Digital healthcare for the management of functional neurological disorders

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).

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 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.

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.

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 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

Glenn Nielsen is a Senior Lecturer in Neurological Physiotherapy at St George’s University of London and a clinical physiotherapist at St George’s NHS Trust. He completed his PhD in 2017, developing and assessing the efficacy of physiotherapy interventions for people with functional motor disorder. He was the chief investigator for the NIHR funded multicentre randomised controlled trial of specialist physiotherapy for functional motor disorder. He is currently leading a series of studies exploring functional somatosensory symptoms, which is funded by an HEE/NIHR Clinical Lectureship. He co-leads the UK AHP FND Network and is a founding member of the International Functional Neurological Disorder Society. 

Professor Alan Carson, University of Edinburgh

Suggestion in hypnosis refers to an intentional communication of beliefs or ideas, whether verbally or nonverbally, to produce subjectively convincing changes in experience and behaviour. Phenomenological similarities between the effects of suggestions in hypnosis and functional neurological symptoms, and potential overlapping mechanisms, have been recognised since the earliest descriptions of hypnosis in the 19th century. Suggestion in hypnosis has also been applied to the treatment of functional neurologic symptoms from this time onwards.  Therapeutic suggestion is typically applied within the context of other treatment approaches, such as cognitive-behavioural, rehabilitative, or psychodynamic therapy. Suggestions are generally symptom focused (designed to resolve a symptom) or exploratory (using methods such as revivification or age regression to explore experiences associated with symptom onset). Suggestions work by creating a reversible cognitive set in which the content of the suggestion acts as a temporary high level prior that enlists association cortices to generate a congruent change in experience or behaviour. Highly hypnotically responsive individuals have an ability to increase the ‘precision’ or ‘weight’ of priors, with marked changes effected in relevant neuropsychological domains through top down modulation compared to less hypnotisable individuals.   Virtual reality, by contrast, evokes compelling subjective experiences by bottom up  sensory inputs that simulate a particular type of experience. As such, a targeted combination of  suggestions and VR to address specific functional symptoms has the potential to bidirectionally modulate the cortical hierarchy,  with the potential to enhance the responsiveness to suggestion of less hypnotically responsive individuals for therapeutic purposes. This talk considers these possibilities in more detail.

Dr Quinton Deeley, King's College London, UK

Dr Quinton Deeley, King's College London, UK

Dr Deeley is a Senior Lecturer in Social Behaviour and Neurodevelopment at the Institute of Psychiatry, Psychology, and Neuroscience, King’s College London. He chairs the Maudsley Philosophy Group, and Social and Cultural Neuroscience Group at the IOPPN. He has researched the relations between culture, cognition, and brain function since studying Theology and Religious Studies at Cambridge University, medicine at Guys and St Thomas’, and psychiatry at the Maudsley Hospital. His work brings cognitive neuroscience research into dialogue with humanities to improve understanding of religious cognition, experience, and behaviour. Current research topics include using suggestions to alter self-experience, voice hearing in spiritualist mediums, and investigating how religious practices modulate cognition using a Virtual Reality reconstruction of an ancient Greek religious ritual.

The rapid digitisation of healthcare, propelled by advancements in Artificial Intelligence (AI) and Machine Learning (ML), has revolutionised the management and analysis of Electronic Health Records (EHRs). Among the diverse techniques emerging from this technological frontier, Natural Language Processing (NLP) stands out for its ability to unveil hidden patterns, insights, and the nuanced dynamics of medical professional-patient interactions. Specifically, topic modelling and sentiment analysis provide powerful tools for deciphering the latent themes and emotional undertones in clinical documentation, offering unprecedented opportunities to understand and improve patient care. This is even more important in FND care, as FND patients often feel unheard and stigmatised by clinical professionals. We conducted an NLP-based and sentiment analysis of written records from neurologists, psychologists and other medical professionals supporting FNF patients.  The results indicated remarkable differences in the type of vocabulary used and in the ‘emotional tones’ conveyed by different types of professionals when writing to and about their FND patients. Our findings have direct clinical implications and offer insights into how to develop better care pathways for people with FND and how to improve clinical training for professionals working with FND patients. 

Dr Daniela Di Basilio, Lancaster University, UK

Dr Daniela Di Basilio, Lancaster University, UK

Dr Daniela Di Basilio is a Lecturer in Clinical Psychology at Lancaster University and a Clinical Psychologist and CBT therapist working with people with moderate-to-severe mental health difficulties.

Her research interests focus primarily on the benefits of digital interventions in clinical and non-clinical populations. She is particularly interested in understanding the benefits of digital health tools (eg apps and neurofeedback) for people with functional disorders (eg psychogenic seizures). Her recent work also focused on the application of AI-driven language analysis to understand semantic and emotional connotations of conversations between healthcare professionals and people with functional neurological disorders. She is a key researcher of the Manchester Epilepsy Research Network, a research group bringing together academics and clinicians to improve care for people living with epilepsy and psychogenic seizures.

Daniela strives to bring together research and clinical practice to drive innovation in the field of functional disorders and severe mental illness.

The Rosa Burden Centre provides a 3 week multi-disciplinary programme for people with FND symptoms. Dr Mallam and her team have reviewed symptoms-based outcome measures on admission and discharge, together with 3 and 6 month follow up. She will also present information about our novel FND Liaison Practitioner role.

