Introduction: Framing FND in the Digital Age
Functional Neurological Disorder (FND) sits at the crossroads of neurology and psychiatry, with patient experiences often shaped by online narratives as much as clinical findings. This article summarizes a mixed methods study that investigates how FND is discussed on X (formerly Twitter), identifying influential voices, network structures, and the themes that recur in online conversations about FND alongside related conditions such as ME/CFS and long COVID. The aim is to understand how information spreads, how stigma and misunderstanding persist, and where credible knowledge can better reach communities in need.
Methods: A Multilayered Approach to Online Discourse
The study combined three components: a quantitative count of posts and users, social network analysis to map interactions, and qualitative content analysis to describe topics and narratives. Researchers collected English-language posts using terms like “functional neurological disorder,” “FND,” “#FND,” and “conversion disorder” over a two-month window in 2024. Posts with at least 200 views were included, and the dataset comprised 1104 posts from 426 users. Publicly available data were analyzed with strict anonymization and ethical safeguards.
Network Insights: Who Shapes the Conversation?
Network visualizations revealed two dominant communities: one anchored by individuals connected to ME/CFS and long COVID, often expressing skepticism toward FND, and a smaller, denser FND-centered cluster. Notably, influencers outside the FND camp—frequently patients with long COVID or ME/CFS—exerted outsized reach and could amplify anti-FND sentiment. The study used degree centrality and closeness centrality to identify top influencers, noting that central actors could propagate messages more efficiently across the network. A striking finding was that professionals identified with FND were less prominent among the most influential accounts than expected, underscoring a potential gap between expert voices and widespread online reach.
Content Themes: What People Talked About
Using reflexive thematic analysis, researchers identified six core themes and 20 subthemes from the 1104 original posts (replies and reposts were analyzed for network structure but not all were included in the thematic coding). The main themes were:
– Conflict: Debates over validity, diagnostic labels, and the relationship between FND, long COVID, and ME/CFS. Some users framed FND as a biological brain disorder, while others invoked mind–body dualism and questioned the biomedical emphasis.
– Deception: Narratives of pseudoscience, gaslighting, and concerns about credibility and fraud within the FND discourse.
– Mistreatment and Harm: Issues around misdiagnosis, gendered stigma, and online abuse experienced by patients and advocates.
– Symptom Experience: Personal accounts of symptoms and recovery journeys, including caregiver impacts and strategies for coping.
– Knowledge: Requests for accessible explanations of FND, long COVID, and related conditions, alongside sharing of webinars and research updates.
– Support: Messages of solidarity, advocacy, and mutual encouragement within patient networks.
Implications for Public Health Communication
The content analysis highlighted that the online space can propagate both helpful information and harmful misconceptions. Although some patients and professionals used X to share education and coping strategies, a substantial portion of highly viewed content carried skeptical or negative views about FND. This duality mirrors broader tensions in health misinformation research, where emotional resonance and identity alignment can trump nuanced scientific messaging.
Discussion: What This Means for FND Stakeholders
The study suggests that online influence in FND discourse is often wielded by individuals outside the professional FND community, including long COVID and ME/CFS advocates. This reality underscores a need for proactive engagement by credible FND organizations and clinicians on social platforms to disseminate evidence-based explanations and to counter misinformation. Moderation, patient education, and collaborative tagging of related illnesses during online events could help create a more integrated and accurate online narrative about FND.
Limitations and Future Directions
Limitations include reliance on self-declared roles and conditions, a two-month observation window, and language constraints. Future work could expand to multilingual analyses, compare multiple platforms, and assess how algorithmic factors shape exposure to FND content. The overarching goal remains to improve public understanding, reduce stigma, and support people affected by FND and related chronic conditions.
Conclusion: Toward Credible, Compassionate Online Discourse
The online discussion of FND on X reveals a complex ecosystem where knowledge, controversy, and lived experience intersect. By identifying key influencers, mapping network structure, and unpacking dominant narratives, researchers and practitioners can tailor outreach to improve accuracy, reduce stigma, and empower patients and families with trustworthy resources.
