Every 5 years, we develop our Big Survey. It enables us to gather large amounts of data which can then be analysed and used to support our wider work and illustrate the impact of ME.
Our last Big Survey was completed by over 4,000 children, young people, and adults, in 2019.
The 2025 Big Survey is a collaboration between Action for ME and the Discovery Research Platform for Medical Humanities at the Institute for Medical Humanities (IMH), Durham University. Postdoctoral researcher, Dr Katherine Cheston, is working with us to help support the survey's development, data collection, and subsequent analysis.
You can find out more information about the Discovery Research Platform for Medical Humanities at the IMH, and Dr Cheston's involvement further down on this page.
The Big Survey is open to people living in the UK with ME, whether or not they have a diagnosis.
It is also open to people living in the UK with long Covid and who experience ME symptoms, even if they don't have a diagnosis.
If you are unable to complete the survey yourself, a carer is welcome to fill it out on your behalf.
The survey will open online on Monday 13 October. If you would like to register your interest and be sent a link once the survey is live, please complete this form.
The views and experiences of people affected by ME crucial to our work and are regularly used to support our awareness raising and influencing policy, service development, and research.
However, it is also essential that we keep this data up-to-date to account any recent research developments, changes in service provision, and policy changes, and how they impact the lives of people with by ME.
Responses will be anonymised to be used by Action for ME, and our research collaborators, in their work. They will also be shared with Dr Audrey Ryback, University of Edinburgh, who will use the data to study the age of ME onset, triggers, and heritability.
For more information, please visit the FAQs section below.
Dr Katharine Cheston is Mildred Blaxter postdoctoral fellow in the Department of Sociology and the Institute for Medical Humanities at Durham University. Since March 2025, she has worked with Action for ME to redesign their ‘Big Survey' as part of a collaboration between Action for ME and the Discovery Research Platform for Medical Humanities, which is based at Durham University and funded by Wellcome.
Supported by Wellcome, the Discovery Research Platform for Medical Humanities at Durham University empowers humanities and social science researchers, people with lived experience, and health, creative and voluntary sector professionals to co-develop new and experimental approaches to tackling health challenges, including mental health and health inequalities.
The Institute for Medical Humanities at Durham University conducts research into ‘hidden experience’ and investigates experiences of health and illness which are marginalised, difficult, unspeakable, unacknowledged, or invisible. It aims to transform knowledge within and beyond the critical medical humanities, improve health policy and practice, and benefit the lives of communities and individuals.
Yes, you can. Our Big Survey is open to people with either suspected or diagnoses ME.
Yes, you can, if you experience ME symptoms (debilitating fatigue, post-exertional malaise, sleep disturbance, cognitive difficulties). Where the survey asks about ‘your ME’, please feel free to interpret this as ‘your ME symptoms’.
Yes, we are using the Qualtrics survey platform because it has a save and return function. This means that you can exit the survey and come back to it later. The survey saves your progress whenever you click to go forward to the next page, or back to the previous page.
Please note that, in order for this function to work, you need to use the same device (e.g., phone, laptop) and the same internet browser (e.g., Safari, Google Chrome). The save and return function works by using cookies, so it will not work on ‘private browsing’ or ‘incognito’ modes.
No. Every question on this survey is optional. You can skip questions and whole sections. Every piece of information you give us is valuable and is hugely appreciated.
The survey will close at 11.59pm on Tuesday 27 January 2026. Please make sure that you have finished the survey and submitted your responses before this date.
Your responses will only be shared with us if you finish the survey. Any incomplete responses will be deleted when the survey closes on 27 January 2026. If you start the survey but later decide that you no longer want to take part, you can simply exit the survey and your responses will not be shared with us.
Yes, absolutely. If you are unable to fill out the survey, a friend, family member or carer is welcome to fill it out on your behalf.
If this is not possible, we may be able to provide telephone support. This would involve completing the survey with a member of our team, over the phone. To arrange this, please email research@actionforme.org.uk or phone 07548 558 921 and we will get back to you as soon as we can.
You can download a PDF version of the Big Survey that you can print out and fill in.
To return your completed survey to us, please scan or take photos of the pages and email them to research@actionforme.org.uk. Alternatively, you can send completed copies back to us by post, using the address below. Please return printed copies by 27 January 2026.
FAO Research Team
Action for ME
Unit 2.2 Streamline
436-441 Paintworks
Bristol
BS4 3AS
Action for ME runs the Big Survey every five years, and the data produced informs all aspects of the charity’s work to improve the lives of people with ME. We will also use the Big Survey data to produce (for example) policy reports, publications, briefings, presentations, and factsheets.
This year, anonymised survey data will be shared with Dr Audrey Ryback, University of Edinburgh, who will use the data to study the age of ME onset, triggers, and heritability.
This year, the Big Survey is being completed as part of a collaboration with the Institute for Medical Humanities, Durham University. This collaboration has been supported by the Discovery Research Platform for Medical Humanities at the Institute for Medical Humanities, Durham University, which has been funded by Wellcome under grant reference 226798/Z/22/Z.
Dr Katharine Cheston, the researcher working on the Big Survey with Action for ME, has lived experience of ME and used to volunteer for Action for ME (2014-2016). Dr Cheston will spend three months analysing the Big Survey data and will produce detailed reports and publications. Having a researcher involved in this process will allow Action for ME to communicate the impact of ME to new audiences.
If you still have a question about the survey itself, please email research@actionforme.org.uk and a member of our team will get back to you as soon as possible.
