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An Exploration of How Functional Neurological Disorder Is Discussed on X (Twitter): Mixed Methods Study Using Social

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This summary is machine-generated.

Online discussions about Functional Neurological Disorder (FND) are often dominated by negative views and misinformation, particularly from users discussing long COVID and ME/CFS. This shapes public perception and impacts patient support for this misunderstood neurological condition.

Keywords:
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Area of Science:

  • Neurology
  • Social Media Analysis
  • Digital Health Communication

Background:

  • Functional Neurological Disorder (FND) is a common yet stigmatized neurological condition with disabling symptoms.
  • Misunderstanding of FND is exacerbated by conflation with conditions like long COVID.
  • Online platforms are key sources of information for patients, influencing their understanding and interactions.

Purpose of the Study:

  • To analyze and describe the discourse surrounding FND on the social media platform X (formerly Twitter).
  • To understand how FND is perceived and discussed within online communities.
  • To identify influential users and prevalent themes in FND-related social media conversations.

Main Methods:

  • Collected 1104 posts from 426 users over 2 months using FND-related search terms.
  • Employed quantitative descriptive and social network analyses to map user influence and communities.
  • Conducted content analysis to identify key discussion themes and topics.

Main Results:

  • Users discussing conditions outside FND (e.g., long COVID, ME/CFS) were more numerous than those focused on FND.
  • Social network analysis revealed distinct communities with limited interaction, and external communities showed greater outward influence.
  • A significant portion of influential users and highly viewed posts expressed anti-FND sentiments, with themes including conflict, deception, and mistreatment.

Conclusions:

  • The online narrative around FND is largely shaped by users dismissive of the condition, impacting patient support.
  • These findings highlight the challenges faced by individuals seeking understanding and help for FND.
  • The study provides a framework for analyzing online discourse surrounding other stigmatized health conditions.