Action for ME launches the 2025 Big Survey
- Area of Work: The ALLIANCE
- Type: News Item
- Published: 10th November 2025
Action for ME has opened its 2025 Big Survey, inviting people across the UK to share their experiences of living with CFS and ME.
Action for ME has opened its 2025 Big Survey, inviting people across the UK to share their experiences of living with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). The survey is open to anyone living with ME, whether or not they have a formal diagnosis, and to people with long Covid who experience ME symptoms.
There are two versions of the survey: one for adults aged 18 and over, and another for people aged 17 and under. Run every five years, the Big Survey helps to build a comprehensive picture of life with ME across the UK. The last survey received more than 4,000 responses, providing valuable insight to support research and policy work.
This year’s Big Survey is a collaboration between Action for ME and the Discovery Research Platform for Medical Humanities at Durham University’s Institute for Medical Humanities. Postdoctoral researcher Dr Katherine Cheston is working with the team to support survey development, data collection and analysis. Responses will be anonymised and shared with research collaborators, including Dr Audrey Ryback at the University of Edinburgh, who will study the age of onset, triggers and heritability of ME.
The survey is open until 27 January 2026. You can access both surveys and find out more about the project here.
Working with the community
Action for ME is also exploring funding for a pilot project to work with people with ME in Scotland. The project aims to identify communication tools and resources that can support people exploring or receiving an ME diagnosis. The organisation is keen to hear from those with lived experience to ensure the work reflects the realities of living with ME.
To share your thoughts or find out more, contact the team at scotland@actionforME.org.uk
End of page.
You may also like:
Did you know that the ALLIANCE offers GIRFEC training to professionals and volunteers?
Continue readingThe iMPROVE COP Core Group is seeking two patient representatives from Scotland
Continue readingThe ALLIANCE supports roundtable with the Minister for Public Health.
Continue readingChildren's Health Scotland wants to understand what health and health rights look like for children, young people and families in 2026
Continue readingRespond to Children's Health Scotland's largest National Health Rights Survey before 8 June.
Continue readingThe ALLIANCE hosted a workshop at the SCVO Gathering to explore how we can better navigate difficult decisions.
Continue readingRead about SIAA's manifesto calling on all parties to invest in independent advocacy so that everyone in Scotland can have their voice heard
Continue readingThe refreshed guidance continues to put people at the heart of decision‑making.
Continue readingThe latest set of themes focus on putting straightforward principles into practice
Continue readingThe Scottish Diabetic eye screening programme checks for diabetic retinopathy - when diabetes causes Visual Impairment
Continue readingTwo key Peppa Pig episodes to air on TV in March 2026
Continue readingLet the British Society of Audiology know about your activities for marking the largest global awareness campaign on hearing loss
Continue readingRead manifestos from organisations representing Deafness, Deafblindness and Vision Impairment in Scotland
Continue readingLearn more about the UK’s biggest collection of eye health and sight loss data
Continue readingExplore this new resource and learn about cochlear implants
Continue readingNational Usher Syndrome Helpline launched to provide one-stop support
Continue readingChallenges won't be overcome without cross-sector collaboration that keeps people at the centre.
Continue readingA new support network is here to help people with FND connect and share experiences.
Continue readingShowcasing organisations across Scotland who are taking steps to embed a children’s human rights approach in their work.
Continue reading#TryAToolTuesday raises awareness of free and trusted apps and resources that help people improve and manage their health and wellbeing.
Continue readingTickets available now for workshops from HSTAR Scotland taking place in February and March.
Continue readingMarie Curie has published new analysis showing that almost one in three people in Scotland die without the palliative care they need.
Continue readingNew guides created for trans and non-binary young people
Continue readingThe ALLIANCE manifesto for the 2026 Scottish Parliament Election sets out a positive vision for the next five years.
Continue readingDelivered in partnership with Lingo Flamingo and the Open University.
Continue reading