Dr Elizabeth Mallam, Southmead Hospital, UK

Dr Elizabeth Mallam, Southmead Hospital, UK

Dr Mallam trained in Edinburgh, London, and Bristol. She qualified as a Neurology Consultant in 2017 and has delivered 2 FND clinics a week since then. Dr Mallam is based at the Rosa Burden Centre at Southmead Hospital in Bristol. The Rosa Burden Centre has a long history of treating people with FND. Dr Mallam and the FND team were delighted to recently secure funding to expand the FND service at the Rosa Burden Centre to include a novel FND Liaison Practitioner role and expand their multi-disciplinary inpatient and outpatient programmes incorporating neurophysiotherapy, occupational therapy, and psychotherapy.

This talk will start by summarising recent advances in the understanding of the pathophysiology of functional neurological disorders with a focus on biomarkers. Mechanisms will be discussed in light of neuroimaging findings, summarising older finding and new advanced imaging methods including classifiers and real-time functional MRI. A link on imaging findings to clinical variables and biological markers will also be addressed.

Professor Selma Aybek, Fribourg University, Switzerland

Professor Selma Aybek, Fribourg University, Switzerland

Doctor Selma Aybek is Full Professor of Neurology at Fribourg University, Switzerland. After her clinical training she did a 3-year fellowship at the Institute of Psychiatry in London at King’s College University. Her main research and clinical interest focuses on Functional neurological Disorder She has been awarded several prices for her research in the field and is member of the Board of Directors of the Functional Neurological Disorder Society.

Functional Neurological Disorder (FND) is a common and disabling condition at the intersection of neurology and psychiatry. Until recently it has fallen into the gap between physical and mental health resulting in its being relatively neglected by research and as such its mechanisms are still poorly understood and there are limited diagnostic tools and effective treatments. Virtual reality (VR) has been increasingly applied to a broad range of conditions, including neuropsychiatric disorders, mostly as a treatment modality. FND has unique features, many of which suggest the particular relevance for, and potential efficacy of, VR in both better understanding and managing it. Dr Nicholson will outline how VR might aid the understanding of FND as well as its diagnosis and treatment. He will propose a research agenda for the use of VR in FND that might be applicable or adaptable to other related disorders.

Dr Tim Nicholson, IOPPN, King's College London, UK

Dr Tim Nicholson, IOPPN, King's College London, UK

Dr Tim Nicholson is a Reader in Neuropsychiatry at the Institute of Psychiatry Psychology & Neuroscience (IoPPN), King’s College London, and leads the Neuropsychiatry Research and Education Group (NREG). He is an Honorary Consultant Neuropsychiatrist at the South London and Maudsley NHS Foundation Trust. His clinical and research work focuses on Functional Neurological Disorder (FND), immunopsychiatry and broader neuropsychiatric disorders - including those resulting from COVID-19. He has over 20 years of experience working clinically with FND and it was the topic of his PhD and the majority of his subsequent research activity including leading on studies into mechanisms, outcome measures and novel treatments such as Transcranial Magnetic Stimulation (TMS) and more recently psychedelics and Virtual Reality. He has published over 150 peer reviewed papers, over half of which are on FND, edited a textbook on FND, written seven book chapters on FND and multiple books on general pharmacology and specialist psychopharmacology.

In an era where individuals, including those with functional neurological disorders (FND), experience near-constant exposure to digital signals, a minimalist approach through floatation-REST (Reduced Environmental Stimulation Therapy) offers a contrasting and potentially transformative avenue for FND treatment. Floatation-REST involves immersing individuals in a sensory-reduced environment, typically a specialised pool filled with a saturated Epsom salt solution, allowing them to float effortlessly. This non-pharmacologic approach effectively removes technological and external environmental inputs to the nervous system. Initial research from randomised controlled trials in psychiatric populations indicates that floatation-REST is safe and feasible for clinical integration. It significantly reduces anxiety levels, acutely enhances relaxation, serenity, and interoceptive awareness, attenuates autonomic arousal and pain, and improves mental clarity and well-being. Additionally, this intervention has been shown to reduce functional connectivity between default mode and somatomotor network hubs in healthy individuals and exert sustained improvements in visual body image in those with eating disorders, suggesting that changes in bodily consciousness play an important role in the induced effects. Given the substantial comorbidity of stress, anxiety, and depression with FND and emerging evidence of aberrant interoception in the disorder, floatation-REST would appear to hold promise for clinical benefit in FND. This talk will examine the potential therapeutic benefits of floatation-REST, emphasising its efficacy in reducing anxiety, enhancing relaxation and serenity, alleviating pain, and modulating aversive body representations in individuals with FND. The overall aim is to stimulate discussion on how this non-digital intervention can complement existing and emerging digital tools to achieve symptomatic improvement in individuals with FND.

Dr Sahib Khalsa, UCLA Geffen School of Medicine, USA

Dr Sahib Khalsa, UCLA Geffen School of Medicine, USA

Dr Khalsa is a psychiatrist and neuroscientist whose research investigates the role of interoception and digital psychiatry in mental and physical health. His studies utilise a variety of approaches including pharmacological and non-pharmacological techniques, functional magnetic resonance imaging (fMRI), electroencephalography (EEG), computational modelling, and digital applications for graphically mapping body perception and psychosocial history. Central aims of this work are to discover modifiable neuroscience-based treatment targets for psychiatric disorders, to develop tests to identify these targets in individual patients, and to design digital and neuroscience-based therapies capable of ameliorating the symptoms and signs of mental illness.