Action for M.E. – Self Managment IMPACT Fund

Kat Allen from Action for M.E. discusses their experience of being funded through the Self Management IMPACT Fund.

Action for M.E. takes action to end the ignorance, injustice and neglect faced by people with M.E. They do this by meeting need now to improve the lives of people with M.E.  while taking action to secure change for the future.

Action for M.E. had 2 projects funded by the Self Management IMPACT Fund, both of which had a storytelling element to support people to use storytelling as part of their self management. 

Kat Allen from Action for M.E. had been doing some work with Michael Williams, a storytelling facilitator, and really saw the potential of storytelling to give people living with M.E more of a voice and support their self management. Based on this and discussions with their members the digital storytelling project was born. On the back of the success of this project , the idea came about for the Living and Learning with M.E. project which brought together people affected by M.E. to share their experiences of managing the condition and to pass on their knowledge to others.

“People were telling us that they didn’t always have the confidence in their ability to tell their own story or to be heard. So we found a way to give people a safe space to share their stories.” – Kat Allen

It became apparent, although not unexpectedly, that a large degree of flexibility was needed to engage with people living with M.E. at a time and place which worked for them and around their self management needs.  Action for M.E. found some innovative ways around these challenges such as working with University of Highlands and Islands to provide a video link for some of the meetings to allow those in rural areas, and with limited capacity were still able to take part in the group activities.

“There was a lot of interest in both projects, one of the things we had to get right was the time that the groups were held and the length of sessions that people could manage. This is something that we had to play about with until we got it right.”

The projects allowed people living with M.E to come together with health professionals, policy makers, academics and the public to share their stories.  This was much easier said than done, however, as it was a challenge to do this practically given the time constraints of professionals and the nature of M.E. but when it came together it was really worth it. The project participants were also involved in producinh two resources to share with both people with M.E. and professionals –  the Digital Storytelling Toolkit and ‘Taming the Gorilla: A Guide to Living and Learning with M.E.’

“The toolkit and Taming the Gorilla have been real legacies of the projects”

Knowing that the ALLIANCE team were there to have a chat and discuss project ideas before applying, and then to discuss any challenges or potential changes during the project was a great source of support for Action for M.E.  Kat also found the opportunities to attend events which linked to the project, but also supported the wider work of the organisation helpful, as well as having members of the ALLIANCE team coming along and supporting their Action for M.E. events too.

“With some funders you can feel cautious about showing your vulnerability but you don’t feel that at all with the ALLIANCE. It’s good to have a funder who genuinely wants to hear about the project learning.”

Action for M.E. have now secured funding from the Transforming Self Management in Scotland fund to set up a new peer support network across Scotland for people affected by M.E., an idea which was championed by those who took part in the Living and Learning with M.E. project.  They continue to use the resources and storytelling as a key part of their work with individuals with M.E.