27th September #MillionsMissing UK: Time to Get Involved!

[L.A. Cooper]

Hello all, and happy Monday!

As you know, Round 2 of the #MillionsMissing movement is rapidly approaching us, and now more than ever we need to band together to create change.

Despite the fact that UK protests were a great success, this time, we need more participation and a greater outreach. As well as London and Belfast, interest to coordinate a demonstration is emerging in Bristol, Cardiff, Manchester, Oxford and more. For those who are able, high attendance at protests is vital to secure media, public and parliamentary attention, to build a stronger network of individuals living with this disease, and to create change.

There are a number of ways to get involved in the movement, and so many of you have a wide variety of skills, talents and abilities. So why not connect with organisers and volunteers near you?

Please consider taking a few moments to fill in the form (link below), and discuss ways you'd like to help in your area. I'll be around to connect and help as much as I can. Best.

https://docs.google.com/forms/d/e/1FAIpQLSeo-TEevguyiQgZ5W5kJs3siAWkaCoxzysukVq-nHagydntgA/viewform

 

[Yogi]

Hi LA Cooper,

Great looking forward to the next millionsmissing.

Saw you in the video and you were superb and the London protest went very well!!

I had an idea and was wondering should the next protest be at QMUL and then the one after that at the Lancet to get attention to the PACE trial if it has still not been retracted?

Also I was just wondering if too many cities might spread the protest too thin?

Thanks for your hard work on this!!!

 

[L.A. Cooper]

@Yogi If PACE is not released prior 27th, London protest will hopefully be at QMUL, yes. However, as of yet, we can't seem to retrieve any information on the legality of demonstrating on a university campus if you are not a student or member of the student union. In this scenario, I have a letter drawn up to inquire about legal documents determining whether we can or cannot be there. If, for example, PACE is not released, and we cannot legally protest on QMUL grounds, we will hold it at Department of Health in Whitehall again, as the walkway outside QMUL is very narrow, and if we obstruct it, we run the risk of being asked to leave.

I looked into The Lancet as a possible location back in May. The issue is, it's not a good area. There's practically no foot traffic, and very little room, so it's not a possiblity which is a real shame.

Your point about too many cities spreading the movement thin is valid, and a really good question to ask. Of course, we want as many people and shoes in attendance as possible, however, every and any type of protest counts, whether that's a very public 200-person demo with speeches, leaflets and posters, or a few individuals spreading the word elsewhere and gaining attention locally. It's amazing how the general public responds, and small protests can be just as powerful!

 

[Sasha]

Also I was just wondering if too many cities might spread the protest too thin?

I think that the more cities we have, the more likely it is that the media will take this seriously and will be more likely to cover the demos in each place.

Also, if people know there's a local(ish) protest, I think they'll be much more likely to support it. I don't think it's a zero-sum game - quite the reverse! I think having local protests will allow the demo groups to tap into local networks and get them excited about joining in.

I can see this being HUGE.

Very exciting!

 

[Yogi]

@Yogi If PACE is not released prior 27th, London protest will hopefully be at QMUL, yes. However, as of yet, we can't seem to retrieve any information on the legality of demonstrating on a university campus if you are not a student or member of the student union. In this scenario, I have a letter drawn up to inquire about legal documents determining whether we can or cannot be there. If, for example, PACE is not released, and we cannot legally protest on QMUL grounds, we will hold it at Department of Health in Whitehall again, as the walkway outside QMUL is very narrow, and if we obstruct it, we run the risk of being asked to leave.

I looked into The Lancet as a possible location back in May. The issue is, it's not a good area. There's practically no foot traffic, and very little room, so it's not a possiblity which is a real shame.

Your point about too many cities spreading the movement thin is valid, and a really good question to ask. Of course, we want as many people and shoes in attendance as possible, however, every and any type of protest counts, whether that's a very public 200-person demo with speeches, leaflets and posters, or a few individuals spreading the word elsewhere and gaining attention locally. It's amazing how the general public responds, and small protests can be just as powerful!

Thanks. It is great that you had already thought of that.

Agree that part of London Wall at No 125 doesn't have much footfall and just lots of taxi's whizzing past. Further up towards Moorgate would have been better as lots of people and near the tube. I do wonder if all the Lancet staff were to be made aware of this bogus study whether they could bring pressure on to their journal as it is in their interests to preserve their magazines 'reputation'.

Good to see you scoping out possibility of QMUL though.

@Sasha - yeah I agree lots of small protests can be good to.

 

[BurnA]

I think that the more cities we have, the more likely it is that the media will take this seriously and will be more likely to cover the demos in each place.

I have the opposite view. The media judge things by the number of people present, one large crowd is worth a lot more than several small crowds. A small gathering just isn't newsworthy, multiple small gatherings are all equally unnewsworthy, and of course it's difficult for one organisation to cover multiple locations.

 

[Keela Too]

My own view is that having satellite demos around the UK could be very positive. If all are taking place on the same day, then each feeds off the strength of the others. Granted, having very small demos just a few miles from each other may be less than effective, but single demos in many major cities... all to the good.

The first #MillionsMissing demo in Belfast took place a few days after the main one on 25th May. It worked for us as we had a conference to tie it in with (and couldn't have organised 2 events in such quick succession) but it might have been better to have had it on the same day as the rest of the demos for maximum global impact.

This next one we are planning for the same day as everywhere else.

 

[BurnA]

Despite the fact that UK protests were a great success, this time, we need more participation and a greater outreach.

Hi @L.A. Cooper
I think this is a great idea and the more attention we can get the better. I was wondering if anything different will be considered this time, apart from location as mentioned already above.

