Evidence behind The Untold Side
Research & Resources
A working evidence library for people with epilepsy, families, carers, advocates and anyone who wants to check where information comes from.
Not every source does the same job
A classification paper, a national clinical guideline, a patient-information page and a historical archive answer different kinds of questions. The Untold Side tries to use the source that fits the claim rather than treating every link as equal evidence.
Global definitions, classification and public health
World Health Organization — WHO
Useful for the global picture: prevalence, treatment gaps, public-health burden, stigma and inequalities in access to diagnosis and treatment. WHO estimates that around 50 million people worldwide have epilepsy and that nearly 80% live in low- and middle-income countries.
International League Against Epilepsy — ILAE
The main professional source used here for epilepsy definitions, seizure terminology and international classification. The ILAE updated its operational seizure classification in 2025 and maintains current and archived definition/classification documents.
2025 seizure classification →
ILAE definitions and classifications →
UK clinical guidance and public information
NICE NG217
NICE guidance is a core source for UK diagnosis, treatment, safety, referral, comorbidities, SUDEP, specialist services and information/support. NG217 was published in 2022 and updated in January 2025.
NHS
Useful for clear public-facing information about symptoms, diagnosis, treatment, emergency action, driving and support in the UK. The NHS page also signposts national epilepsy organisations.
UK information, support and lived-experience organisations
Epilepsy Action
UK charity information, helpline and support, alongside resources for healthcare, education and care-sector professionals. It also supports research through public involvement, recruitment and dissemination.
Epilepsy Society
UK information and support with detailed material on diagnosis, seizures, treatment, safety and research. Its current diagnosis information emphasises that no single test can confirm or exclude epilepsy on its own.
Peer-reviewed research
For questions that go beyond public guidance, The Untold Side uses original studies, systematic reviews, meta-analyses and consensus papers. One paper is not automatically “the answer”: study design, sample size, bias, consistency with other evidence and clinical relevance all matter.
PubMed
A major biomedical literature database. It is useful for finding individual epilepsy studies and reviews, but inclusion in PubMed does not by itself mean a study is high quality.
Cochrane
Cochrane reviews bring together evidence from multiple studies using systematic methods. They can be especially useful when comparing treatments, although every review still needs to be checked for date, included evidence and applicability.
How we read research
- prefer systematic reviews, major guidelines and consensus documents when answering broad clinical questions
- use individual studies when they answer a narrower question or when review evidence is limited
- check the population studied: adults, children, a particular syndrome or a specific seizure type may not generalise to everyone
- separate association from causation
- state uncertainty instead of turning limited evidence into certainty
- check publication date and whether later classifications or safety guidance have changed the context
Global advocacy and lived-experience policy
International Bureau for Epilepsy — IBE
IBE is the international network focused particularly on the social impact of epilepsy, rights, stigma, quality of life and advocacy. It works through chapters in more than 100 countries and alongside professional and global-health partners.
Historical archives
Historical claims need historical sources as well as modern interpretation. For the history section we may use digitised archives, institutional records, contemporary medical writing and peer-reviewed history scholarship, while making clear when older terminology is offensive, obsolete or scientifically wrong.
Queen Square Archives, UCL
The Queen Square Archives include records from the National Hospital for Neurology and Neurosurgery and material relating to the development of neurology, epilepsy care and figures such as Hughlings Jackson and Victor Horsley.
For families, carers and people living with epilepsy
If you are looking for understandable information rather than research papers, start with NHS, Epilepsy Action, Epilepsy Society and the permanent pages in our Understanding Epilepsy library. For international public-health context, use WHO and IBE.
For professionals, students and researchers
Start with ILAE classifications and definitions, NICE evidence-based guidance where UK practice is relevant, PubMed and Cochrane for literature searches, and the original paper or guideline whenever a claim depends on precise wording, methods or statistics.
How The Untold Side uses sources
We use research to establish facts, then explain them in original language. Medical evidence, historical evidence, personal experience and opinion are labelled and kept distinct. We do not copy another organisation’s article and rewrite a few words around it.
The Untold Side Companion App
A free practical companion for recording seizures quickly, adding recovery and witness details later, keeping medication and note records, printing summaries, and creating local backups.
Companion App — install, backup and restore instructions →
Medical note: External links are provided for research, guidance and support. Their inclusion does not mean every external page is suitable for every person’s medical situation. Clinical decisions should be made with an appropriate healthcare professional.