Announcing #MillionsMissing 2019! Join us!

Andy

Andy

Retired committee member
We are thrilled to announce #MillionsMissing 2019!

This May, we will take to the streets – or demonstrate from our beds – to show the world we are here, we are the #MillionsMissing, we will continue to fight for our demands for people with myalgic encephalomyelitis (ME).

We’ve made important strides in making our voices heard before our government leaders across the world, but we have so much more to do. More than ever, we need to grow our movement and remain persistent in our demands for large-scale change.

Now is the time to take our fighting spirit and creativity to the streets once more. Now is the time to spark a groundswell of support from the public for ME. We must send a message to our government representatives that we are here, we are fighting for our lives, and we are not going away. We demand equitable research funding and care, accurate medical education and an end to the harm and stigma.
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https://www.meaction.net/2019/02/26/announcing-millionsmissing-2019-join-us/
 
Does anyone on the forum have experience with organizing a millions missing event?

I'm sort of wondering what happens during the actual event and how long it lasts. It seems like in most cases speeches are being given and patients and carers share experiences through an amplified sound installation?
 
Michiel Tack said:
Does anyone on the forum have experience with organizing a millions missing event?

I'm sort of wondering what happens during the actual event and how long it lasts. It seems like in most cases speeches are being given and patients and carers share experiences through an amplified sound installation?
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The one Millions Missing Canada had last year in downtown Toronto was on one of the busiest corners.

We considered that we had 2 audiences: passerby and live stream viewers via Facebook.

For the former we had postcard size info to pass out, some folks stopped to chat - and we had shoes of the missing and posters (eg "We'd be marching in protest but we're too sick") on display, and people brought their own too.

For Facebook Live, we chatted with the people attending the event - why attending, their experience with ME, with health care, message for Prime Minister.
 
Michiel Tack said:
Does anyone on the forum have experience with organizing a millions missing event?

I'm sort of wondering what happens during the actual event and how long it lasts. It seems like in most cases speeches are being given and patients and carers share experiences through an amplified sound installation?
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Thanks for tagging me @MEMarge :)

Yes I do, along with my mum. I was unable to attend in person last year but did a lot of the prep, and then social media stuff on the day itself from my bed.

In Sheffield we decided to make it basically a whole day event, with a focal point during the middle of the the day when more people were having their lunch break. I think volunteers started set up at about 8/9am laying out the shoes, then posters and a "washing line" with people's stories pegged all along it. We'd also hired a gazebo that a company came and put up, with table that we laid out information leaflets on. This meant that for a lot of the day our demonstration was more of an exhibition than a loud protest.

We asked for volunteers from the local area who might want to speak, and a few came forward. We asked them to write up their speeches in advance, so that a group of us could give them a glance over first, and to be more sure they'd stick to our time limits, tho we weren't at all strict about this.

We had a portable sound system from some friends. And had advertised the speeches to be starting at 1pm (I think, might have been 12:30pm, can't remember!). This was when most people turned up, and also when there were more people leaving their workplaces to grab lunch. My mum introduced the event, and then handed over the microphone to the 3 other speakers. After they spoke we played a song, called Can you hear me?, that a severely ill woman with ME had emailed us just a few days before the event. All of this bit probably took about 30-40mins. So not hugely long. This was the bit we livestreamed.
After that a local folk band had offered to play so did a short set (30mins maybe), whilst people chatted and milled around reading the messages of shoes and stories on the washing line.

The crowd then slowly dispersed and a few volunteers stayed for the rest of the afternoon handing out leaflets and talking to people, as afternoon passersby read the messages and stories laid out. They packed up at the end of the day about 6pm.

This was just Sheffield though! Other events will have been quite different, some bigger, some smaller.

I like the idea of an info sharing and practical tips thread! Feel free to tag me anytime if I might be able to answer questions. I'm also kinda thinking it might be good to do an FAQs type article, and give people an opportunity to send in questions that I could then get various organisers to give their perspective on... Will talk to others at #MEAction UK about this and try to work something out!
 
