Functional neurological disorder (FND) is one of the commonest conditions in neurological practice, describing symptoms like paralysis and seizures that can be severe and disabling. It is a diagnosis that is confirmed clinically rather than by scans or laboratory results. It is a stigmatized and widely misperceived condition, and since the emergence of long COVID, there has been some conflation of FND with other conditions, which has caused further misunderstanding. Social media has become increasingly popular for patients to learn and interact about their conditions, and the information that they seek and receive may be shaped by many factors. Prior to this study, the online discourse about FND had not been described in the literature. We aimed to analyze and describe how FND is discussed on the social media platform X (formerly known as Twitter) using a mixed methods approach. Using search terms related to FND, the authors collected data from 426 users and 1104 posts, generating a total of 7640 replies and reposts over a 2-month time frame in 2024. Quantitative descriptive and social network analyses were carried out to map key influential users and communities, in addition to measuring the influence of users. Content analysis was undertaken to describe the prevalent topics being discussed. More users overall associated with conditions outside FND (n=180, 42.3%), mostly long COVID and myalgic encephalomyelitis/chronic fatigue syndrome, compared with FND (n=148, 34.7%). Self-declared patients made up 40.8% (450/1104) of posts and 36.4% (n=155) of users. Social network analysis revealed 2 separate communities with little interaction. There was a prominence of myalgic encephalomyelitis/chronic fatigue syndrome and long COVID–associated users (nodes) over FND users (nodes). The former cluster showed stronger connections outwardly or peripherally than the FND cluster, suggesting that they may have a stronger impact on shaping the public narrative around FND than FND nodes. In total, 7 of the top 10 most influential users often displayed anti-FND views, while FND organizations and professionals had much less influence. There were 58 posts with at least 5000 views. Of these 58, 10 were from self-declared FND professionals, while 19 were from self-declared professionals associated with other conditions. Of these highly viewed posts, 38 of 58 were negatively predisposed toward FND. Content analysis showed themes of (1) conflict, (2) deception, (3) mistreatment and harm, (4) symptom experience, (5) knowledge, and (6) support. A large proportion of the discourse around FND on X is shaped by users who are dismissive of the concept of FND and those associated with it. These findings have implications for individuals getting support for a condition that is already widely misunderstood. This study could provide a template for assessing how other stigmatized conditions are perceived on the web.

Patients and their families routinely use the Internet to learn about stem cell research. What they find, is increasingly influenced by ongoing changes in how information is filtered and presented online. This article reflects on recent developments in generative artificial intelligence and how the stem cell community should respond.

The rapidly evolving stem cell field puts much stress on developing educational resources. The ISSCR Education Committee has created a flexible stem cell syllabus rooted in core concepts to facilitate stem cell literacy. The free syllabus will be updated regularly to maintain accuracy and relevance.

Background The term ‘brain fog’ is increasingly used colloquially to describe difficulties in the cognitive realm. But what is brain fog? What sort of experiences do people talk about when they talk about brain fog? And, in turn, what might this tell us about potential underlying pathophysiological mechanisms? This study examined first-person descriptions in order to better understand the phenomenology of brain fog. Methods Posts containing ‘brain fog’ were scraped from the social media platform Reddit, using python, over a week in October 2021. We examined descriptions of brain fog, themes of containing subreddits (topic-specific discussion forums), and causal attributions. Results 1663 posts containing ‘brain fog’ were identified, 717 meeting inclusion criteria. 141 first person phenomenological descriptions depicted forgetfulness (51), difficulty concentrating (43), dissociative phenomena (34), cognitive ‘slowness’ and excessive effort (26), communication difficulties (22), ‘fuzziness’ or pressure (10) and fatigue (9). 50% (363/717) posts were in subreddits concerned with illness and disease: including COVID-19 (87), psychiatric, neurodevelopmental, autoimmune and functional disorders. 134 posts were in subreddits about drug use or discontinuation, and 44 in subreddits about abstention from masturbation. 570 posts included the poster’s causal attribution, the most frequent attribution being long COVID in 60/570 (10%). Conclusions ‘Brain fog’ is used on Reddit to describe heterogeneous experiences, including of dissociation, fatigue, forgetfulness and excessive cognitive effort, and in association with a range of illnesses, drugs and behaviours. Encouraging detailed description of these experiences will help us better understand pathophysiological mechanisms underlying cognitive symptoms in health and disease.

