Welcome by the Royal Society and lead organisers
Keynote: FND: unmet needs in digital health
Jon will review the past present and future of FND as it relates to unmet needs and how digital forms of health might improve them. He will especially comment on diagnostic precision, assessment of comorbidity, outcome measurement, access to treatment, rehabilitation and novel treatment.
Professor John Stone, University of Edinburgh, UK
Professor John Stone, University of Edinburgh, UK
Professor Jon Stone is Professor of Neurology at the University of Edinburgh and Consultant Neurologist with NHS Lothian. Since 1999 Jon has promoted a new transparent, pragmatic and multidisciplinary approach to FND which had been a neglected and stigmatised problem
In 2009 he made the first website (and now app), the Neurosymptoms FND guide, for patients with FND which is now widely used across the world. He has published over 350 articles in the area including large cohort, mechanism and treatment studies. and led on new international diagnostic criteria for FND. He is currently President Elect and was co-founder, with Mark Hallett and Alan Carson of the new international FND society which now has 1500 members.
His awards include the Jean Hunter prize from the Royal College of Physicians (2014), the Royal College of Psychiatry President’s Medal (2017), the Ted Burns Humanism in Neurology Award from the American Brain Foundation (2020) and the John Walton Lecture Award from the Association of British Neurologists (2022).
Digital Media and FND: The patient perspective
As a charity, FND Action recognise the vital role media plays in communication, education, and support. For those diagnosed with FND, digital platforms offer unique opportunities to connect with others and access valuable resources. Online communities allow individuals to share experiences and coping strategies, helping to combat feelings of isolation. Educational resources can enhance understanding of FND, empowering individuals in their management and recovery. Whilst there are benefits, there are also drawbacks that negatively impact on this community, some of which are progressively getting worse and of great concern. This presentation explores how digital media is utilised and its outcomes, through the eyes of the patient.
Ms Kim Hearne, FND Action, UK
Ms Kim Hearne, FND Action, UK
Kim Hearne is the CEO and founder of FND Action, a leading charity focused on supporting individuals with FND in the UK. With a strong commitment to advocacy and community engagement, Kim has dedicated her life to improving awareness, understanding, and treatment of FND.
With attaining an in-depth knowledge of FND over the last decade, and a passion for patient advocacy, Kim has successfully led initiatives that provide education, resources, and support for individuals and families impacted by FND. Her leadership has been pivotal in fostering collaborations among medical professionals, researchers, and the FND community to enhance research and treatment options.
Driven by her own lived experience, Kim is deeply committed to supporting and empowering those affected by FND. Through her work at FND Action, she aims to create a compassionate environment where individuals feel supported and understood, while also striving to reduce stigma and improve access to care.
Fatigue in health and disease
Fatigue is a common experience, yet for many clinical populations fatigue is so prevalent and persistent that patients rate it as their worst or most debilitating symptom. This is true for individuals with neurological injury or disease, and it is also true for individuals whose illness has not yet been fully explained by medical research such as individuals with Functional Neurological Disorders (FND). However, despite its prevalence, fatigue remains poorly understood both because of imprecise definitions of fatigue and because of poor instruments to assess it. In this talk, Dr Wylie will discuss the work he has done to better understand cognitive fatigue in healthy individuals as well as in US Veterans with Gulf War Illness (which has many similarities to Chronic Fatigue Syndrome) and in individuals who have Post-Acute Sequelae of SARS CoV-2 infection (PASC, or ‘long COVID’). This work has shown fatigue-related activation in a specific set of brain regions including the caudate nucleus of the basal ganglia, the thalamus, the ventro-medial prefrontal cortex, the insula and the dorso-lateral prefrontal cortex. Furthermore, his work suggests that fatigue may be a signal the brain generates when the balance between effort and reward shifts such that the reward received for performing a given task no longer merits the effort required.
Glenn R Wylie, Rocco Ortensio Neuroimaging Center at Kessler Foundation, USA
Glenn R Wylie, Rocco Ortensio Neuroimaging Center at Kessler Foundation, USA
Dr Wylie’s research interests fall into three broad categories: cognitive fatigue, cognitive control, and the neurophysiological effects of cognitive interventions. In his work investigating cognitive fatigue, he has investigated the neural correlates of fatigue in healthy samples (both the young and the aged) as well as clinical samples such as individuals with multiple sclerosis (MS), traumatic brain injury (TBI) Stroke and COVID-19, as well as in medically unexplained illnesses such as Veterans with Gulf War Illness (GWI). In his work investigating cognitive control, he has investigated control processes in healthy samples (both the young and the aged) and clinical samples (MS, TBI, schizophrenia). In his work investigating the neurophysiological effects of cognitive interventions, he has investigated the functional changes in the brain associated with interventions such as exercise and cognitive interventions designed to improve memory. In this work, he has employed several of the tools of cognitive neuroscience including functional magnetic resonance imaging (fMRI), electroencephalography (EEG), functional Near Infrared Spectroscopy (fNIRS), positron emission tomography (PET), and behavioural measures.
