There are approximately 21,000 people living with M.E. in Scotland, including around 2,000 newly diagnosed cases each year. We lead a number of projects in Scotland focused on raising awareness of M.E. and empowering those affected by the condition to access care and support. Our work includes holding events, publishing resources, and collaborating with other organisations to highlight M.E. among policy-makers, the press and the public.
For more information about any of the projects mentioned here, please get in touch with our Scotland Project Co-ordinator Kat Allen.
A volunteer peer-mentoring support network for people affected by M.E. in Scotland, Mentor M.E. is a five-year project funded by the Health and Social Care Alliance Scotland (the Alliance) and the Scottish Government from the Transforming Self-Management in Scotland Fund. By providing tailored training and skills development, matching for volunteer mentors and mentees and ongoing one-to-one and group support, we will develop a strong sustainable network led by people living with M.E. Volunteer mentor recruitment began in September 2016: if you are interested in getting involved, please contact Avril McLean, Project Worker on 07753 247099 or by email.
Action for M.E. worked with partners to produce M.E. matters now, a manifesto for the Scottish Parliament elections in May. The manifesto asks potential candidates to help us transform the lives of people with M.E. by ensuring that everyone who has the illness gets access to the support they need. It also tells them what they can do to help us achieve this aim. Throughout 2016, we are meeting with MSPs who pledged their support for the manifesto to discuss how we can work together to improve outcomes for people with M.E.
Ending in March 2016, the Living and learning with M.E. project offered opportunities for people affected by M.E. to come together to ensure that their voices are heard. Taking part in workshops, and collaborating on the production of a self-management resource, people with M.E. were supported to develop skills and reduce the significant isolation that often exists for people with the illness. This led to the launch of our self-management resource Taming the Gorilla, a guide designed to help you to navigate your way through the maze of information available about M.E. informed by the experiences of people living with the illness.
In October 2014 Action for M.E. held two open meetings for people affected by M.E. in Glasgow and Lockerbie as part of our Hear me, influence M.E. project, funded by a Big Lottery, Awards for All Scotland grant. The aim of these meetings was to identify challenges faced by people with M.E. in Scotland, and explore some possible solutions. As a result we have:
Produced in 2010, the Scottish good practice statement on M.E./CFS is formally endorsed by the Royal College of General Practitioners (Scotland) and the Scottish Neurosciences Council. It provides GPs with guidance on the differential diagnosis and clinical management of patients with M.E.
However, our 2014 survey of 50 GPs in Dumfries and Galloway, Fife and Highland found that a large majority (82%) said they had not undertaken any training on M.E., while nearly two thirds (66%) told us they were not aware of the Scottish good practice statement. Our M.E. time to deliver in Scotland report found that 31% had not seen a GP in the past year.
To address this unmet need, we ran a series of professional webinars during 2014 and have produced Managing M.E./CFS: a guide for GPs in Scotland. This short booklet includes key knowledge about the condition, making reference to the Scottish good practice statement throughout, and signposts GPS to sources of professional support and guidance, supporting them to improve outcomes for their patients with M.E.
Our digital storytelling project was funded from the Scottish Health and Social Care Alliance Self management Impact Fund (2013-14). Seven film-makers, all with direct experience of M.E., underwent storytelling and video-making training, producing their own awareness-raising films focusing on personal experience of the illness. Eight short films were shown at Action for M.E.'s Journeys with M.E. public screening, held at the Scottish Storytelling Centre in Edinburgh on M.E. Awareness Day 12 May 2014. We went on to produced a digital storytelling toolkit, which 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.
Large parts of Scotland are very rural, meaning people with M.E. can find themselves doubly isolated. This makes online information and support even more important. Our M.E. Friends Online forum offers a safe and friendly source of peer-support. We have also produced a Skype toolkit for individuals and support groups who want to get to grips with using this software to be in touch with others.