May is nearly here and that means so is ME Awareness Week and #MillionsMissing! This year, #MEAction Scotland and #MEAction UK are returning to the central theme of #MillionsMissing – drawing attention to the people missing from their previous lives and wider society because of ME.

Most people don’t understand how widespread ME is, or that so many in our community have been ill for decades. We want to flood social media with powerful images that show the reality of life with ME and what people are missing, as well as the loss it also means for carers, families, schools and communities, and ask the question #CanYouSeeMENow?

There are two different concepts for photos we’re asking people to share in the run up to and on 12th May. You can take part in one or both depending on what’s comfortable and possible for you.

Your view with ME

Lots of people with ME spend most or all of their time in one spot – often a bed or a sofa. Many have had healthier people say to them ‘Oh I’d love to spend all day in bed!’ without truly considering what that life is like. 

We’re encouraging people with ME to share a photo of the view from their bed or sofa, to show the reality of being confined to your home. 

It can be any part of your view that you’re happy to share. That might be the patch of wall or pile of emergency supplies that you stare at every day, or the view from your window that is your insight into the outside world. Use the hashtags #CanYouSeeMENow and #MillionsMissing so we can all see each other’s posts, and it would be great if you could tag #MEAction Scotland and #MEAction UK if you can fit it in!

Optionally, you can share a bit about your life with ME if you’re comfortable to, and it would also be very helpful if you could share where in the country your photo was taken. It’s particularly useful to know if you’re in Scotland, England or Wales, and what constituency or health/integrated care board you’re in. We hope to build up photos from right across the UK so that we can demonstrate the scale of the issue. 

Here are some examples to help inspire you.

The spaces people with ME are missing from

For people who don’t know people with ME or understand the condition, they may never have considered the grief and loss that comes with it, and the impact of this loss on families, friends and the wider community. 

We’re encouraging people to get creative to portray the empty space in places where people with ME should be. 

You could do this by sharing a photo of an object that should be being used by a person with ME. For example, an empty office chair where your colleague should be, an empty desk in a classroom where your friend or child should be, or an unused dance or PE kit that should be getting worn out. 

There might not be an obvious object, which is fine too. If it’s a certain place or event you want to portray someone missing from, you could try placing a piece of paper in the shot with some writing, a photo or a picture to show that someone is missing. We’ve also created some templates you can copy or print out. Alternatively, you could just take a photo of a location, like someone’s favourite wood they can no longer walk in.