Q&A with #MillionsMissing UK Organisers

On Thursday 18th April, #MEAction UK held a conference call with organisers of #MillionsMissing event past and present from across the UK.

There are already events planned for 2019 in all 12 UK regions, with over 25 events in the UK

Claire from Southampton, Janet from Edinburgh, Carolyn from Sheffield and Denise from London were on hand to answer questions. However the call became a bit more of a group discussion, which everyone listening to and suggesting ideas. Those present ranged from first time organisers to those with significant experience. This coming together and lifting up of other grassroots organisers across the country is exactly what #MEAction aims to facilitate, and it was great to see it working so effectively.

To share this even wider, here are the edited minutes of what was discussed.

Claire told us how in Southampton they decided to keep the event sombre and low key, held over 3 hours but without the speeches or ‘protesting’ of other events. They put significant effort into the placement of shoes, carefully allowing enough room for people to walk in between the rows. She said people had told her that walking up the long rows of shoes, with tags from many people with ME, was akin to walking up war graves.

They got a lot of footfall from passersby, and had people ready to talk to them about ME and #MEAction’s aims from the event. Handing a leaflet to each person who engaged was a useful way of counting how many members of public were interested in the event. Since they felt it was such a success, they are planning for a similar set up this year.

Carolyn described Sheffield’s 2018 event. It was quite long, from 10am-6pm with a focal point in the middle of the day including speakers and performers. They had the memorable red winged stilt walkers, a gazebo, shoes, posters, banners. By defining a focal point at 12pm they got a large number of people to turn up then, to listen to the speeches. They then played “Can You Hear ME” – an incredibly moving song written by Alexandra Faye who has severe ME. They are hoping other events across the world will use the song this year – email [email protected] if you’d like the MP3 file to use. After this they had a local folk band playing which many attendees said they really appreciated as a bit of a cooling off period after such powerful speeches and the incredibly moving song. They’re aiming for a similar set up this year, with speakers, shoes, a live performance of “Can You Hear ME” and a choir. They also put up a washing line with people’s stories hung along it that was very effective in engaging the general public. Whilst some people aren’t keen on walking up to a volunteer and asking what is going on, many were more so after reading a few people’s stories.

Janet discussed how the Edinburgh event had started as a fairly small scale action outside the Scottish parliament in 2017, but then grew in 2018, with speakers and choirs. They had people with ME standing up with a microphone and telling their story, and are planning the same this year. One of the most memorable parts of the 2018 event was the mass lie down in solidarity with people with severe ME who were unable to be there on the day. This was led by Emma Shorter, describing the effects of severe ME and naming some people with severe ME from around the world.

This year the Scottish flagship event will be in Glasgow and they’ve got Stuart Murdoch and Chris Ponting speaking, as well as people with ME telling their stories or reading poems. They’re also aiming to attract attention with two people wearing panda costumes, illustrating that there are more pandas than ME nurses in Scotland.

For Scotland, as they are less based around support groups, #MillionsMissing also became a time for a lot of attendees to meet each other in person when previous contact had often been online.

The incredibly varied nature of these events really does show that anything goes. From a small gathering with shoes and a few banners to a much larger event, each one has its impact, and together we amplify that across the globe.


Q: How do you find a venue? One town is struggling with other events going on at the same time.

A: Ask the council, or look into the possibility of using private spaces. Churches often have space around them that they own. Consider a park instead of the town centre.

Think about a non-typical event – maybe a roving protest instead of a static one. One suggestion was to take a bed on wheels to push around the town centre. This sort of thing could be shorter, say just half an hour. Take photos and get them up on social media and it will still reach a lot of people.


Q: Getting press coverage is hard, any ideas?

A: This is a difficult one, but there are different ways to hack the media. The first piece of advice is be persistent. Bug them, don’t be British about it! If they don’t respond, email again, next time phone them. If you’ve tried three times and got nothing do move on though.

Sometimes a way to get into the media is to change the angle of your story a bit, for example if you got another local organisation (such as GoodGym in the UK) to help push a bed on wheels around the city centre to raise awareness, this might be more likely to grab a journalist’s interest.

Add something personal in there. Press love a personal angle, so finding someone who’s up for having their story told by the press, and for having photos taken will be a big plus.

[maxbutton id=”10″ url=”https://drive.google.com/drive/u/0/folders/1fH9WNCCn3KfBb0R-_NkOOlNJBaWy9ATc” text=”Press Toolkit” ]


Q: My local council are asking for a £50 fee to hand out leaflets because #MEAction are not a registered charity in the UK. Any ideas how to get around this?

