Introduction: FND in the Social Media Era
Functional neurological disorder (FND) sits at the intersection of neurology and psychiatry, challenging both clinicians and patients with its diverse presentations. In recent years, social media has emerged as a crucial arena for information, support, and debate around FND. This article summarizes a mixed-methods study that examined how FND is discussed on X (formerly Twitter), using social network analysis and content analysis to map who talks, who influences, and what themes dominate online conversations.
Why X Matters for FND Discourse
Twitter-like platforms shape health narratives by enabling rapid sharing, amplification of emotive content, and the formation of communities around illness experiences. For FND, which has long faced stigma and competing explanations, X provides a landscape where patients, professionals, and lay observers intersect. The study explored posts using terms such as “functional neurological disorder,” “FND,” “#FND,” and “conversion disorder,” capturing a snapshot of two months in 2024 and focusing on publicly available content with anonymized handling.
Methods at a Glance
The researchers combined three approaches: a quantitative description of posts and users, social network analysis to identify influencers and community structure, and qualitative content analysis to extract dominant topics and subthemes. Posts and user handles were coded for self-declared roles (patient, professional, organization) and associated illnesses when evident (FND, ME/CFS, COVID-19, etc.). The final dataset included 1,104 posts from 426 users, with a two-tier emphasis on conversational interactions (replies and reposts) and the content of original posts.
Key Findings: Who Shapes the FND Conversation?
The network analysis revealed two major communities. One cluster centers on long COVID and ME/CFS-related discussions that frequently engage with FND content, sometimes displaying anti-FND sentiment. A second, smaller but denser cluster comprises FND-focused users and professionals. Notably, influential voices in the broader conversation often come from individuals connected to illnesses outside FND, rather than from core FND professionals or organizations.
Among the top influencers, the study found that many central figures did not identify primarily as FND professionals. Instead, they included patients with long COVID or ME/CFS who showed high engagement and reach. This pattern suggests that audiences concerned with related chronic illnesses can significantly shape perceptions of FND, for better or worse.
Content Themes: From Conflict to Support
Qualitative analysis of the 1,104 posts uncovered six primary themes with multiple subthemes:
- Conflict: Debates over diagnosis validity, especially in the context of long COVID and ME/CFS; strong, sometimes adversarial language about FND care and research priorities.
- Deception: Perceptions of pseudoscience, gaslighting, and concerns that FND is a rebranding of hysteria or a deceitful medical approach.
- Mistreatment and Harm: Perceived overdiagnosis or misdiagnosis, gendered experiences of stigma, and online harassment of patients.
- Symptom Experience: Descriptions of lived experiences, coping strategies, and recovery narratives, often shared through art, blogs, or posts about brain retraining.
- Knowledge Gaps: Requests for clearer explanations of terms like “functional” and “psychosomatic,” and the sharing of new research and educational resources.
- Support: Messages of hope, solidarity, advocacy, and campaigns that mobilize patients and families toward better care and policy influence.
Discussion: Implications for Clinicians, Patients, and Platforms
The study indicates a tension between a biomedical, modern understanding of FND and a broader online audience that intersects with ME/CFS and long COVID communities. Negative content and skepticism about FND can spread quickly on X, potentially hindering acceptance of contemporary FND concepts. Conversely, the platform also hosts solidarity, knowledge exchange, and constructive dialogues—especially when influential users tag related illness communities and share evidence-based resources.
For clinicians and patient advocates, these findings underscore the importance of proactive, ongoing engagement on social media: providing clear explanations of FND mechanisms, correcting misinformation, and linking to credible sources. Moderation, fact-checking, and cross-community collaboration can help ensure that online discourse supports informed decision-making rather than amplifying stigma.
Limitations and Next Steps
The study relies on self-declared roles and a two-month window, which may not capture longer-term trends or offline experiences. Future work could extend the timeframe, include multilingual data, and compare platforms to understand how different social media ecosystems shape the FND narrative. Researchers also encourage platform designers to consider how algorithms influence the visibility of health information and the potential for misinformation to spread across illness communities.
Conclusion: Toward Evidence-Based, Inclusive Online Dialogue
Discussions of FND on X reveal a dynamic ecosystem where biomedical voices coexist with patient-led perspectives from related chronic illnesses. By mapping networks and themes, this study provides a roadmap for improving online health communication, supporting patients, and guiding professionals toward more impactful, accurate, and compassionate engagement on social media.
