YouTube receives Migraine-Community warning strike

... which will expire on release of my migraine video. Or does YouTube really think that my migraine video can cause migraines?

Yesterday, I got this email.

Really, had I received a Community Guidelines warning strike, which will expire in six months or is this SPAM? I looked for my video and, well it's not SPAM, I saw this.

My video has really been disabled for violation of the YouTube Community Guidelines. If only I could see any violation.

The video showed a simulated visual hallucination, a zigzag pattern, which you can see in the screenshot below (but not on YouTube anymore, but ok, you already knew that by now) right above the "I'm Feeling Lucky" buttom. Well, you wouldn't feel lucky, if you see this flickering zigzag pattern in real life. You would feel bad. You'd suffer from migraines and this hallucination is just the beginning, the so-called aura phase, of an attack.

This animation is was a neural network simulation, based on an article in a peer reviewed scientific journal from 2000. It translates endogenous neural activity in two overlapping cortical feature maps (called retinotopy and orientation preference map) into a visual percept that is perceived as a visual hallucination. Migraine provides us with a direct window into cortical organization—A window through that you can literally see how your brain works. Fascinating stuff, I'd love to explain this a little longer, if only I were not too busy getting my video back online. 

The video has received much positive feedback from both in the scientific community and from migraine sufferers.

For example, in 2000, I sent the paper to Oliver Sacks who answered that "it would be very worthwhile getting some expert [...] self-observers to examine their own zigzag to see if they can pick up such a phenomenon". I received his letter on my birthday.

Oliver Sacks is certaily one of the best science communicators—with neurological diseases being his particular subject—who bridges the world of science and the larger public. I new, I also had to reach out to the public, if I wanted to get, as suggested, contact to such "expert [...] self-obesevers". That year, in 2000, I created my first migraine website that turned later into the Migraine Aura Foundation. There, I presented the original animation, that was also linked from the paper. The link in the paper is not valid anymore, but you can see the original animation (without retinotopic mapping) on Scholarpedia.

In 2000, there was no YouTube or any other free video-sharing website that could have given me the opportunity to have a permanent link to the animation. Well, it turns out that even YouTube links are not permanent. Just wait until you get one Community Guidelines warning strike and the movie suddenly disappears for no obvious reason. And it is this what makes me mad, the many now useless links to my video, including wikipedia articles. I don't want to start all over again, and re-link to this video in a new place.  

Well, is there no obvious reason at all why YouTube disabled my video? A hint might be in the emails and comments that I get quite frequently. This one came just a few hours after the email from YouTube.

And also most of the 177 comments, from the over 40000 views the video got so far, wrote something like that. 

For example: 

hello, this video is eerie to watch because I've only ever seen these in my mind :) I have had migraine aura for about 12 years, after being a frequent (2x per week) migraine sufferer throughout childhood. My phenomena are in color and look like those crystal growth videos where polarized light brings out rainbows in the material. There are some other videos that do a decent job evoking the color version. but THIS video nails the look of angular lines and the ridged texture. Great job!

Could it be that YouTube really thought that my migraine video can cause migraines? Well, I had a warning right at the start on my video: 

The only thing that would have caused an unpleasant feeling is the flickering zigzags. Such scintillating patterns people see all over in YouTube videos. My video had at least a warning. More important, it educated people about the connection to migraine, that is, it did until yesterday.

Let us give YouTube a Migraine-Community warning strike that we want this video back online! Please tweet this and share it on Facebook!

Read on the next post, it will get even better! 

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