A: #MEAction is not yet a registered charity in the UK, but this is something we are looking into for the future. In the meantime, consider asking another local charity for their support, especially a disability related charity.

One person said they’d been told they were allowed to hand out leaflets for political purposes, but when asked to define that were told it only related to political parties so they were challenging this.

Another suggested the local Healthwatch may be able to help. Others said they hadn’t come across this problem because their events were held on private property (mainly church grounds).

One participant said they gave information by word of mouth, but also handed out crocheted flowers so that at least people were walking away with something to make them think and remember.

This year we also have our fundraising tool, to help you recoup the costs of your action, and to fund #MEAction’s work for the year ahead.

[maxbutton id=”21″ url=”https://give.meaction.net” text=”Fundraise now” ]


Q: My local council want me to have public liability insurance?

A: Yes some councils do appear to be making this a requirement. Unfortunately #MEAction is unable to get coverage for the whole of the UK at this point, but we have set up our fundraising tool so that organisers don’t have to bear the cost of this on their own. Set up a page for your city today:


Q: How do you get shoes?

A: To get a higher volumer of shoes, ask local charities, schools and organisations. Second hand shops in particular get quite a few shoes they are unable to sell on and normally just recycle these but are often very happy for you to take them instead.

You can also ask individual friends and family. However many you have, it will link up your action with those happening across the world.


Q: How did you collect stories?

A: Mostly just by email and social media, but you have to keep pressing it, and don’t be surprised if the bulk of them come in the last week. Telling local stories is powerful, but we will also have a cache of global stories that anyone can use. We want people to know that whilst ME effects hundreds of thousands in the UK, it affects millions globally, and we are coming together with actions and voices from cities worldwide. We are collecting stories globally via this form and will be releasing them for anyone to print off and display as soon as possible.

[maxbutton id=”21″ url=”https://www.meaction.net/2019/03/29/millionsmissing-tell-your-story-to-the-world/” text=”Tell your story” ]


Q: Any tips and tricks for social media on the day?

A: It is very easy to livestream an event, and those that have done in the past have got a very good response to it, with loads of people at home incredibly grateful to be able to be a part of the event.

Use your phone and Facebook Live or Twitter Live, then walk or pan around your event. Or strap the phone to a tripod for a steadier stream of speeches or interviews. Consider talking to some of the people present and asking them what it means to them to be there on that day.

Quick reminder: Always start videos and take photos in landscape/horizontal mode! They’re much better to use on social media and in advocacy over the coming year.

Use the #MillionsMissing and tag @MEActNetUK in whatever you’re doing and we’ll share as much as possible to boost your event.


Q: I’ve got posters from last year’s action with Jeremy Hunt’s face on, but he’s no longer Secretary of State for Health and Social Care. Should I reuse the posters or not?

A: Yeah, reuse them, says Claire. Carolyn jokily suggests printing and cutting out Theresa May or Matt Hancock’s face to stick over Hunt’s instead.

There are new UK #MillionsMissing posters this year, reflecting the demands from the parliamentary debate.

  • Fund biomedical research into ME
  • Stop GET & CBT for ME
  • Update medical training on ME
  • Stop unjustified child protection proceedings against families of children with ME


[maxbutton id=”10″ url=”https://drive.google.com/drive/u/0/folders/1gnwhuX7pRGtA32aCAzE7z0gmhxaDzJ11″ text=”UK posters” ]


Another idea is to have a poster making session at your event. Take along cardboard and some paint or felt tip pens. Get people to write their own slogans or use some of ours. Then take photos of them with their poster and post to social media. A similar session resulted in some great posters in New York which you can use for inspiration.

Remember though, if you’re creating new posters, don’t use the branding from two different organisations on the same poster.

And that was all!

If you have more questions, or ever need any support do get in touch with Espe, our UK coordinator, at [email protected]. We now have the ability to help you connect with people in your area, so if you want to get organising and reach other people in say Kent, or Yorkshire, we can send out an email to all the people in that area who have engaged with us before.

Anything technical to do with the fundraising, or events pages, Espe is your go-to person.

The biggest thing we’re trying to do is connect, network and grow this movement into something unstoppable. Together we are strong. Together we are loud. Together we will not be ignored.

Thinking about holding an event but not yet registered? Do so today!


[maxbutton id=”21″ url=”https://act.meaction.net/page/9008/data/1″ text=”Register an event” ]


[maxbutton id=”10″ url=”https://my.meaction.net/calendars/millionsmissing” text=”View all events” ]



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