Why are we running this survey?


We are sharing this survey to invite people living with M.E. to describe their experience of the disease. The responses will be used by Alec Finlay, an internationally-recognised artist and poet, to create a collective patient-led description of the illness.

Alec will use your responses to create a description in your own words. The final text will be a found poem – Alec will use the most expressive of your phrases, without altering them. Descriptions will be published in a book and made available online, as a downloadable PDF, and an audio recording.

None of the responses will be attributed to individuals – they will all remain anonymous. However, everyone who sends a response and supplies their name will be credited as a contributor.

There are a wide variety of questions, but please note that we don’t expect you to answer them all. They are intended as a prompt for your descriptions. The questionnaire allows you to start answering, then pause, and return when you are ready to answer more questions.

The questions are arranged in different categories. You don’t need to answer in any particular order.

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 the medical system.

There are 35 questions in these categories: 

Before you had M.E.

Diagnosis and at the beginning

Relationships

Impact on your life

Medical treatment and Self Management

Describing M.E. and its impact on your life

M.E. and what needs to be addressed by others.

You can answer as many or as few as you want or are able. 

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 31 December 2021.

Before you had M.E.

Question Title

* 1. If you were aware of ME before you became ill how did you perceive it?

Diagnosis and at the beginning

Question Title

* 2. What age were you when you first become ill with ME?

Question Title

* 3. In a few sentences can you describe the onset of your ME (the first few weeks)?

Question Title

* 4. In a few sentences can you describe the first six to nine months of your ME and what the impact was on your life?

Question Title

* 5. If you could speak to yourself as the person who first became ill is there one piece of advice you would give?

Relationships

Question Title

* 6. Does anyone else in your extended family have ME? What relation are they to you?

Question Title

* 7. In a few sentences can you describe how ME has affected your family relationships?

Question Title

* 8. In a few sentences can you describe how ME has affected your friendships?

T