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2019 Big Survey: key results

Every five years, our Big Survey asks people with M.E. about their experiences of healthcare, symptom management and other support. We most recently did this in May 2019, consulting with more than 4,000 young people and adults over three months. This briefing combines three of our two-page explainers, with key survey findings on the impact of M.E., pacing and GET/CBT.

Living with M.E.


2019 Big Survey: severe M.E.

Key findings from our 2019 Big Survey of more than 4,000 people, focusing on severe M.E. and its impact. Every five years, our Big Survey asks people with M.E. about their experiences of healthcare, symptom management and other support.

Living with M.E.


Families facing false accusations: our survey

The results of our 2017 survey into the experiences of families affected by M.E. who’ve faced false accusations of abuse, neglect and fabricated/induced illness, which show that one in five families have been subject to child protection referrals as a result.

Children and young people with M.E./CFS


Spotlight on specialist services

Action for M.E. believes that everyone with M.E. is entitled to personalised, patient-led healthcare that best meets their needs. This report reveals how Clinical Commissioning Groups, Health Boards and Health and Social Care Trusts in England, Wales, Scotland and Northern Ireland are failing to meet these needs - and what we are doing about it. Published July 2017.

Living with M.E.


A deeply dehumanising experience

This Action for M.E. report highlights how Personal Independence Payment (PIP) is failing to meet the support needs of people with M.E. in Scotland. Published March 2016.

Living with M.E.


“My life stopped...”

This report focuses on the experiences of 298 people identifying themselves as severely affected (out of 2,081 total respondents with M.E.) who took part in Action for M.E.’s 2014 health, welfare, employment and education survey.

Living with M.E. / What is M.E.? / Make a difference


Campaign toolkit

This toolkit offers ideas and tips for a selection of campaigning and lobbying activities. Direct contact from constituents is the best way to achieve impact but we understand that many people with M.E. are too unwell to take part in high energy activities, so this guide focuses on low-energy tactics which can be just as worthwhile.

Living with M.E. / Make a difference


Campaign toolkit for Scotland

Working with people with M.E., we have developed this toolkit with ideas and templates that can support individuals and groups to campaign in Scotland. The idea came out of discussions at Action for M.E.’s open meetings in Glasgow and Lockerbie in October 2014. Developing the toolkit was one of six key activities taken forward from the meetings as part of our Hear me, influence M.E. project, funded by a Big Lottery, Awards for All Scotland grant.

Living with M.E. / Make a difference


Close to collapse

M.E. is a chronic disabling condition that can have a devastating effect on people’s lives. This interim report, based on findings from our 2015 survey, demonstrates the shocking gap between the need for social care, and the provision of appropriate services, for adults in the UK with this disabling condition.

Living with M.E. / What is M.E.? / Employers & teachers / Health & care professionals / Make a difference / Research