Unmet needs of patients with functional / dissociative seizures
As a group, patients with functional / dissociative seizures (FDS) are characterised by high levels of medical and psychiatric pathology often associated with disability and distress and markedly increased rates of premature death. This talk will explore the increasing gap between recognised needs and evidence-based interventions on the one hand and available diagnostic and treatment services on the other. It will highlight the urgent need for improvements and innovative solutions at a time (including a greater and more efficient use of technology) when resources for new service developments are limited.
Professor Markus Reuber, University of Sheffield, UK
Professor Markus Reuber, University of Sheffield, UK
Markus Reuber splits his time between clinical research and practice. Most of his clinical work is dedicated to the treatment of patients with complex seizure disorders. His research portfolio is broad but has focussed particularly on the phenomenology and treatment of epileptic and non-epileptic seizure disorders and communication between doctors and patients. His studies have explored the use of automatic analysis of patients’ speech for diagnostic purposes and the improvement of psychotherapeutic interventions for patients with functional neurological disorder.
Markus Reuber grew up in Germany. He completed his undergraduate medical studies in in Germany and the UK and his postgraduate training in neurology in Leeds and Bonn, Germany, where he completed his PhD in the largest epilepsy surgery unit in Europe. He has worked as a Consultant or Honorary Consultant Neurologist in Sheffield for over 20 years and has helped to build up the epilepsy surgery and neuropsychotherapy services there.
Break
Remote monitoring of functional neurological symptoms in everyday life: identifying antecedents and correlates
Remote monitoring technologies (RMT) might be optimal tools for tracking variations in, and identifying mechanisms underlying, functional neurological symptoms (FNS). Ecological momentary assessment (EMA), for example, can illuminate moment-to-moment changes in symptoms and related states, with high temporal resolution and ecological validity. Wearable devices can objectively capture physiological signals that might predict or correlate with alterations in FNS, with minimal patient burden. However, few studies have harnessed the potential of RMT in FND to date.
I present data from a pilot study examining the feasibility and acceptability of a novel RMT protocol, which aimed to identify antecedents and correlates of FNS in real-world settings. The study combined EMA with Fitbit Charge 5 wearables to monitor subjective FNS and other physical and mental states, as well as objective physiological variables of potential relevance (heartrate, electrodermal activity, sleep, physical activity). Multilevel models were generated to examine variables correlated with FNS severity in concurrent and time-lagged analyses.
EMA completion rates were high (≥80%). Across the week, FNS participants reported significantly elevated pain, arousal, fatigue, negative affect, dissociation, salient events, and sleep duration, relative to HC. The FNS sample also exhibited elevated objective sleep duration, sleep disturbance, and resting heartrate. FNS severity correlated significantly with affect, salient events, subjective arousal, pain, fatigue, and sleep disturbance, at the daily and/ or momentary level. Salient events and negative affect predicted momentary FNS severity in time-lagged analyses.
RMT are feasible and acceptable tools for investigating FNS in naturalistic settings. Larger-scale, longer-term RMT studies are needed in FND.
Dr Susannah Pick, King’s College London, UK
Dr Susannah Pick, King’s College London, UK
Susannah is an MRC Senior Research Fellow and Honorary Senior Lecturer at the Institute of Psychiatry, Psychology, and Neuroscience, King’s College London. She trained in experimental psychology and neuroscience at Cardiff and Liverpool and completed her PhD on emotional processing and psychosocial factors in functional/ dissociative seizures at King’s College London.
Susannah has been conducting research in neuropsychology and neuropsychiatry for over 20 years. Since 2008, her work has focused primarily on aetiology, mechanisms, outcomes, and treatments in FND and other closely related disorders.
In her current fellowship, Susannah is leading a research programme investigating aetiological factors and psychobiological mechanisms in functional motor symptoms and functional seizures. Her work uses varied methodologies, including experimental cognitive and behavioural tasks, psychophysiology, neuroimaging, and remote measurement technologies.
Digital healthcare for the management of FND: unmet needs in physiotherapy
Digital healthcare and technology have the potential to enhance physiotherapy practice, improve the patient experience and outcomes from treatment. Digital healthcare may provide effective solutions to current challenges including developing and validating assessment tools and outcome measurement, enhancing interventions with technology such as virtual reality and biofeedback, and monitoring function to guide progression and predict setbacks. Digital healthcare may also prove to be useful where we lack effective treatments, for example treatment of functional sensory loss. One of the greatest challenges facing people with FND is an inability to access treatment and long waiting times for specialist services. Digital technology may provide solutions to improve the efficiency of treatment resources. However, we should embrace technology with caution. Digital healthcare may not suit all people and we risk excluding some vulnerable groups. There are risks associated with replacing tried and tested treatment will less effective novel approaches, especially if market pressures drive changes. To ensure continued progression of physiotherapy and rehabilitation, we must take an open minded yet considered approach to digital healthcare. Patients and service users should be involved in all stages of development, testing and implementation.
Dr Glenn Nielsen, St George’s University of London, UK
Dr Glenn Nielsen, St George’s University of London, UK
Discussion: Identify unmet needs in digital healthcare for individuals with functional neurological disorder
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