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Descriptions project - Sharing M.E. Experiences

November 09, 2021

To shine a light on the difference in M.E. experiences, we want to invite you to describe your experience of the disease for a new art project. The responses will be collated by Alec Finlay, an internationally recognised artist and poet, to create a collective patient-led description of the illness. The final text will be a found poem – Alec will take the most expressive phrases, without altering them. All combined to be published into a book and made available online, as a downloadable PDF and then into an audio recording.

All contributions will remain anonymous. In the event you want to share your name, you will be credited as a contributor.

How to get involved

We have created a survey for you to share your experience of living with M.E. We are aware there are a wide variety of questions, but these are designed to be a prompt for your description. We understand this could be an energy-consuming task for some of you, so we have designed the questionnaire to be started, paused, and resumed with no time limit. Alternatively, you can download the survey questions into a PDF to complete at a later stage in this link. Once you complete the questions you wish to answer; you can email them to

The questions have been organised into different categories with no need to answer in any order. You do not need to answer all the questions.

Please contribute to the extent that you are able; every submission will be valued. We hope that the result will help convey your experiences to society and also medical professionals. Please include your name, but remember that, while all the contributors will be credited, none of the text will be identified with an individual. The deadline is Friday 31st December 2021.

You can take part in the survey, that is available to complete on survey monkey here.