SURVEY: Hidden illnesses – a chance to raise your voice on living with ME

MWH Admin Team News, Survey

Living with an energy limiting chronic illness means that people often struggle to have their voice heard.


Many people with ME feel invisible and that their experiences, concerns and needs are unseen and unmet.

Action for ME are now running a survey to capture people’s descriptions of living with ME and the impact it has on their life. The responses will be used by Alec Finlay, an internationally-recognised artist and poet, to create a collective patient-led description ME. People can download the questions and complete offline by accessing a PDF of the questions here. They only need to contribute to the extent that works for them.

We hope that the result will help to convey their experiences to society and the medical system. We aim to give a voice to as many people as possible so please share this with anyone you know who is living with ME.

The deadline for this survey is the 31 December 2021.

Action for ME offer Information and Support to people, children and families living with ME. People can call them between 10 am and 4.30 most week days on 0117 927 9551 or email: Other professionals working with people with ME such as teachers, carers, social workers and employers can access information on our website about how they can support people with ME.

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