Alan Carson

It is well recognized that many pandemic viruses are associated with neurologic complications, most recently with COVID-19. After the outbreak of the COVID-19 pandemic, neurologic surveillance platforms were implemented to characterize the complications of COVID-19. Surveillance platforms are invaluable in providing timely data, informing clinical practice, and directing future research. Lessons learned from recent neurologic surveillance networks include the importance of global and cross-specialty collaboration. It is critical for future surveillance systems to consider these aspects, as it will also serve to improve representation of low and middle-income countries (LMICs) and communities. Trainees played a critical role in the success of neurologic surveillance networks; as frontline health care workers, they were able to provide timely data collection, and their fresh insights are important for future pandemic surveillance system development. In this article, we review the methods of recent neurologic surveillance networks and discuss their strengths and limitations. We explore the outlook for pandemic surveillance platforms and the crucial role global collaboration plays in ensuring that LMICs are represented. We review the role of trainees in pandemic surveillance networks and discuss how it is vital to encourage their continued involvement to ensure that, as future health care leaders, they are prepared to manage future pandemics effectively.

Background: 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. Objective: 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. Methods: 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. Results: 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. Conclusions: 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.

Background: Functional motor disorder often causes persistent disabling symptoms that are associated with high healthcare costs. In recent years, specialist physiotherapy, informed by an understanding of functional motor disorder, has emerged as a promising treatment, but there is an absence of evidence of its effectiveness from large randomised controlled trials. Methods: We conducted a pragmatic, multicentre, randomised controlled trial, comparing specialist physiotherapy for functional motor disorder to treatment as usual, which was defined as community neurological physiotherapy. The primary outcome was the Short Form questionnaire-36 items Physical Functioning domain at 12 months (scale range 0–100, with 100 indicating optimum health). The trial was powered to detect a 9-point difference in the primary outcome with 90% power at the 5% level of significance. Secondary domains of measurement included a patient perception of improvement, health-related quality of life, mobility, anxiety, depression and illness perception. We also completed a health economic analysis with the primary aim of calculating the mean incremental cost per quality-adjusted life-year over 12 months. In prespecified analysis plans, we excluded participants from the primary analysis if they were unable to receive their trial-allocated treatment due to COVID-19 lockdown restrictions. Sensitivity analysis explored the impact of this decision. Results: Between 19 October 2018 and 31 January 2022, 355 adults with functional motor disorder were randomised (1 : 1) to specialist physiotherapy (n = 179) and treatment as usual (n = 176). Eighty-nine participants were excluded due to COVID-19 disruptions. Retention for the primary analysis was 90% for both groups, leaving 241 participants in the primary analysis. At 12 months, there was no between-group difference in the primary outcome (adjusted mean difference 3.5, 95% confidence interval −2.3 to 9.3). However, several secondary outcomes favoured specialist physiotherapy, including the participant perception of improvement, Short Form questionnaire-36 items Mental Health domain, confidence in the diagnosis and two subscales (Personal Control and Illness Coherence) of the Revised Illness Perception Questionnaire. There were no differences in the remaining outcomes. At 6 months, the following outcome measures were significantly different, in favour of specialist physiotherapy: participant perception of improvement, the Short Form questionnaire-36 items Physical Role Limitations, Short Form questionnaire-36 items Social Functioning, Short Form questionnaire-36 items Mental Health, EuroQol-5 Dimensions five-level version utility score, confidence in the diagnosis and three subscales (Timeline Cyclical, Personal Control and Treatment Control) of the Revised Illness Perception Questionnaire. No outcomes significantly favoured treatment as usual. In the health economic analysis, the incremental cost per quality-adjusted life-year gained from a health and social care cost perspective was £4133 with an 86% probability that specialist physiotherapy is cost-effective compared to treatment as usual at a cost-effectiveness threshold of £20,000 per quality-adjusted life-year gained. There were no adverse events related to physiotherapy. Conclusion: Specialist physiotherapy was not superior to treatment as usual for the primary outcome, the Short Form questionnaire-36 items Physical Functioning domain at 12 months. However, a number of secondary outcome measures favoured specialist physiotherapy at 6 and 12 months. There is a high probability that specialist physiotherapy is cost-effective. Limitations: Participants in treatment as usual waited longer to start physiotherapy, which resulted in a shorter time between concluding treatment and completing the primary outcome. Most outcome measures, including the primary outcome, were participant reported, which may have been biased by perceptions of the randomised treatment allocation. Future work: Future work should identify or develop more suitable outcome measures for functional motor disorder research, explore who is most likely to benefit from specialist physiotherapy and identify alternative interventions for those unlikely to benefit from this treatment. Additional work is needed to adapt treatment to meet the needs of minority groups and young people. Funding: This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme as award number 16/31/63.

