Five year Big Survey
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:
- collect up-to-date information and experiences of M.E., health and social care, employment, education and welfare benefits, specifically Universal Credit.
- identify key trends, including comparing it to our 2014 Time to Deliver survey
- see how the General Principles of Care set out in the NICE guideline are being delivered
- find out the challenges people with M.E. face in accessing care and support that meets their needs.
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.
What did our 2019 Big Survey find?
Our ongoing series of two-page explainers shares key data from our survey on a range of topics.
- The impact of living with M.E., giving an overview of findings on severity, diagnosis, social isolation and support needed.
- Pacing for people with M.E., on how people use pacing to help them manage their symptoms.
- GET and CBT for people with M.E. which shows that, even when people are supported by an M.E. specialist, only one in 10 reported that GET helped manage symptoms, while nearly half reported a worsening effect. CBT makes no difference in almost half of cases and had a worsening effect for one in five.
GET is no longer recommended by the NICE guideline for M.E., and there has been important updates to the advice about how and why CBT should be offered to people with M.E. Find out more on our NICE guideline page.
So far, we have used our Big Survey findings to:
- present at our 2019 annual conference, with a focus on symptom management, using this to prompt a panel discussion by policy and health experts
- submit a response to the NICE guideline development group's call for evidence
- highlight challenges in Wales to the Task and Finish group working on a care pathway
- develop a GP briefing shared with delegates at the Royal College of GP conference
- inform our response to enquiries made by the Scottish Petitions Committee
- engage with candidates in the 2019 general election
- highlight the impact of M.E. in the press and media, including Northern Ireland Healthcare Journal (Jan 2020, pages 18-19)
- update our key website information about symptom management approaches for M.E.
- update information used by NHS Inform in Scotland
- highlight the difficulties faced by people with M.E. to Local Medical Committees when they debated stopping home visits.