An Exploration of How Functional Neurological Disorder Is Discussed on X (Twitter): Mixed Methods Study Using Social Network and Content Analysis. — CFSMEATLAS
An Exploration of How Functional Neurological Disorder Is Discussed on X (Twitter): Mixed Methods Study Using Social Network and Content Analysis.
McLoughlin, Caoimhe, Wang, Jing-Yi, Do, Florence et al. · Journal of medical Internet research · 2025 · DOI
Quick Summary
Researchers studied how people talk about Functional Neurological Disorder (FND) on social media platform X (Twitter). They found that most influential voices discussing FND actually dismiss or disagree with the condition, while people with ME/CFS and long COVID have more visibility in these conversations. This matters because online information shapes what patients and the public believe about these conditions.
Why It Matters
This study reveals how online narratives about neurological conditions are shaped by non-professional voices and potentially misinformation, which directly impacts ME/CFS patients who experience similar diagnostic and acceptance challenges. Understanding these dynamics helps explain why patients struggle with recognition and support. The findings suggest that stigmatized conditions need strategic engagement with online communities to counter misconceptions.
Observed Findings
42.3% of users were primarily associated with conditions other than FND, predominantly ME/CFS and long COVID
40.8% of posts were authored by self-declared patients
Social network analysis revealed two separate communities with minimal interaction between FND and ME/CFS/long COVID clusters
7 of the 10 most influential users frequently expressed anti-FND views
65.5% of the 58 most-viewed posts (≥5,000 views) were negatively predisposed toward FND
Inferred Conclusions
Online discourse about FND is disproportionately shaped by users dismissive of the diagnosis rather than FND patients and professionals
ME/CFS and long COVID communities have stronger outward influence on public narratives about FND than FND-specific communities
FND organizations and medical professionals have minimal influence relative to anti-FND voices on social media
The combination of conflation between conditions and negative framing may contribute to further stigma and misunderstanding of FND among patients seeking online information
Remaining Questions
How do these online narratives translate into real-world impacts on FND patients' access to diagnosis and treatment?
What This Study Does Not Prove
This study does not prove that social media discourse directly causes patient harm or delays diagnosis, only that negative narratives predominate online. It cannot establish causation between influential users' views and public understanding of FND. The findings are specific to X/Twitter and may not reflect attitudes on other platforms or in offline contexts.