People with M.E. are at the heart of everything we do. Every five years, we consult with people with M.E. in our Big Survey, to gather their experiences of, and insight into, living with M.E. in the UK.
We most recently did this in May 2019, consulting with more than 4,000 young people and adults over three months. Our aims were to:
We received a fantastic 4,038 responses. While this is a considerable number, it's important to remember there are limitations with surveys such as this. The people we surveyed were not a stratified or systematic sample – they were self-selecting, with survey responses skewed towards female respondents over 40 who had been ill four years or more. We didn’t do well enough on a representative geographic spread, with fewer numbers of respondents in Northern Ireland than we wanted, and representation in terms of ethnicity is poor (something we are working on addressing).
Nevertheless, the survey still gave us a huge amount of important data. Sharing our findings with policy-makers, planners and professionals to highlight good practice in some areas, we will show them just how much people with M.E. are being let down in others; and invite the tol work with us to improve access to appropriate care and support.
Our ongoing series of two-page explainers shares key data from our survey on a range of topics.
So far, we have used our Big Survey findings to:
We will also use our findings to:
Donate now and change a life