Functional cognitive disorder is the cognitive subtype of functional neurological disorders. Symptoms are associated with a high level of distress and typically arise due to various risk factors including abnormal focused attention, high memory expectations and poor metacognition. Easily accessible specialized treatments for functional cognitive disorder are needed. Digital interventions are less costly and scalable and allow individuals to engage in self-care in a flexible manner. In this study, we aimed to (i) evaluate the feasibility and safety of a novel self-help digital intervention based on principles of cognitive behavioural therapy and related approaches, (ii) explore preliminary effects of this intervention and (iii) learn about participants’ experience with the intervention. Patients were recruited via a neuropsychiatry clinic. They autonomously completed a 6-week intervention, with phone and email technical support, and were assessed at baseline and at the end of the intervention, using self-reported questionnaires. Besides feasibility outcomes, main measures were the metamemory in adulthood questionnaire, subjective memory complaints, clinical global impression of change, Brief Illness Perception Questionnaire, Behavioural Responses to Illness Questionnaire, Compensatory Cognitive Strategies Questionnaire, depressive and anxiety symptoms, work and social functioning and quality of life. A within-group design was employed. Means, standard deviations and effect sizes were estimated. Post-treatment semi-structured interviews were conducted to further explore the acceptability and usability of the programme. Of the 38 patients eligible, 37 completed the baseline questionnaires (97% recruitment rate). Thirty started the intervention (54% female, mean age 50.4). Four dropped out (4/30, 13%), with 23/30 (77%) completing three or more modules, and the attrition rate was 37%. Twenty-seven treatment-related negative effects were reported (5% of total). Overall satisfaction with the programme was high with 62% (16/26) reporting feeling ‘satisfied’ or ‘very satisfied’. Sixteen (62%) reported improvement in their cognitive symptoms (‘minimally improved’, ‘much improved’ and ‘very much improved’). Paired t-tests showed significant improvements on illness perceptions (mean change −6.65, P = 0.001), depressive symptoms (mean change −2.96, P = 0.008) and quality of life (mean change 10.06, P = 0.03) at post-treatment. Five patients were dissatisfied with the lack of personalization and found the content unhelpful, with some experiencing increased anxiety. While the intervention met most of its feasibility benchmarks, efficacy needs to be explored in a future randomized controlled trial. Self-help digital therapy may be a flexible and cost-effective option to increase availability and accessibility of specialized treatment for functional cognitive disorder, within a stepped care model, as a complement to other multidisciplinary face-to-face interventions.

BACKGROUND Functional cognitive disorder (FCD) is a common and disabling condition for which accessible and evidence-based treatments are urgently needed. OBJECTIVE We describe the planning and development stages of a new self-help mobile app intervention for FCD. METHODS The UK Medical Research Council's Complex Interventions framework was followed. Theory- and user-centered approaches were adopted to develop Mementum – a 6-week programme rooted on cognitive behavioural techniques and complementary principles (mindfulness, education, cognitive rehabilitation). RESULTS A scoping review is presented. Thematic analysis of patient interviews identified 6 themes and 13 subthemes, including user needs, management strategies, opportunity and motivation. The treatment model places attentional dysregulation as the core symptom generator, around which treatment content was developed. Provisional insights from a focus group suggested the intervention is acceptable and credible. Facilitators and barriers were uncovered and addressed. The programme includes 7 modules, videos, patient stories, FAQs, and signposting to existing resources. Interactive features include a weekly memory diary and symptom checklist, tailoring of contents to symptoms, and homework tasks. CONCLUSIONS We used a systematic approach to develop a novel digital health intervention for FCD. Collaborations with key stakeholders enabled intervention development and optimisation. Feasibility, acceptability, and efficacy testing of this intervention are underway. CLINICALTRIAL N/A

BACKGROUND 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. OBJECTIVE 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. METHODS 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. RESULTS 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. CONCLUSIONS 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. CLINICALTRIAL

It is established that patients hospitalised with COVID-19 often have ongoing morbidity affecting activity of daily living (ADL), employment, and mental health. However, little is known about the relative outcomes in patients with COVID-19 neurological or psychiatric complications. We conducted a UK multicentre case–control study of patients hospitalised with COVID-19 (controls) and those who developed COVID-19 associated acute neurological or psychiatric complications (cases). Among the 651 patients, [362 (55%) cases and 289 (45%) controls], a higher proportion of cases had impairment in ADLs (199 [68.9%] vs 101 [51.8%], OR 2.06, p < 0.0002) and reported symptoms impacting employment (159 [58.2%] vs 69 [35.6%] OR 2.53, p < 0.0001). There was no significant difference in the proportion with depression or anxiety between case and control groups overall. For cases, impairment of ADLs was associated with increased risk in female sex, age > 50 years and hypertension (OR 5.43, p < 0.003, 3.11, p = 0.02, 3.66, p = 0.04). Those receiving either statins or angiotensin converting enzyme (ACE) inhibitors had a lower risk of impairment in ADLs (OR 0.09, p = 0.0006, 0.17, p = 0.03). Patients with neurological or psychiatric complications of COVID-19 had worse functional outcomes than those with respiratory COVID-19 alone in terms of ADLs and employment. Female sex, age > 50 years, and hypertension were associated with worse outcomes, and statins or ACE inhibitors with better outcomes.

Functional neurological disorder (FND) is continuing to gain increasing recognition globally as a valid and potentially treatable disorder. Iatrogenic harm towards patients with FND is significant, however, and has been around for centuries. Despite advances in our understanding around the aetiology, pathophysiology and treatment of FND, many aspects of such harm continue to persist. Avoidance of iatrogenic harm has been highlighted by clinicians as one of the most important therapeutic considerations in FND; however, the sources and range of potential harms, or indeed ways to mitigate them, have not previously been summarized. Using a combination of clinical and research experience and scoping review methodology, this review aims to describe the main sources of iatrogenic harm towards patients with FND, including harm from misdiagnosis, delayed diagnosis and treatment, direct harm from professional interactions, other stigma-related harms, harm related to diagnostic overshadowing and over-diagnosis of FND. We also describe some potential ways to address and prevent such harms, such as ways to reduce misdiagnosis with a focus on rule in signs, optimizing teaching and communication, ensuring parity of FND with other medical conditions and continued integration of patient and professional organizations.