JOHANNES RÖSCHE
Archives of Epilepsy - 2025;31(2):36-41
On December 18th, 2024, 24 papers evaluating social media posts concerning epilepsy and people living with it were found with a search on Web of Science and PubMed. One paper referred to Facebook, two to Instagram, one to Pinterest, two to Reddit, two to TikTok, three to Twitter ’X’, and 10 to YouTube. In three papers, the evaluation was not restricted to a special platform but rather to the language of the posts. Misinformation was often found. Perhaps the highest amount of misinformation was found on TikTok, with 55% of videos claiming to show an epileptic seizure rated as showing a psychogenic non-epileptic seizure. The highest amount of derogatory posts was found on Twitter ’X’ with 41% of all tweets. More than 40% of the papers focused on YouTube videos. Only four papers used standardized scores to evaluate the posts. According to these scores, only the reliability of videos about cannabidiol oil in the treatment of epilepsy was clearly more than modest. It is an open question how social media posts on epilepsy, or people living with it, should be evaluated.