Were any of the previous protests picked up by national media or are there any learnings from last protests ? Is a different approach required to maximise attention ?

For example should QMUL, KCL or Oxford Unis be specifically targeted as part of the demo ? Or are there other ways to get more attention ?

 

[Sasha]

I have the opposite view. The media judge things by the number of people present, one large crowd is worth a lot more than several small crowds. A small gathering just isn't newsworthy, multiple small gatherings are all equally unnewsworthy, and of course it's difficult for one organisation to cover multiple locations.

Hi BurnA - one large crowd may well be worth than several small crowds, but as I said, I don't think this is a zero-sum game in which there's a fixed number of people in the UK who would protest and instead of, say, 15 demonstrating in London (which is what it looked like in May), we would have three in each of five cities. I think each city is going to get its own 15 or more - and that they'll be people who couldn't possibly have travelled to London, or wouldn't have been willing to.

And I think the same is going to apply to shoes. People have seen what a success the May #MM protest was, and they'll send shoes in in larger numbers. I think we'll see hundreds of shoes in each major city that's taking part.

I think it's going to be waaaaaay bigger!

 

[BurnA]

I think each city is going to get its own 15 or more - and that they'll be people who couldn't possibly have travelled to London, or wouldn't have been willing to.

Perhaps, but we won't know. I would consider travelling to one central protest but I honestly won't consider going to the effort of travelling to one of several regional protests. I just don't think it's an effective use of my time or health. Obviously not everyone is the same as me, and if a regional protest was on my doorstep I may have a different opinion but it's not and I would have to travel either way.

And I think the same is going to apply to shoes. People have seen what a success the May #MM protest was, and they'll send shoes in in larger numbers. I think we'll see hundreds of shoes in each major city that's taking part

I hope so.

 

[Sasha]

Perhaps, but we won't know. I would consider travelling to one central protest but I honestly won't consider going to the effort of travelling to one of several regional protests. I just don't think it's an effective use of my time or health. Obviously not everyone is the same as me, and if a regional protest was on my doorstep I may have a different opinion but it's not and I would have to travel either way.

I wouldn't travel to a regional protest either - I'm not capable of travelling more than a couple of miles. But the key protests are going to be in big cities with large populations, and lots of PWME and their families and friends will be living there and (I hope) will be keen to support their city's protest.

 

[L.A. Cooper]

So, if an Oxford demo goes ahead, it will most likely be at one of the prominent university locations, but as I'm only facilitating UK in a general way and overseeing the coherence of the main message(s), specifics of local protests are up to the organisers and their volunteers to decide. I have a few people who are interested in Oxford, and I think it'd be a great location. Plus, STUDENTS! Let's get students involved!

I highly doubt protests will be popping up in every city, town and village. Every location I know of thus far is a major city, and relatively far apart. This allows people with or without ME to congregate as much as possible, and by having more than, say, just London as in May, we have more chance of getting people with all severities out. This not only helps with media, but means those who are on the lower ability spectrum have an opportunity to support and experience the communal inclusion.

As for number of people, I personally think a one person silent protest can be effective, moving and gain a lot of attention, but it depends on how individual protests are done. The more the merrier, of course, and there are plenty of ways of getting numbers up that I didn't necessarily explore in May simply because of lack of time and volunteers. Student involvement may be one such possibility, as is contacting the patient support groups in the area (ME Association have a great list on their site), local MPs as well as doctors, nurses, medical students (very important opportunity)...jump in with any more suggestions.

Great to see all the activity and opinions on this thread, by the way. Love it!

 

[Sasha]

Also worth remembering, of course, that our numbers will be small in relation to the kind of protests that others do (which attract hundreds and more) but mainly, it's the shoes who will be doing the protesting! Two people with 300 shoes is going to really get it across - which is that there are millions missing, who would have been there if they could!

@L.A. Cooper - does it make sense to encourage those organising protests to start gathering unwanted shoes from their friends/family, so that any patients who would struggle to find and mail shoes will be able to just send a message to one of the protests and be included (and boost the number of shoes)?

They'd be in addition to those of us who can send in shoes, of course (I will).

 

[L.A. Cooper]

@Sasha It would be great for all protest organisers to start gathering shoes from people we know. We can address promoting this closer to the time, but I will not be collecting any more shoes this time around as I literally have no space to put any more! I have some 300+ from May anyway, and transporting them was quite tough so want to keep it at a minimum for London!

 

[Sasha]

I've been trying to imagine what 300 shoes look like, all in a pile!

I've counted these in the picture (scroll down) and I reckon that's about 70:

http://www.dailymail.co.uk/news/art...d-new-life-Britain--giving-save-like-her.html

This is why we need healthy helpers!

 

[Sasha]

Maybe each city should have a target number, based on the location they're planning on using and how spread out they want the shoes, and how many they can cope with.

I thought the Washington ones looked good laid out, and they look to be about a couple of feet (no pun intended!) apart in each direction - and could have been spaced a bit further (three feet?) and still not look sparse.

Call it a meter, and if you've got 300 shoes you can cover 330 square meters, or a 17m x 17m area, , which is bigger than a tennis court.

It would be good to know if more demos are planned after September, so that people can think about storage.

I think it might be good to get people thinking about shoe-collection reasonably early because a lot of PWME are going to have to move pretty slowly on anything.

 

[Keela Too]

Yes @Sasha I think spread out is good. For our demo we had the shoes at the side of a hall. We had PLENTY of shoes, but I thought the photos of shoes set - 1 pair on each paving slab on the pavement - looked really much more effective. ie the distance apart they would be if folk were standing in the shoes.

Our own display lost some impact as the shoes were on tables and the floor beneath them and rather squished up. Hopefully our next demo will have much more visual impact.