: Talking Substance in an age of style” (after loving his article in New Scientist, “Top five tips for communicating science “). Olson is a marine biologist turned filmmaker, so knows the world of science from the inside, and from the outside perspective.

This book is 75% solid gold – absolutely essential perspective for scientists who want to communicate outside of their specialism. But it is also 25% misleading and elitistic simplification. At heart, Randy Olson’s message as a populariser ends up pandering to a mistaken belief in scientific exceptionalism – that what scientists do and who scientists are is so beyond the ken of the rest of the population that it cannot be conveyed to them, that we have to use a pound of silly songs and fart jokes to make the public to swallow an ounce of important information. Sorry, Randy, but when you underestimate the public taste you end up demeaning it.

Part of the 75% I loved is Olson’s perspective on the value of acting and improv classes for science communicators. This something close to my heart, after I had my own mind-blowing experience of improv training. An essential – some would say the essential – of improv is to avoid negating your fellow improvisers suggestions. Whatever happens, improvisers are taught to accept and build – using a “yes and” mindset instead of a “no but” one. This lends itself to humour and creativity. Science, on the other hand, tends to downplay “yes and” at the favour of “no but”, lending itself to rigour and certainty, at the risk of cynicism and myopia. Olson puts this particularly well in the following passage:

The entire profession of science has at its core a single word, and that word is “no”. Science is a process not of affirming ideas but of attempting to falsify ideas in the search for truth. This is what a hypothesis is – an idea that can be tested and possibly falsified and rejected.
When you give a scientist a paper, he or she reads it with the assumption that the writer is guilty of being wrong until proven innocent. The writers proves his or her innocence by either presenting data or citing sources. With each statement made in the paper, the scientist reading it says “I’m not sure I believe this.” As the author presents graphs and tables of data and cites sources, the good critical scientist attempts to falsify what is being said.
Eventually, after the scientist has examined the data, looked up the cited sources and found that in fact, despite considerable effort, the hypothesis presented cannot be falsfied – only then does the scientist finally start to relax and a bit and say, “Well, okay, I think I can probably live with this.”
Tough buisness. It really is. As I waded through my first decade of rejection in Hollywood as a filmmaker, people would ask me whether I found the rejection hurtful or depressing. And I would respond, “Are you shitting me? Do you have any idea what it’s like to deal with the rejection of scientists? Hollywood folks reject things on the basis of the idea that ‘it just didn’t grab me,’ and they can’t even articulate the reason for their decision. When scientists reject you they hit you with a stack of data and sources that are the basis for it. That’s the sort of specific, substantive rejection that truly hurts (p128-129)

Link to page for Randy Olson’s “Don’t be such a scientist”

I wrote about improv for Prospect magazine, here

The death of atypical antipsychotics

The British Journal of Psychiatry has just published the latest in a long line of studies to find that the newer ‘atypical’ or ‘second generation’ antipsychotic drugs are barely better than the old style medications and has a stinging editorial that accompanies the piece calling out years of drug company marketing spun as an illusory advance in medical science.

Unfortunately both are locked (after all, you’d just worry yourself with all those facts) but here is the last paragraph of the editorial. It leaves no ass unkicked.

In creating successive new classes of antipsychotics over the years, the industry has helped develop a broader range of different drugs with different side-effect profiles and potencies, and possibly an increased chance of finding a drug to suit each of our patients. But the price of doing this has been considerable – in 2003 the cost of antipsychotics in the USA equalled the cost of paying all their psychiatrists.

The story of the atypicals and the SGAs [‘second-generation antipsychotics’] is not the story of clinical discovery and progress; it is the story of fabricated classes, money and marketing. The study published today is a small but important piece of the jigsaw completing a picture that undermines any clinical or scientific confidence in these classes.

With the industry reputation damaged by evidence of selective publishing and its deleterious effects, and the recent claims that trials of at least one of the new atypicals have been knowingly ‘buried’, it will take a great deal for psychiatrists to be persuaded that the next new discovery of a drug or a class will be anything more than a cynical tactic to generate profit. In the meantime, perhaps we can drop the atypical, second-generation, brand new and very expensive labels: they are all just plain antipsychotics.

 

Link to locked editorial ‘The rise and fall of the atypical antipsychotics’.

The New York Times wees itself in public

The New York Times has just pissed its neuroscientific pants in public and is now running round the streets announcing the fact in an op-ed that could as easily been titled ‘Smell my wee!’

The piece is written by Martin Lindström, famous for writing the ‘neuromarketing’ best-seller Buyology, but infamous for not making any of his data or studies public.

In fact, despite constantly mentioning the astounding conclusions from numerous brain imaging studies he was run, not one has appeared in the scientific literature.

But even without knowing about the reliability data or the quality of the analysis, it’s easy to see that he’s talking through his hat because the interpretations are so over-the-top that they are actually beyond what is possible with brain imaging science.

The piece is full of nonsense of various sorts.

I carried out an fMRI experiment to find out whether iPhones were really, truly addictive…

In each instance, the results showed activation in both the audio and visual cortices of the subjects’ brains. In other words, when they were exposed to the video, our subjects’ brains didn’t just see the vibrating iPhone, they “heard” it, too; and when they were exposed to the audio, they also “saw” it. This powerful cross-sensory phenomenon is known as synesthesia.

Actually, this is known as bullshit because synesthesia is where a conscious sensory experience in one sensory domain produces a conscious experience in another.

In other words, synesthesia is defined by the experiences that someone has, not where brain activity shows up.

The fact that brain activity occurs in an area previously linked to a different function does not mean it is being used for that function or that the person is having a related conscious experience.

If this is not entirely clear, think of it like this. Imagine, for the first time in your life, you just heard the sound of a guitar being played as part of a pop song. You’d be a bit daft if every time you heard guitar chords you told people that the music must be a pop song. After all, there’s a guitar in it, right?

Clearly, this is ridiculous because the guitar is an instrument that appears in lots of musical styles but Lindström is doing the neuroscience equivalent of over-interpreting guitar sounds throughout his terrible article.

He starts going on about how activation in the insula, detected in his privately conducted otherwise unknown study, means the person is experiencing love for their iPhone because insula activity has previously been linked to love.

The trouble is, as neuroimaging researcher Russ Poldrack just pointed out, it is one of the most common brain areas that turns up in fMRI studies and appears in about a third of imaging studies no matter what is being studied. In other words, it’s linked to just about every experience and behaviour you can think of.

In fact, it is probably most famous, not for its association with love, but for its association with digust, but Lindstrom apparently decided to avoid this particular interpretation.

This is just one example among many and if you want a breakdown of why the article really is full of crap, I recommend neuroscientist Tal Yarkoni’s point-by-point analysis and facepalm jamboree.

In fact, the op-ed has annoyed so many people there is now a letter to the editor signed by just about every big name in fMRI research on its way to the New York Times in an attempt to open the windows and get rid of that uncomfortable smell.
 

Link to NYT pissing itself in public.
Link to Tal Yarkoni’s excellent mopping up exercise.