I mentioned this on another thread; Mental Health Awareness Week is the same week as ME awareness week.

Mental Health Awareness Week. Hosted by the Mental Health Foundation, Mental Health Awareness Week 2019 will take place from Monday 13 to Sunday 19 May 2019. The theme for 2019 is Body Image – how we think and feel about our bodies.
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https://www.mentalhealth.org.uk/cam...e-events/slices/mental-health-awareness-week/

(note they call it the blue light programme).

Although world Mental Health day is in October, apparently Mental Health Week has always been in May (since 1949 in the US according to Wikipedia), so it wasn't actually a 'new thing' last year (contrary to what I and others said).

What can we do to make #MM more visible in the media and not be engulfed by the Mental Health awareness campaign?
(I think we might already be seeing this judging by the latest BBC Comic Relief report).
 
#MillionsMissing week is actually the one before then. So from 5th May and culminating on 12th. Which should make it being totally engulfed by mental health week somewhat less likely.

I imagine most visibility actions will happen on the 12th, but it's mother's day in the US and a few other countries on the 12th, so wouldn't be surprised to see actions more spread out across the week.

Rather unfortunate mental health week is called blue light programme considering the MEAssoc's Go Blue for ME thing, especially as they've tried to get buildings lit blue.
 
Michiel Tack said:
Does anyone on the forum have experience with organizing a millions missing event?

I'm sort of wondering what happens during the actual event and how long it lasts. It seems like in most cases speeches are being given and patients and carers share experiences through an amplified sound installation?
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We're still in the planning stage for this year's in Southampton, but I can share what we did last year.

Ours lasted 3 hours 12-3pm. We deliberately chose somewhere with an impressive backdrop for photos and arranged everything in the middle of the big square so this was in the background for photos. It worked so well that we're doing it there again this year. It also had really good foot fall, which was a bonus.

We collected shoes beforehand by asking for donations on local boards on FB etc and collected tags by asking pwme. In the morning we had around 400 pairs. As people came along, they brought shoes with them and this grew to over 500 pairs. We had planned how to lay them out and getting the spacing right, so people could walk among them. Two of us laid out the shoes and then other volunteers just took a bunch of tags and attached them to the shoes according to the age/ gender. Some people did send shoes and tags too.

We had a gazebo as an info stand with stories hung up around it on string and a table. We didn't have any speeches as we didn't have the budget for a sound system. We deliberately kept it low key so the public felt able to come over and ask questions, look at the shoes etc. Many of the pwme & their families who came along on the day took leaflets and spoke to the public about the aims of the campaign, lack of funding etc. Others just wanted to meet and talk to other pwme and were thrilled with the social aspect of the event.

In terms of recording numbers, we said to only give leaflets to those who'd been spoken to and had shown an interest. 300 or so were given out. But we'd tried to count how many attendees were there and that didn't work so well. We estimated 80 or so. So need a better system for that this year. Maybe a registration process would work.

We organised that with just 2 of us, but had other people helping with collecting shoes, making tags and of course helping out on the day with setting up and packing away. Hoping to have a bigger team this year to do more of the admin and maybe bring some new ideas.

I hope that was helpful. It was quite different to Sheffield in many ways and this shows, I think, that you can make it anything you want. The key, imo, is to think about what the photos will look like as they last longer than the event.
 
Michiel Tack said:
Thanks @Gecko and @chicaguapa for organizing these events and sharing info. It's very useful information.

Just one question: how do you collect that many (400 pairs!) shoes? Do you ask patients with ME/CFS to send them to you or do you collect them in another way?
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We asked around for donations of shoes from just about anyone, asked on local FB pages, one charity shop gave us loads of shoes and we gave back a similar amount afterwards. The rest were donated to a homeless charity and a refugee centre. We matched them up on the day with the tags which we'd collected from pwme. If the pwme had a special request re shoes, eg trainers because they used to do a lot of sport, I'd make a note on the back of the tag and made sure we put it on a pair of trainers.

Some people did send shoes though, which of course was fine. But it's cheaper and easier for them to email the text which we then made into a tag for them.
 
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