Views on Using Psychoactive Substances to Self-Manage Functional Neurological Disorder: Online Patient Survey Results
This survey study (n=980) assessed the perspectives of patients with functional neurological disorders (FND) (e.g. multiple sclerosis, stroke) on novel treatments like psychedelic therapoy. 15% of respondents reported using illicit substances to manage their symptoms, with the majority expereincing no or minimal physical and psychological sequale. 46% of respondents reported that they would be willing to try medically supervised psychedelic therapy.
Authors
- James Rucker
- Mathieu Seynaeve
Published
Abstract
Objective
Functional neurological disorder (FND) causes a high burden of disability and distress. Although it is a common disorder, there is a pressing need for improved access to evidence-based treatments. With difficulties in finding effective treatment, some people with FND may seek alternative means of symptom relief, such as legal and illicit psychoactive substances, although the prevalence and nature of such self-management strategies are currently unclear. Additionally, psychoactive substances may represent novel treatment research opportunities, particularly for those with suboptimal improvement. The investigators examined the use of self-management techniques, as well as perspectives on novel therapies, in this patient population.
Methods
An online survey was created to assess self-management strategies and views on novel treatments for FND, including psychedelic therapy. The survey was accessible for 1 month, and respondents were recruited internationally through social media and patient groups. A total of 1,048 respondents from 16 countries completed the survey.
Results
Almost half (46%) of 980 respondents reported having tried legal psychoactive substances for the management of their FND symptoms and, on average, nicotine, alcohol, and cannabidiol were reported as modestly effective. Additionally, 15% of respondents reported having used illicit substances, mostly cannabis, to manage FND, with the majority reporting moderate effectiveness and experiencing no or minimal physical (90%) and psychological (95%) sequelae. Many respondents (46%) reported that they would be willing to try medically supervised psychedelic therapy (with 19% of respondents ambivalent) if it were found to be safe and effective.
Conclusions
Many people with FND seek alternative means of symptom management outside usual medical care, including legal and illicit psychoactive substances. Further research exploring novel treatment options, such as psychedelics, in FND may be warranted.
Research Summary of 'Views on Using Psychoactive Substances to Self-Manage Functional Neurological Disorder: Online Patient Survey Results'
Introduction
Functional neurological disorder (FND) encompasses motor and/or sensory symptoms—such as seizures, movement disorders, weakness, and sensory abnormalities—that are not explained by other neurological diseases but instead reflect altered access to voluntary movement control and/or normal sensory perception. Disability in FND can be severe and long-standing. Psychological and physical therapies are the principal evidence-based treatments, yet high-quality evidence is limited, access is often poor, and many patients continue to experience persistent or worsening symptoms despite best-practice care. Pharmacological options are similarly sparse, although specific cases (for example, therapeutic sedation for functional dystonia) suggest some potential utility. Because effective and accessible treatments are lacking, some people with FND may seek alternative self-management strategies, including legal and illicit psychoactive substances. Earlier research and case reports suggest such substances are used in other neuropsychiatric conditions and that there is renewed clinical interest in agents such as ketamine, MDMA, cannabis compounds, and classical psychedelics. Butler and colleagues therefore conducted a large online survey to characterise the prevalence and subjective effectiveness of legal and illicit psychoactive substance use for FND self-management and to assess patient views on medically supervised psychedelic therapy as a potential novel treatment avenue.
Expert Research Summaries
Go Pro to access AI-powered section-by-section summaries, editorial takes, and the full research toolkit.
Study Details
- Study Typeindividual
- Journal
- Topics
- Authors
- APA Citation
Butler, M., Seynaeve, M., Bradley-Westguard, A., Bao, J., Crawshaw, A., Pick, S., Edwards, M., Nicholson, T., & Rucker, J. (2023). Views on Using Psychoactive Substances to Self-Manage Functional Neurological Disorder: Online Patient Survey Results. The Journal of Neuropsychiatry and Clinical Neurosciences, 35(1), 77-85. https://doi.org/10.1176/appi.neuropsych.21080213
References (19)
Papers cited by this study that are also in Blossom
Sewell, R. A. · Neurology (2006)
Di Lorenzo, C., Di Lorenzo, G., Coppola, G. et al. · Cephalalgia (2015)
Schindler, E. A. D., Sewell, R. A., Gottschalk, C. H. et al. · Neurotherapeutics (2021)
Bornemann, J., Spriggs, M. J., Carhart-Harris, R. L. et al. · Frontiers in Psychiatry (2021)
Grob, C. S., Mithoefer, M. C., Brewerton, T. D. · Lancet Psychiatry (2016)
Rucker, J., Young, A. H., Jelen, L. A. et al. · Journal of Psychopharmacology (2016)
Vendrell-Serres, J., Soto-Angona, Ó., Rodríguez-Urrutia, A. et al. · Therapeutic Advances in Psychopharmacology (2021)
Butler, M., Seynaeve, M., Nicholson, T. R. et al. · Therapeutic Advances in Psychopharmacology (2020)
Feder, A., Costi, S., Rutter, S. B. et al. · American Journal of Psychiatry (2021)
Mithoefer, A. T., Mithoefer, M. C., Feduccia, A. A. et al. · Lancet Psychiatry (2018)
Show all 19 referencesShow fewer
Jelen, L. A., Young, A. H., Stone, J. M. · Journal of Psychopharmacology (2020)
Niciu, M. J., Shovestul, B. J., Jaso, B. A. et al. · Journal of Affective Disorders (2018)
Rucker, J., Iliff, J., Nutt, D. J. · Neuropharmacology (2017)
Spriggs, M. J., Kettner, •. H., Carhart-Harris, •. R. L. · Eating and Weight Disorders - Studies on Anorexia Bulimia and Obesity (2020)
Krediet, E., Bostoen, T., Breeksema, J. J. et al. · International Journal of Neuropsychopharmacology (2020)
Krebs, T. S., Johansen, P. Ø. · Journal of Psychopharmacology (2012)
Garcia-Romeu, A., Griffiths, R. R., Johnson, M. W. · Current Drug Abuse Reviews (2015)
Reiche, S., Hermle, L., Gutwinski, S. et al. · Progress in Neuro-Psychopharmacology and Biological Psychiatry (2018)
Moreno, F. A., Wiegand, C. B., Taitano, E. K. et al. · Journal of Clinical Psychiatry (2006)
Cited By (2)
Papers in Blossom that reference this study
Lewis, E. C., Jaeger, A., Girn, M. et al. · Journal of Psychopharmacology (2024)
Kopra, E., Ferris, J. A., Winstock, A. R. et al. · Journal of Psychopharmacology (2023)
Your Personal Research Library
Go Pro to save papers, add notes, rate studies, and organize your research into custom shelves.