Join the UK and Scotland’s digital campaign this #MillionsMissing

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.

A mockup of a Twitter post with a photo of a window in someone’s home. Outside is blue sky and the tops of some buildings can be seen. The text says ‘This is my view from my bed in the Lothians in Scotland. It’s not bad, but it doesn’t compare to being part of the outside world. Lying in bed for months on end, this piece of sky has been the closest I can get. #CanYouSeeMENow #MillionsMissing
A mockup of a Facebook post with a photo of a bedroom from the perspective of someone lying in bed. On the duvet is a pair of headphones and an eye mask. The text says ‘This is my world most days, in my bedroom in Birmingham in England. I’ve been sick for 8 years. The doors on the left are a built in wardrobe, filled with clothes for a life I’m not well enough to live. #CanYouSeeMENow #MillionsMissing

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.

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 the person and what they’re missing if you’re comfortable with that (and the person with ME is happy for you to, if you’re posting on their behalf). It would also be 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.

Here are some examples to help inspire you.

We understand that this activity might only be accessible to people with mild ME and healthy allies, but we hope that the other activity to share your view with ME will allow people who are more severely affected to get involved too.

Thank you for your support and we’re looking forward to seeing your posts.

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4 thoughts on “<strong>Join the UK and Scotland’s digital campaign this #MillionsMissing</strong>”

  1. Just a reminder to make sure your view can’t identify where you live too specifically, especially with adding the region. It’s best to be careful.

  2. Can’t go anywhere, can’t afford heating or taxi somewhere, alone and no family, misunderstood, left to feel more ill with no support to get better…

  3. Can people send images for ME Action to post on their behalf? This would be useful if people are experiencing a lack of understanding and prejudice and don’t feel comfortable or safe posting.

  4. Never talk to people about ME/CFS, all I get is that look and hour or there problems, they don’t see me in my days on end in bed riddled with fatigue and pain , just days I can struggle to get about a bit ,

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