Page last updated at 10:37 GMT, Monday, 19 May 2008 11:37 UK

YouTube epilepsy videos condemned

Epileptic seizures take different forms

Epilepsy campaigners have criticised the posting of footage on the YouTube website of people having seizures.

The National Society for Epilepsy (NSE) said some videos - although not all - were voyeuristic, and the modern equivalent of the Victorian freak show.

The website features many clips of people having seizures, and others faking seizures - some have been watched by more than 70,000 people.

YouTube said it policed the site and removed inappropriate material.

Is it a good thing or a bad thing? I'm not sure
Dr Sallie Baxendale
Consultant neuropsychologist

The NSE is concerned that some footage on YouTube may have been posted without the consent of the person having a seizure.

Dr Sallie Baxendale, a consultant neuropsychologist with the NSE, said several videos were clearly filmed in the street on mobile phones.

However, she accepted that some footage had been taken during medical assessments, and shows the person undergoing an electroencephalogram to monitor brain waves.

"I don't think you can say 'don't put your seizures on'," she said.

"They should just ensure they make an informed decision. Once it's out there, it's hard to go back and they may come in for some abuse."

Strong comments

Dr Baxendale said the comments posted on YouTube about footage of seizures was usually sympathetic.

However, a minority of people suggested the person having the seizure may be possessed, and needed exorcism.

And she said viewers often react more harshly to footage of complex partial seizures, which do not look like most people's concept of a seizure, but can simply appear as though the person is making a face.

Dr Baxendale accepted that footage of epileptic seizures may play a role in helping to raise awareness of the condition.

She said: "We are not saying 'These shouldn't be out there, stop it now' but it's something to think about. Is it a good thing or a bad thing? I'm not sure."

A YouTube spokesman said: "YouTube has clear policies that prohibit inappropriate content on the site.

"Our community understands the rules and polices the site for inappropriate material.

"When users feel content is inappropriate they can flag it and our staff then review it as quickly as possible to see if it violates our terms of use.

"If users repeatedly break these rules we disable their accounts."

He added that anyone who feels their privacy has been invaded can file a privacy notice by simply clicking on "Flag" underneath the video and going to "Infringes my rights - invades my privacy" on the drop down menu.

20 May 03 |  Medical notes

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