Action for ME’s 2025 Big Survey

Why large-scale charity surveys are so important for ME research and treatment

Today’s guest post is from Dr Katharine Cheston. Katharine is a postdoctoral researcher in the Department of Sociology and Institute for Medical Humanities, University of Durham. She is working with Action for ME on their 2025 Big Survey. Katharine has her own experience of ME, which she has written about for the BMJ and the Polyphony.

---

In October 2025, Action for ME launched their Big Survey for adults and young people living with ME in the UK. The 52 questions explore a wide range of experiences, from access to NHS healthcare to the financial impact of ME. Every question was developed alongside people with lived experience of ME and Long Covid and shaped by community feedback.

Working with Action for ME on the Big Survey, I’ve been struck by the important role that large-scale, charity-led surveys like this can play in building a clearer picture of what life with ME is really like – and in providing evidence that can drive change. In this post, I explain why projects like this are so valuable, and how you can get involved.

Why surveys like this matter

Research funding for ME is scandalously limited. In this context, projects like the Big Survey become even more vital, both for charities and researchers.

For Action for ME, findings from the Big Survey shape their organisational strategy and inform all aspects of their work pressing government, policy makers and the NHS for meaningful change for people with ME. Its value is reflected in the fact that Action for ME repeat the Big Survey roughly every five years. This means that it provides an up-to-date, evidence-based picture of life with ME. Previous Big Surveys have played a key role in shaping developments in ME policy and practice. Action for ME used the data gathered in the last Big Survey (2019) to respond to the National Institute for Health and Care Excellence (NICE) as part of the consultation to develop the 2021 NICE guideline.

For researchers like me, there is little in the way of high-quality, peer-reviewed research on ME to draw from. In its absence, large-scale charity-led surveys like this can help dispel myths and prejudices that still circulate around this illness. For example, some of the clinicians I worked with last year strongly believed that people with so-called ‘medically unexplained’ illnesses (a category into which ME is often pulled) were ‘frequent attenders’ of healthcare services. I was able to share that, actually, over half of Big Survey respondents in 2019 were not currently in contact with any NHS healthcare professional about their ME. It didn’t matter that these findings hadn’t been published in a peer-reviewed article: what mattered was being able to tell a story that contradicted widely held assumptions, and the Big Survey data provided a powerful way of doing this.

What’s different about the 2025 Big Survey

The 2025 Big Survey has been designed to fill critical gaps in our understanding of ME – such as who is able (and who is not able) to access NHS preventative health screenings. To our knowledge, this will be the first time that this information will be gathered, even though the ME community has been aware of these issues and their impacts for many years. Asking these questions will allow us to bring this knowledge into the open, and to share it with academic researchers and policy makers.

We also included questions on the financial cost of ME. Of course, creating an official estimate of the economic impact of ME is beyond the scope of this kind of project. However, having data that give an indication of these costs will be incredibly useful for Action for ME, as well as for ME researchers (for example, in supporting funding applications).

This year, Action for ME’s Research Team are working closely with Dr Audrey Ryback, from the University of Edinburgh, who will use the Big Survey data to study age of ME onset, triggers, and heritability. This means that the Big Survey will directly feed into, and inform, ongoing biomedical research. We are so excited to be working with Audrey, and to see what she can uncover within the data.

Another major difference is that this year’s Big Survey has been produced in collaboration with Durham University’s Institute for Medical Humanities, where researchers use methods from across the arts, humanities and social sciences to bring to light experiences of illness that are marginalised, unacknowledged, or invisible. In 2023, researchers from the Institute were awarded a large grant from Wellcome to establish the Discovery Research Platform for Medical Humanities, which aims to bring these hidden experiences to the forefront of health research. In 2026, I will be funded through this grant to analyse the Big Survey data and produce publications through which the impact of ME can be shared more widely with the academic community as well as with policy makers.

This collaboration has also enabled us, for the first time, to gain approval from a university ethics committee so that we can publish the results of the 2025 Big Survey in an academic journal. This means that the experiences captured by this charity-led survey can contribute to peer-reviewed evidence, giving them greater visibility, credibility, and influence within the academic community.

One of the Big Survey’s key strengths is the space it gives people to share, in their own words, how ME affects their lives. Analysing these free-text responses takes time and care, but this kind of qualitative analysis produces rich and powerful insights that are ideally suited to help people working in research, healthcare and policy understand what living with ME actually looks and feels like. Having the time, through this collaboration, to do this kind of analysis will ensure that we can make the most of the data we are entrusted with, and that the energy people put into sharing their stories is not wasted.

A call to action

We have already had over 3000 responses to the Big Survey, and we are so grateful to everyone who’s already had their say. There’s still time to join them: the Big Survey is open until 27 January.

If you have ME or Long Covid and you’ve not taken part yet, we’d love to hear from you. The main survey is aimed at adults in the UK, who live with ME or who experience ME symptoms as part of their Long Covid. There is a separate, shorter survey for children and young people (aged 17 and under) and their parents/guardians.

We recognise that completing the Big Survey can be a huge undertaking for people with ME. The online survey will save your progress, allowing you to pause and return to it later. We also have a version you can print, fill out, and either scan or post back to us.

However you fill it out, you don’t have to answer every question: you can skip questions or whole sections. Every piece of information that you are able to give us is valuable. For those with severe or very severe ME, someone else is welcome to fill out the survey on your behalf – and we may be able to offer telephone support (please see the FAQs on Action for ME’s Big Survey webpage for more information).

With this year’s Big Survey, we’re aiming for our biggest response yet, so that we can create the biggest impact. You can help make this a reality, so that charities, researchers and clinicians have the data they need to be #ThereforME.

Acknowledgements

Katharine would like to thank the Foundation for the Sociology of Health and Illness, who are funding her current programme of postdoctoral work, through a Mildred Blaxter fellowship. In addition, the Big Survey work has been supported by the Discovery Research Platform for Medical Humanities at the Institute for Medical Humanities, Durham University which is funded by Wellcome under grant reference 226798/Z/22/Z.

We are hugely thankful to have worked with a brilliant Patient and Public Involvement Group throughout the 2025 Big Survey, whose expertise has been both instrumental and invaluable to the project. We are also grateful to Dr Harriet A. Carroll and the members of the Science for ME forum, whose feedback shaped the final version of the survey.