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Living with M.E.

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Scottish hub

Scottish hub

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.

Inform M.E.

A Scottish Government funded project to educate health and social care professionals and improve the health and social care support available to people with M.E. 

Inform M.E. will do this by:

  • empowering people affected by M.E. in Scotland to share personal stories of appropriate care and support
  • facilitating three roundtable meetings for key health and social care professionals
  • producing a series of specialist webinars and professional briefings

We will be focusing on identifying and sharing examples of good practice, increasing knowledge and understanding of the illness, and supporting project participants to identify where they can lead and make change and contribute to improving the health of people with M.E. living in Scotland.

If you would like more information or to be involved, please get in touch with our Scotland Project Co-ordinator.

Mentor M.E.

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. Find out more on our Mentor M.E. page.

M.E. matters now: a manifesto for Scotland

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. 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.

Living and learning 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.

Hear me, influence M.E.

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 a series of short films on self-management. These were made by people with M.E. and include tips for managing and preserving energy during everyday tasks
  • supported local M.E. groups to raise awareness of M.E. by providing leaflets, posters and booklets for them to distribute
  • included references and signposting for people with M.E. in Scotland in our Newly diagnosed with M.E. booklet
  • published a campaign toolkit for use in Scotland, including core statistics and key information on M.E. This empowers individuals and groups to inform and influence decision-makers around health, social care and welfare issues.
  • undertaken a qualitative study of the experiences of people with M.E. around the introduction of Personal Independence Payment in Scotland, to feed into the Scottish Parliament Welfare Reform Committee and, more broadly, discussions with MSPs about welfare reform needs in Scotland. Initial findings were presented at a Scottish Parliament event on May 2015 and used in our written and oral evidence to the Committee on the future of Social Security in Scotland in September 2015. The final report from this study, A deeply dehumanising experience, was published in March 2016.

GPs and M.E.

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.

Telling your M.E. story

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.

Reducing isolation

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.