New official #MillionsMissing campaign video 2018

The new #MillionsMissing campaign video 2018 was published today.

https://twitter.com/user/status/993374966774038528

 

In uk I'm lost as to if it's been promoted. I think I've found the right Facebook page now for it but have hardly seen it mentioned let alone promoted on the MEA & AFME pages I mainly frequent. There's not been much discussion on here either. I can't see discussion on Facebook just the odd post by each city organisers so I sssume there's some central forum or network I've missed as I'm not on much social media but I'm guessing many others have missed it too. There's talk that Jeremy hunt is being asked to establish funds, then on the #MM page in uk someone asks if there's a corresponding petition.... is there a central group conordinating uk protests or is it up to each separate city what they do and ask for? Can we have a millions missing protests movement without lots of people attending each city to show numbers and if there isn't promotion how do people hear? Have the main charities promoted it in the magazines? I'm not a member. I sent shoes in the past. I'm bedridden and can't attend but many aren't.

 

It’s very hard to watch...

 

Hi @Cinders66, the UK is the country with the most #MillionsMissing protests worldwide, 39 are registered so far (if I counted correctly). There are Facebook and Twitter channels from MillionMissing UK: https://www.facebook.com/MillionsMissingUK/ and also from the different cities. You can find a worldwide overview here: https://millionsmissing.meaction.net/

There are also private and virtual events and everybody can join in on social media. You can e.g. use/and check the hashtags #millionsmissing and #canyouseeMEnow on the 12th.

 

The big question is (certainly here in the UK) will any major media outlet mention it?

Does anyone know if anything is being done by any group to try and get media coverage?

The fact that the one in London is outside the BBC broadcasting house is hopeful............we'll see if they cover it (has anyone told/warned them that this is happening on their doorstep?)

 

First: 100 cities.

100 cities.

100.

It started as twelve.

Watching the cities flash past at the end is an emotional experience if you watched the twelve flash past far more slowly the first time around, the 24 the second time around... <3 <3 <3

 

#MEAction generally tries incredibly hard to get this out there. Asking them now if / what they need, will post here when I get an answer.

[Edit: @Sly Saint here ya go:

https://drive.google.com/drive/folders/1fH9WNCCn3KfBb0R-_NkOOlNJBaWy9ATc

Take a look at what's here, everyone! To some degree, the success of the protest will be in how often and how well it is covered. If you are up to it and live in the vicinity of any of the local protests, please consider paging through these docs and seeing if you can help engage your local press. Thank you so much to anyone who can!]

-J

 

The generic MEAction press release was reworked by a London PR agency and is available in the MEAction Tools section. Many of the organisers have sent out this press release to the local media. We've not had any bites in Southampton/ Hampshire though, despite chasing.

A national press release based on the same has just gone out via Pressat with details of some of the cities; London, Bristol, Southampton, Manchester and Edinburgh, together with some personal stories for each region and contacts for interviews.

eta The new PR guy at the ME Association is helping to spread the word for #MM too.

 

I think that the people who have organised the last few #MM London events were not well enough to do it this year, so the planning was maybe a bit delayed while new people got on board.

 

That just affects London though. Manchester was extremely quick off the ground.

A few of the organisers from various cities are in contact with each other, sharing ideas and stories etc. MEAction also has a space where the volunteers are discussing this. So plenty going on behind the scenes. From a 'public' perspective, each one is promoting its own city though.

 

As if by magic, I've been asked to speak on BBC Radio Solent on Thursday morning. I'll be talking about ME, #MM in Southampton and what we want to get from it. I'll be on at 7am. I was on it before and they had a huge response from the public then so hopefully I'll get the same on Thursday.

 

In uk it would benefit from widestream networking at least if not central direction. For some type of unified activity and demands. If the main people at uks ME action can't operate due to ill health have they tried recruiting others or could the USA side, which seems so well organised, step in another year?

I think it sucks that at a time when more cities then ever are taking part across uk the main charities on Facebook at least have been virtually silent on it, Not promotional and certainly not rallying their combined 13 000 members with all their friends and family to attend. How much the message has gotten out there who knows but the charities are not alongside patients with this movement and not supporting it to be the powerful thing it could be sadly . The charities also have the direct press contacts, pals in the press who they can connect with in a way a press release sent doesn't. Either ##MM Aims are not theirs or direct movement is distasteful. OMF are sending their people to 3 different cities, solve MEcfs are attending. .

