Action for M.E.

Day

Wednesday 15 June

Time slot

09:30-10:30

This event took place over 2 years ago

Room

M3
Wheelchair accessible

Contact

Avril McLean

Topics

Health and social care Wellbeing Families and communities

Who was the event aimed at?

Project/line managers

Who spoke at this event?

Alec Finlay, Artist and Poet, creator or poem and who lives with M.E. and Long Covid. More information on Alec here: https://www.alecfinlay.com/.
Hannah Meikle, an Action for M.E. volunteer who became unwell with M.E. aged 21. For the last 7 years she has been working on her recovery as well as supporting others with M.E. through Action for M.E.'s peer mentoring project and is now a Volunteer Evaluator.

Event summary and materials

What was covered in your sessions?

Session launched a book:

Descriptions: a patient-led description of M.E. composed from the words of people with M.E.

In 2021, we supported Alec Findlay, an internationally recognised artist and poet, who lives with M.E. and Long Covid to work on a found poem based on people’s own words about their experiences. Together we released a survey with questions covering the effects of living with M.E. on people’s lives. Alec used their words, anonymously, to create a collaborative description of the illness and its impact. He said, “It’s been the most painful project I have ever worked on, and also one of the most important”.

Was there any useful feedback or reflection from the participants?

Participants said it increased their awareness and understanding of the illness and how it affected people’s lives. For the people who had contributed to the poem who came along it gave them a tremendous sense of pride and connection when their normal experience is of invisibility and being invalidated. Some people said they were going to take action such as signing up for Decode M.E. the world’s largest genetic study on M.E./CFS or volunteer for us. Other organisation said they would get in touch to follow up on finding out more about how they can support people with M.E. 

How people can find out more or get involved in your work?

We have lots of information, resources and support to offer people living with M.E. on our website. In Scotland we have an Advocacy service that can support people with M.E. to advocate on issues and barriers that relate to their M.E./CFS. We also offer Self Advocacy workshops and hope to host one on Employment and M.E. on the 28th of July. We also have a medical education project, Learn about ME that offers a free online CPD module for healthcare professionals. We also offer a series of podcasts and a webinar aimed at Social Care and Social Work professionals.