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Abstract Introduction To best support a rare-disease community, it is imperative to understand the unique symptoms and challenges associated with their condition. In recent years, the experience of “brain fog” has been discussed across sleep-disorder communities, including narcolepsy and idiopathic hypersomnia (IH); however, the term “brain fog” is a vague descriptor that might represent several experiences. Here, we explored experiences with brain fog across sleep communities. The primary goal was to identify cognitive challenges associated with brain fog. Impacts on daily living were also characterized. Methods We analyzed conversations in 2 online sleep disorder communities: narcolepsy (a private Facebook group, PWN4PWN; and a public subreddit, r/narcolepsy) and IH (a public subreddit, r/idiopathichypersomnia). Posts/comments were explored using a natural language processing (NLP) engine designed to recognize and categorize clinical language on social media. Conversations mentioning brain fog across communities were isolated for analysis. Odds ratios were calculated to identify clinical concepts associated with brain fog conversations (vs other conversations). Last, conversations were subjected to topic modeling, a process which reveals common conversational themes in community discussions. Results Narcolepsy and IH communities contributed 355,028 posts/comments from 2011-2023. The NLP engine extracted concept mentions across communities. Brain fog mentions experienced the largest increase from 2014-2017. The concept most associated with brain fog was “memory impairment”. Another strongly associated cognitive concept included “inattention”. Sleep-related concepts (e.g., “difficulty sleeping”) were also associated with brain fog. Topic analysis showed converging support for these findings by identifying topics such as “memory issues” and “ADHD”. Topics related to daily living included “school” and “workplace”. Conclusion The experience of brain fog is shared across multiple sleep communities. In both narcolepsy and IH groups, brain fog experiences preceded the COVID-19 pandemic, with a substantial increase in mentions before 2020. Brain fog conversations were significantly associated with memory and attention difficulties, similar to other disorders. The association with sleep-related concepts appears to be unique in this patient group. These findings suggest brain fog may impact certain mental processes more than others and may be exacerbated by poor sleep quality. The daily impact of brain fog was illustrated by conversations centering around school and workplace experiences. Support (if any)
Flurie et al. (Sat,) studied this question.