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.
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.
Myalgic Encephalomyelitis (M.E.), sometimes diagnosed as Chronic Fatigue Syndrome (CFS) is a long-term (chronic) fluctuating illness that causes symptoms affecting many body systems. Between December 2013 and February 2014, 2,018 people with M.E./CFS took part in a survey run by Action for M.E., the UK’s leading charity for people affected by M.E./CFS. This report presents key initial findings.
This report presents key initial findings from the 197 people with M.E. in Scotland (out of 2,081 total UK respondents) who took part in Action for M.E.’s 2014 health, welfare, employment and education survey. It was launched at our Scottish Parliament event during M.E. Awareness Week in May 2014.
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.
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.
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.
Our 2014 Digital Storytelling project, led by independent professional storytelling consultant Michael Williams, resulted in a number of films produced by people with M.E. in Scotland, telling the story of their experience of the condition. Resulting from this project, this toolkit guides you through the process of making your own digital film, outlining what equipment you need, how best to use it and provides some top tips on film-making.
Our manifesto asks MPSs to help dismantle the barriers faced by the 20,000 people with M.E. in Scotland. Please ask yours to pledge their support.
Our template letter enables you to easily write to your MP inviting them to the All-Party Parliamentary Group on M.E.'s awareness-raising drop-in session for MPs on Wednesday 11 May. Lunch will be provided, and MPs can pick up a new M.E. information pack with key facts and details of how they can support constituents affected by M.E.
Our manifesto asks Welsh Assembly Members to help dismantle the barriers faced by the 12,000 people with M.E. in Wales.. Please ask yours to pledge their support.
Our manifesto asks MLAs to help dismantle the barriers faced by the 7,000 people with M.E. in Northern Ireland. Please ask yours to pledge their support.
This information resource was developed by the All Party Parliamentary Group on M.E. in May 2016, and is intended to help MPs better support people with M.E.
Notes from the 17 March 2016 meeting of the All Party Parliamentary Group on M.E.
Notes from the 1 July meeting of the All Party Parliamentary Group on M.E.