In late 2021, Action for ME supported Alec Finlay, an internationally recognised artist and poet, to craft an online survey that enabled people to describe their experiences of life with ME Using people’s words from their responses to the survey questions, Alec created a found poem that powerfully describes living with ME
Alec feels this work shines a light on this hidden, invisible illness and the harmful impact of being disbelieved on people’s health and ability to live.
We sell the hard copy at cost price, to cover production and shipping costs. A free copy is available at https://www.actionforme.org.uk/get-information/what-is-me/descriptions/ and an audio version read by Mark Bonnar can be found at https://descriptions.bandcamp.com/releases.
Guidance for readers
This book is distressing and liable to be upsetting. Support is available from Action for ME for anyone affected by ME, including friends, families and carers. We chose to include the words of people with ME in their original form, without editing. We recognise that people’s experiences vary greatly; this text can only begin to represent the difficulties that individuals endure. We especially advise discretion in terms of sharing the book with younger readers.
If you found the book useful, or would like to support the work of Action for ME, then please consider making a donation.
£7.50 - includes postage within the UK
+ £6.50 for European postage
+ £10 for postage outside of Europe (excluding USA*)
*we can't currently accept orders from the USA due to changes in customs duties and tariffs.
