What is M.E.?

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

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 M.E. Using people’s words from their responses to the survey questions, Alec created a found poem that powerfully describes living with M.E.

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.


Book Launch – June 2022

Descriptions will be launched at the Scottish Poetry Library in June this year. Action for M.E. and Alec hope that they can use this event to illuminate the impact of this neglected illness on people’s lives and the broader story of living with a chronic invisible illness.

Hard copies of descriptions will then go on sale. The cost of a hard copy will just cover production and postage costs for the book. An online and audio version of the poem will be available for free from this website following the launch on Wednesday 8 June 2022.


Artist

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 the Learn about M.E project. The other is Covid Matters: The journey to Scotland’s Covid Memorial: Alec Finlay on Long Covid, M.E., the importance of pacing and recuperation, and the role art can play in collective recovery in July 2021.


Questions and survey

The survey had 35 questions and it was made clear that people did not need to answer all questions, just the ones that they felt able to complete.The survey closed on the 31st of December 2021 and over 200 people contributed.

All responses remained anonymous but people could give their names and be credited as a contributor to the poem.


Further information on M.E.

Further information on M.E. is available here. M.E. can have a wide range of symptoms and vary in levels of severity. The NICE guideline on M.E. was updated in 2021 and now lists 4 levels of severity.

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


Information and support

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


Connection and Peer support

Action for M.E. offers online forums where people can connect, gain support and feel less isolated. Feeling alone, isolated and not understood is a common feeling for many people with M.E. Listen to M.E. is a new service that offers a listening ear for people. You don’t need to have a diagnosis of M.E. and families and carers can call in for support. The service will be piloted to run for 2 hours each week-day from Monday 23rd May 2022.