ObjectivesThe term ‘brain fog’ is increasingly used in social and other media. But what is brain fog? What sort of experiences do people talk about when they talk about brain fog? And, in turn, what might this tell us about potential underlying pathophysiological mechanisms? In this study we examined first-person descriptions of brain fog in order to better understand a) the phenomenology of brain fog, and b) the causal attributions of those describing brain fog. We use this information to consider implications for clinical research.MethodsData were scraped from the social media platform Reddit using Python. Posts containing ‘brain fog’ were identified between 27thOctober 2021 and 3rd November 2021. Those not describing or discussing brain fog as a symptom or experience were excluded. Potentially identifying information was removed prior to analysis. We undertook thematic analysis of containing subreddits (topic-specific discussion forums), causal attributions, and discrete brain fog experiences.Results1663 posts including the term ‘brain fog’ were identified, of which 717 met inclusion criteria.44% (315/717) posts originated from subreddits concerned with illness and disease: including COVID-19 (87 posts), autoimmune, functional, neurodevelopmental, major psychiatric, and endocrine disorders. Brain fog was also discussed in subreddits about prescribed and non-prescribed drug use, and subreddits concerned with intentional restriction of masturbation (‘nofap’).141 first person descriptions of brain fog described overlapping concepts including: forgetfulness (51), difficulty concentrating (43), dissociative phenomena (34), perceived cognitive ‘slowness’ and excessive effort (26), communication difficulties (22), a feeling of ‘fuzziness’ or pressure in the head (10), and fatigue (9).570 posts described a perceived cause of brain fog, of which half attributed brain fog to illness or disease (282/570) (the most common single attribution being ‘long COVID’ in 59/570 (10%)), followed by psychiatric conditions in 38/570 (7%). The second most common single attribution of brain fog, in 24/570 (24%), was restriction or excessive masturbation.ConclusionsBrain fog is discussed on the Reddit social media platform in association with a wide range of illnesses, diseases, drugs, and activities. The term is used to describe heterogeneous experiences, which do not map in a straightforward way to the domains enquired about during a ‘cognitive’ clinical examination, but include experiences of dissociation, fatigue, and excessive cognitive effort. Encouraging detailed description of subjective experiences – moving away from a psychometric testing approach and towards a phenomenological approach – might open new routes into understanding cognitive difficulties in health and disease.

To hold software service and platform providers accountable, it is necessary to create trustworthy, quantified evidence of problematic algorithmic decisions, e.g., by large-scale black box analyses. In this article, we summarize typical and general challenges that arise when such studies are conducted. Those challenges were encountered in multiple black box analyses we conducted, among others in a recent study to quantify, whether Google searches result in search results and ads for unproven stem cell therapies when patients research their disease and possible therapies online. We characterize the challenges by the approach to the black box analysis, and summarize some of the lessons we learned and solutions, that will generalize well to all kinds of large-scale black box analyses. While the studies we base this article on where one-time studies with an explorative character, we conclude the article with some challenges and open questions that need to be solved to hold software service and platform providers accountable with the help of permanent, large-scale black box analyses.

Stem cell research has attracted much public and biomedical anticipation centred on the possibility of using stem cells to treat various diseases and conditions, but the number of evidence-based therapies is currently limited. Numerous commercial direct-to-consumer (DTC) businesses are nonetheless marketing experimental stem cell therapies online for myriad medical conditions and aesthetic ailments, which has attracted critique due to safety and efficacy concerns. Existing research has largely focused on the problem of unproven therapies and regulatory pathways for addressing it. The proliferation of these experimental products must also be examined, however, in the broader socio-technological context of consumer culture and changing practices of knowledge-making in the digital era. DTC stem cell therapies have emerged as a new biomedical 'lifestyle' product that blurs the boundaries between 'science,' 'medicine,' and 'consumer culture.' In using, conceptualising and marketing stem cells, commercial businesses build on and commercially co-opt alternative epistemic and ontological frames that challenge scientific medicine. They advance promissory narratives about their potential that tap on cultural aspirations around the future of medicine and health. This is key, not only for understanding how and why these therapies have proliferated but also in conceptualising what the 'problem' around them actually is.

On October 1st, 2019 in response to critique from patient advocates and the medical community, Google explicitly prohibited promotion of unproven stem cell and gene therapy treatments on their platform in order to protect users from rising direct-to-consumer marketing of unproven medical interventions. This project aims to record the efficacy of that prohibition as it was enforced and track the impact of Google's AI-based advertising modalities on end-user results. In particular, this study gives special consideration to the risk potential for vulnerable patient communities navigating health information through Google search. Utilising a crowd-sourced `Black Box' audit with a browser plugin, we captured the continued presence of prohibited and problematic advertisements returned by stem cell-related queries in the months following Google's ban. In the domain of Search Engine Marketing (SEM), emerging stem cell treatments are situated in a critical juncture between advertisers and potentially vulnerable users with Google Search as an unobserved mediator. Addressing the issues raised by this data collection is of utmost importance in the protection of patient populations online. This project aims to draw attention to the need for transparency and accountability of advertising intermediaries engaged in the targeted promotion of potentially problematic treatments to vulnerable audiences.

Aim: This study examines online enquiries received by two prominent stem cell science initiatives operating in different geographical jurisdictions. Materials & methods: Combined quantitative and qualitative analysis undertaken of internet-based queries (n = 1047) received by Stem Cells Australia and EuroStemCell from members of the public over a two-year period (May 2014–2016). Results: Findings reveal striking similarities between the two datasets and highlight the range of uncertainties, priorities and needs of those seeking information about stem cells online. Conclusion: Sustained and in-depth tailored guidance is needed to effectively meet the diverse stem cell-related information-based needs of communities internationally. Such efforts should be prioritized by regenerative medicine research initiatives and organizations, given the trust and hope diverse publics appear to place in these groups.