If we don't make national press in uk but the cities can get themselves in the local press it would atleaset make people aware for another year, but that's another year gone. Let's hope there is something achieved from this years rather than this being something when we roll out shoes year after year like a gay pride event. Maybe focusing on local issues and services is best or is there an agreed national campaign? Like Jen brea I'm more for ME action than Simply ME awareness

 

Hi. @Cinders66 First off, there is a huge amount of coordination going. Our email list is 36,000 people and is about 1/2 UK. Subscribing is a good place to start: http://meaction.net/subscribe

You should also follow #MEAction on FB (follow both the main and the UK pages):
http://fb.com/meactnet
https://www.facebook.com/MEActNetUK/

And join any of the FB groups relevant to you:
https://www.meaction.net/groups/
https://www.facebook.com/groups/1685821885001850/
https://www.facebook.com/groups/millionsmissing

That should keep you well in the loop!

And for folks on Twitter:
http://twitter.com/meactnet
https://twitter.com/meactnetuk

#MEAction is the organization coordinating these efforts globally (all the love, sweat and hard work happening locally!)

We do have a much more coordinated effort in the US in terms of a platform (which we are publishing tomorrow) thanks to the staff support we have here. It's very hard for patients to take on the effort of organizing local events *and* do that level of national coordination (although much has happened). It's my goal to raise the funds to hire one full-time, London-based staff person to support not just #MillionsMissing but the local advocacy and organizing work people will keep doing throughout the year, as well as medical education & outreach. I know it will happen eventually. Baby steps!

xo

 

Also I think it's important to understand that the #1 goal with this is not press coverage. Press coverage would be *wonderful* but there are easier ways to get it. The power is in the local organizing, in sharing our stories and connecting to one another and bringing more and more people in every year. More cities, more attendees at each event, more able-bodied allies, and I hope (I wanted this this year but didn't have the capacity) doctors, nurses, and allies in disability rights, for example, also attending. #MillionsMissing is just a very visible example of the kind of organizing we should be doing in our local communities throughout the year.

I talked to my mom yesterday and she is hard at work in my hometown of Orlando, Florida! She lit up Lake Eola blue, she got the Mayor to pass a proclamation, she is reaching out to all the TV networks to come out and cover the #MillionsMissing event. She may not get coverage, but she now has many new local politicians and journalists who have been introduced to something they didn't know about before *because of the outreach* and even people who said "no" told her that they could do something for her next year. Now, she's going to start attending when her congressperson does coffees and the like when they come back to the home district. And now, because all of the people who planned the Orlando event, there is a local support network for new and old patients that was never there before. We also hope they can start doing outreach to local hospitals, clinics and universities (and we are building a toolkit to help people do all this). And then maybe next year, some of the doctors will come out. That is BUILDING POWER. Which is way more important than press. Press, frequently, is an outcome of power, as is legislation. The thing we want is a reflection of what we already have, not the means to get it. (If that makes sense!) Just keep doing the work brick, by brick, by brick. Celebrate the small wins. Eventually, there will be an avalanche. It will look like overnight success. Only we will know it was years/decades in the making.

And we need to do this because incremental change is not enough. We need an overwhelming, historic victory to close the gap of the last 30 years in 10. We will do it. I know it because we can already see it happening. Did you see the Australian parliament pass a resolution? Did you see the Newsbeat documentary? Did you see the screenings in the Scottish parliament and the Irish Assembly and the Finnish parliament and on and on.

Anyway, more on all of this after Saturday!

xoxo

 

I like your enthusiasm, @JenB. Although reality has proven itself again and again, you give some hope. Thank you.

 

@Jen

Many thanks for your reply Jen. The me action uk Facebook page hasn't updated since October 2017 which is why I got so confused as #MM approached. Thanks for the links. I'm pleased to hear you have been getting wide reach through your subscriptions in th uk, I still think we are being thwarted if other channels don't Channel the news but you seem to be increasing your reach. I posted on a few Facebook groups yesterday a post notifying people of the many more uk cities involved this year, that is good news. I personally, having been impacted decades, now look each year to be the turning point and in uk we have so far to go on every level, the USA has turned around a lot recently , uk is still part locked into to old ways. One problem seen this week is as our people tell the media there's no funding for research, the department of health statement to the BBC is saying we've had £3.35m, but I'm pretty sure that's mainly behavioural research, nothing like your nih is doing but it undermines the truth getting out.

