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Share your story

People affected by ME, their stories, and their experiences are at the heart of everything we do. Whether through shaping research studies such as DecodeME through PPI, or raising vital awareness and understanding through our press and media work, your voice can help us secure positive change for the future.

Sharing your experience of ME is a powerful way of helping raise awareness of the condition and its impact.

It also helps others living with ME know that they are not alone.

If you are interested in sharing your story on our website, in one of our publications, featuring in one of our campaigns, or being a media case study (someone we contact when a journalist gets in touch, asking to speak to someone affected by ME), please complete this Google Form.

It's fine to write as much or as little as you like, and skip any questions you don't feel able to answer.

You can do this as someone with ME, or as a carer for someone with ME.

If we get a call from a journalist who wants to speak to someone about what it's really like to have ME, we may contact you.

It will most likely be for local or national newspapers but occasionally we need case studies for radio or even TV.

Usually journalists will want to speak to you over the phone.

If they're filming you or need a picture, they'll probably come round to your house - with your permission of course. If it’s for a local TV or radio studio, the journalist will often arrange transport for you.

We will never give out your contact details to a journalist without contacting you first to check that it’s OK. Thank you for helping to raise awareness of ME.

We will keep any personal information you give us safe and secure, and we will never sell or swap your details. See our privacy policy for further details.

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