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Descriptions: a patient-led description of M.E.

Descriptions: a patient-led description of M.E.

In late 2021, Action for M.E. supported Alec Finlay, an internationally recognised artist and poet, to craft an online survey that enabled people to describe their experiences of life with M.E. More than 200 people responded.

Using people’s words from their responses to the survey questions, Alec created a found poem that powerfully describes living with M.E. The poem is now available to download, buy and listen to.

Alec felt this work could put a light on the hidden, invisible nature of the condition along with the harmful impact of being disbelieved on people’s health and ability to live.

The survey anonymous with the option for people to give their names and be credited as a contributor to the poem. We would like to thank all contributors for using their energy and time to share their experiences to develop to the final poem.

June 2022 book launch

Descriptions was launched at the Scottish Poetry Library in June 2022. Chief Executive Sonya Chowdhury joined Alec Finlay at the event to answer questions about the collaboration and inspiration behind the poem. The event illuminated the impact of this neglected illness on people's lives and the broader story of living with a chronic invisible illness like M.E.

Printed copies of Descriptions are now on sale in our shop here, with the charge covering the production and postage costs.

We are also delighted to share that Scottish Actor Mark Bonnar who you'll remember from Celebrity Catchphrase earlier this year has recorded the audio version of the poem, available on Soundcloud.

A free PFD version is also available for you to read and download.

Artist Alec Finlay

Alec Finlay became ill with M.E. at 21. His mum, Sue Finlay, founded Action for M.E. in 1987 after submitting an article about M.E. to the Observer and receiving 15,000 letters in response.

Alec’s work as an artist takes various forms and media, including poetry, sculpture, collage, audio-visual, neon and new technologies.

Reflecting on this project Alec has said:

Descriptions has been the most painful project I have worked on, and also one of the most important. The pain came in reading so many accounts of loss, anguish, and experiences of prejudice, but that is also what makes this work so important. I was humbled by the length and depth of the responses, and aware of the energy this will have cost. It was a reminder that this community has felt so erased for so long.

Long Covid and podcast episodes

Alec also has Long Covid and has taken part in a couple of podcasts to talk about his experiences of M.E. and becoming ill with Long Covid in March 2020. Alec uses these podcast episodes to talk about what other illnesses like Long Covid can Learn from M.E. and the experiences of people with M.E.

The first podcast, Learn about M.E. and Long Covid (May 2021) is part of our Learn about M.E. project.

The other is Covid Matters: The journey to Scotland’s Covid Memorial (July 2021) which features Alec talking about the importance of pacing and recuperation, and the role art can play in collective recovery.

Further information about M.E.

The 30-minute film Voices from the Shadows illuminates vital aspects of the illness and the impact of disbelief on the people with M.E.

Action for M.E. provides services and support for people of all ages who have M.E. We also support professionals and families by providing information and support and resources.

Our online forums are safe spaces where children and adults can connect and feel less isolated.

Our Listen to M.E. helpline offers a listening ear for people. You don’t need to have a diagnosis of M.E. and families and carers can call for support.