I saw the things you mention and it's heartening sure but the establishments time frame I see for change here is still unacceptable to me. I think having proper London post for ACTION will make a big difference here and Ive long admired how organised and effective Me action and MM has been in the USA. I'd personally support that financially and am sure many would help finance proper advocacy s...campaign... PR staff as that's lacking from the support charities here who aren't joining in MM enough imo.

I'm a bit confused about the press as I thought them helping us apply pressure and get our voices heard was the whole point of MM and networking and joining forces the way to be heard as part of that. I saw Gary burgess has been trying to get media interest here. Inspiring sufferers to join and fight and believe has been a great achievement of your work. Thanks for all your amazing efforts.

 

I'm actually pretty sure there will be some national TV & radio coverage of the London protest Saturday. I do think there are some bites but we can't know 100% until it happens. But we've been very clear on all the organizing calls that success /= press coverage. But rather participation, organizing, and direct outreach.

My experience after getting an insane amount of press this fall (see pg 26: http://impact.unrest.film/UNREST_2017.pdf or https://www.unrest.film/selected-press – it's almost every major US and UK outlet possible and in total we had 200+ press hits) is that it gives you wide but weak impact. It's absolutely important, but the real change comes through relationship building with key people. The press just makes it more likely that someone you approach is already familiar and is going to support rather than misunderstand or hinder. And it helps to shape the narrative out there in the ether. And it helps the right people to find you. But that alone doesn't drive people to take action.

The other thing that's great is I've been doing a mad amount of press outreach. Yes, it would be nice to have a publicist, but it's extremely expensive to try to cover so many different cities. But it's forced us to develop a robust press list and for all the no replies and nos, we at least have educated hundreds of journalists a bit more on the disease, such that when there is a new opportunity (say, the government does something or there is a new research study) perhaps they are more likely to cover it with more context. With that database, we can also, moving forward, promote stories besides activism when the opportunity arises.

I guess what I am trying to say, is that the infrastructure we build (of humans, relationships, databases) is what is going to see us through and that is gold.

Yes and sorry re: the MEAction UK FB page. We have a USA page as well and neither is every updated at present. We've been channelling everything through the main FB page. I do hope we can get volunteers to man the US + UK pages in the coming months. It's also very worthwhile to follow the conversation here: https://twitter.com/search?src=typd&q=millionsmissing

There's been about 20 unprecedented thing happening in the last 36 hours so yes, I am very enthusiastic! We have a long way to go, but things are starting to snowball. It's palpable. And yes the timeline is totally unacceptable, but let's keep fighting to make this all happen much, much faster!

And for folks not subscribed/following here is how to participate on Saturday from home: https://www.meaction.net/virtual-protest

 

Aside from the fact we have been so very busy getting the message out in national and local press, on BBC TV and BBC Radio, on ITV etc. etc. We never had anyone from MissingMillions get in touch with us asking that we promote their demonstration on our social media platforms.

If you've seen any of our Facebook and Twitter posts you'll see we're pretty good at carrying initiatives that we support, but we do rely on others getting us drafts, or promotional posters etc. in the first place. We have also worked closely with Jen Brea and her team promoting Unrest - I'd argue we've been more supportive than any other UK charity - and have promoted any Unrest event we are informed about.

There are a couple MissingMillions events on our ME Awareness Week Events Guide, and several ME Association trustees are attending demonstrations in Edinburgh and London, but we just don't have time, especially now, to go chasing around for information.

So, if you want something promoted across our networks, then I suggest you send a draft (including photos etc.) to me first - or contact me via @meassociation on Facebook or Twitter. I think all the issues we are promoting are shared by #missingmillions and #MEAction so it's not like we are at odds with one another.

In fact we've been working closely on the preparation for the (intended) parliamentary debate - the EDM for which was launched the other day. If #MissingMillions appears in any press then I will try and post it on our media - like I have the BristolCable interview from yesterday.

In the build up to MEAW and in recent days, we have all been working flat out. Dr Shepherd is in Northern Ireland now, helping promote Unrest (again). If the media do carry any of the demonstrations tomorrow, then I will report them.

 

John at the MEA has been helping many of us with PR. Tbh I expected that would have included promoting it on your social media platform. So, I'm sorry if that information hasn't been passed onto you. Is Southampton one of the ones you have? I'll email you separately about that.

My experience and perception is that the focus on #MM generally in the UK has been very London-centric. "National" technically means UK-wide, not London, but maybe that's just regional sour grapes.