Friday, May 19, 2017

It's late at night....

It’s March 2015 and I’m still here at my computer at a ridiculous hour of the night. I’m using YouTube to view a science documentary which was produced several years ago. I’m looking at one of countless recordings of a popular documentary which people have uploaded over the years. The subject of the documentary is a young man presented as a savant displaying many amazing talents, which are attributed to a mysterious brain condition related to epilepsy and autism. I’m sitting here at this late hour because science is one of my interests, but I’m not watching this made-for-television film as a casual viewer. I’m viewing the credits at the end of the documentary because I feel that I need to check something. Close to the end of the documentary there are a few frames showing the man who is the subject of the documentary lying down on what looks like a grey slab designed to go into an MRI machine. After that there are slightly gruesome shots of moving images of a head and brain scan beside images of a man’s face from two odd angles, one an upside-down profile. I notice that the face in the inverted profile appears not to be the face of the man featured in the documentary, with the face’s hooked nose, receding chin and large ears. Holding a mirror to a frozen video frame confirms that it’s not his face. I know that none of the fMRI studies of this man that I’m aware of would have been conducted during the period of the filming of this documentary. This mismatched face is just one of countless details in this story which don’t ring true, but this isn’t the detail that I’m looking out for.

Next in the documentary a likeable doctor/expert with a grandfatherly face says something inspiring, and then there’s a shot of the star of the film sitting in a large and futuristically white and shiny building, with an artsy visual effect accompanying a voice-over of the star saying something inspiring, then it’s back to the expert, Dr Darold Treffert who has written extensively on the subject of autistic savants, saying more inspiring words about the future direction of research, and then there’s the bit that I’m looking for – the closing credits. As they zoom up the screen I struggle to pause the images in time to check the names of some neuroscientists among those in the credits, and I also spot the name of one of the world’s most accomplished competitors in memory sport, Dominic O’Brien. It seems odd that his name should be listed here, because I know what Mr O’Brien looks like and I swear that I never saw him making an appearance in this television documentary, but the appearance of his name in the credits does back up what I’ve read about this documentary – that a critical interview with this memory sport champion was filmed but was left out of the final product. That’s interesting but I’m really interested in what the credits have to say about the associate producers of the film, because I have read that the publicist of the man who is the subject of the film was also an associate producer in the documentary project, which seems like a conflict of interest to me. I had expected more of a science documentary, but perhaps that just shows that I’m a bit naïve. The swiftly ascending names of members of the crew are suddenly squashed beyond recognition, as the screen showing the recording of the Channel 5 broadcast of the documentary is compressed to make space for a TV channel promo for an upcoming TV show about “the woman with the 14 stone tumor”. I can just make out that there were four names under the heading “Associate Producer” but I can only barely perceive the name of the publicist because I already know what to look for as a result of fact checking at the IMDb database. A moment later the credits are readable again, just in time to make the names of the documentary director and producer legible, and then I’m struck by a thought. Is it just a coincidence that that particular potentially controversial part of the credits is illegible? My late-night idea seems like some far-fetched conspiracy theory, but it does fit nicely with a detail that I’ve noticed about the autobiographical book written by the star of the documentary. In the UK edition of his book I cannot find the name of his publicist, but in the later US edition the author Daniel Tammet thanks his publicist by name in the acknowledgements section of his book. The Channel 5 broadcast of this documentary would have been broadcast in the UK and the publicist’s name is illegible in the credits, while the US version of the documentary, released under the title Brainman and broadcast on the Science Channel, has the name of the publicist shown as clear as day in credits ascending the screen at a leisurely pace. It would appear that perhaps there was a lack of motivation to publicise the role of the publicist to British viewers and readers. Was there any intention to hide any conflict of interest? I can’t help wondering. Who would have thought that watching the credits of a dated science documentary in the small hours would be so thought provoking?

Perhaps you might be wondering if all of these details about a publicist’s role are of any real consequence. I think they could be, because it is the Channel 5 broadcast of that documentary, with the UK title The Boy with the Incredible Brain, and the UK edition of the autobiography Born on a Blue Day which were cited as sources of information by the authors of one of the most influential published science journal papers about the man in the documentary. This journal paper was published a couple of years after the documentary was first broadcast. Some of the authors of this influential research paper from the University of Cambridge were involved with, and were filmed and shown in the documentary, but they could conceivably have been unaware that the publicist of their study subject was also involved in that documentary. This group of brain sciences researchers certainly appear to have had many deficiencies in their background knowledge of the person they wrote two research papers about. Neither of those published papers noted that the subject, Daniel Tammet, had changed his surname from Corney in the year 2001 and neither of the papers mentioned that Daniel Corney had been a competitor in the World Memory Championships in the years 1999 and 2000. Neither paper mentioned that Tammet had already been one of the subjects in a study of “superior memorizers” which was published in the journal Nature Neuroscience in the new year period of 2002-2003, in which a team of memory researchers found that the superior memorizers were superior due to their training using well-known memory techniques rather than any structural peculiarity of their brains. I’m happy to assume that the Cambridge team didn’t mention these elements of Daniel Tammet’s life history in their journal papers because they were unaware of them, and I’m also happy to assume that had they known about these biographical facts they would not have been so keen to label Mr Tammet as an autistic synaesthete savant.

A team of English researchers led by a professor who is internationally recognized as an expert in the area of autism appear to have made some embarrassing oversights in their studies of one research participant who is famous for having an exceptional memory. This is interesting, but is it anything to lose sleep over? Even the most strident advocates of a scientific world view acknowledge that science isn’t perfect and neither are scientists. Science is supposed to be a process in which errors are made but progress in the wrong direction is corrected in the long run by the criticism and scrutiny of other scientists.

That’s a nice idea, and I wish I could believe in it, but all these years later in 2017 I’m still waiting for that correction to the fanciful story of Daniel Tammet to ring out from the heart of the brain sciences community. Instead, all that I’ve found is largely-ignored corrections from people who are experts but are definitely not scientists, a mountain of breathless coverage of Tammet by mass media sources (including the world’s most prestigious newspapers and top-rating current affairs television shows), and an arc of influence of Tammet and his life story that spans the globe and has lasted over a decade, leaving it’s mark on popular culture and the brain sciences alike. This looks like a story about the conquest of science by showbiz values and commercial interests. This is not the way science is supposed to work. Science has been made to look a fool. Back in 2015 I found this story fascinating for what it revealed about the sociological dimension of contemporary psychology and neuroscience and problems that needed fixing, but from the viewpoint of April 2017 it looks like the opportunity to redeem the image of science is long-gone. Populist movements in the world’s most powerful nations are challenging the authority of science and other social institutions that are described as elites. An anti-intellectual President is doing his best to slash the funding and influence of science in the United States.

From this point we seem to have two choices; we could defend science by saying the same flattering things that we’ve always been saying about science, or we could turn around and have a good, hard look at the many things that are wrong with science. Scientists could own up to stupidly and wastefully running up too many blind alleys of improbable theories in the past. Scientists could acknowledge (with red faces) that some important areas of science are markedly influenced by popular culture and commercial interests. Scientists and journalists alike could put their hands up and own up to publishing crap and later failing to retract crap. I believe you will find nor read no more instructive example of the sciences of the human mind screwing up than the “incredible” story of Daniel Tammet. How did this debacle happen? Read the book.


At 360 pages and over 148,000 words, the 2017 edition is almost double previous editions, with many added chapters focusing on individuals whose personal stories add to our understanding of the Tammet phenomenon: researchers who have studied and published about Tammet, memory champions and record-breakers whose achievements far exceed Tammet's, and individuals who have claimed fame as acquired savants with stories that echo Tammet's incredible story. A big story about science going wrong just got bigger!


by Lili Marlene






Friday, May 12, 2017

Why are we waiting....for a cure for Chronic Fatigue Syndrome?


"Today is the 25th anniversary of May 12th International Awareness Day for Chronic Immunological and Neurological Diseases. They include Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity / Environmental Sensitivities."

https://www.facebook.com/may12th.awareness

I do not have any of these diseases, but I know enough to be sure that these people are not spending their lives in and out of beds, foregoing careers, livelihoods, recreational activities, travel, family life, for some the opportunity to marry and have kids, some for decades, just for a lark. I ask you, in the entire history of psychiatry or medicine, has there ever been such a phenomenon? Do perfectly fine people just give up on life for no apparent reason? Even the most badly affected depressives often manage to lead busy lives.

I'm furious about they way that science and medicine and governments have defamed and neglected and ignored these people! Read the things linked to below, and I'm sure you will feel the same way. Most people with CFS and fibromyalgia are women. Most doctors are men. Is misogyny a factor? Of course it is! There's a group of researchers who deserve to lose their professions and jobs.


http://theconversation.com/how-a-study-about-chronic-fatigue-syndrome-was-doctored-adding-to-pain-and-stigma-74890

https://jcoynester.wordpress.com/2017/05/11/patients-writing-about-their-health-condition-were-abused-by-a-peer-reviewer-and-silenced-by-bmj/