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#MEAction and Millions Missing UK

AndyPR

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#MEAction are expanding and now have a separate UK Facebook page - www.facebook.com/MEActNetUK/ - soon, just like the Hell's Angels, there will be chapters everywhere.... ;)

They are looking for volunteers to run Millions Missing protests in UK locations on Tuesday 27th September outside of London - link (https://www.facebook.com/MEActNetUK/posts/1629296337388323:0) to the relevant Facebook post;
The next (globally coordinated) ‪#‎millionsmissing‬ protests are on Tue 27th September. Can you help organise a protest in your city? A protest in London is happening, but we welcome your thoughts on where. If you are in or near London and can help in any way, please tell us.

We need volunteers. Can you help organise a protest in Newcastle, Manchester, Bristol, Oxford, Cambridge or Birmingham? MEAction Network UK is here to help organisers with support, ideas, planning, and providing access to t-shirt, banners, etc.

http://goo.gl/gnt4fZ
Link in quote is to http://millionsmissing.meaction.net/

@JaimeS hopefully this post is helpful, if not we can ask one of the mods to delete it.
 

AndyPR

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Post from another thread.

LA Cooper is already making great strides helping coordinate the next UK MillionsMissing protests (plural) and I'm helping out a bit, but we desperately need more volunteers. Can you organise an event (of any size) at a key location near you? Oxford, Bristol, Cambridge, Belfast, Edinburgh, Cardiff, Birmingham, Newcastle, Manchester? Can you help with any of the following: writing press releases, transporting shoes/banners, writing copy for the protest handouts, creating banner/poster slogans, organising printing of t-shirts and shipping to the protest locations, identifying and considering, protest locations, ascertaining the law/rules about protests at the specific locations, writing to MPs before/after the event, posting/tweeting live during the protest (to disseminate photos from the event), refining our key messages, encouraging healthy allies to attend, asking celebs to share our messages/photos, manning social media accounts, taking/editing event photos/video, finding and asking notable folk to speak at the protests, etc etc. The goals of the protests are to embarrass and apply pressure to those letting patients down and to get our message across through the press (that we are far sicker than people realise, and the research funding is utterly inadequate).

Obviously patients can't do much individually, but if we each take on a little piece it all adds up quickly, and there's lots that can be done remotely, without attending the actual protest. I didn't make the May protest in London but did help from home, and family went to the protest on my behalf.

I've been sick for seventeen years and I'm not prepared to tolerate this indefensible state of affairs where we are abused and lives destroyed by careerist "researchers" who give us the finger every time they release one of their ridiculous flawed "studies". It's not science, it's funding lobbying. But to bring about change we have to figure out how to work together in the UK and abroad and make it happen, within our limitations. So the (big) challenge is to work out how we can join hands and mobilise further en-masse to effect change, and that probably means very large numbers of us taking a mouse-bite each, and bringing in healthy allies. So PLEASE consider what you can do, and offer your help.

MEAction Network UK (led by LA Cooper) is coordinating but needs a lot of help. This is not just about one protest, but about building a network of volunteers (patients and healthies), tools and resources to assertively lobby and grow stronger, so work done for this protest will be used as a foundation for the next one, and the next one, and the next one, until the politicians start to listen - each time we learn how to do it better. We also need to be ready to make use of incoming resources like some research ongoing and Jen Brea's TED talk which will help get the message out.

Please get in touch through....
https://www.facebook.com/MEActNetUK/
http://www.twitter.com/meactnetuk
 

AndyPR

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Action for ME have stated their support for the Millions Missing events at the end of this month
A global M.E.-awareness event is planned for Tuesday 27 September - and you can get involved. Building on the success of protests that took place across the world in May and June, the Millions Missing event will see demonstrations in more than 20 cities including London, Cardiff, Bristol, Oxford and Belfast.

Click below to see how you can take part from home, in person, and on social media.

We plan to attend the protest in Bristol, and will share live updates on social media on the day.
https://www.facebook.com/actionforme/posts/10154464073138209

It would be nice if all the UK charities were to do the same, or similar, notice of support, even if they weren't intending to attend any event. In particular, as a paid up member of the ME Association, I'd like to see more support from them, particularly on Facebook - they only did coverage after the event earlier this year and have refused to share more so far in order to stop the MEA Facebook page becoming "a carbon copy of one of their (MEActions) Facebook pages". o_O
 

Cinders66

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What patients demands does AFME support?
Are uk me action protests going to call for more uk MRC nihr funds like USA central demand is for nih funding, or it was last time.
 

AndyPR

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What patients demands does AFME support?
Are uk me action protests going to call for more uk MRC nihr funds like USA central demand is for nih funding, or it was last time.
MEAction UK demands here
#MillionsMissing UK Protest Demands - Survey

One of the MEAction demands is the release of the PACE data, AfME released a letter supporting this early in the year. I have seen no other indication that they explicitly support any other of the demands, though by supporting the event I would say they are implicitly supporting the MEAction demands.
 

Cinders66

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^
MEAction UK demands here
#MillionsMissing UK Protest Demands - Survey

One of the MEAction demands is the release of the PACE data, AfME released a letter supporting this early in the year. I have seen no other indication that they explicitly support any other of the demands, though by supporting the event I would say they are implicitly supporting the MEAction demands.
Who decided which demands went on that survey? Was there a reason why as someone else asked, there were just five questions peoplewere asked to respond to which rather led the direction ...

There no call for increased or RFA funding , despite that being the main call of USA protests

My concern is if AfME actually think it's fit for them to attend , it isn't necessarily going to be applying the radical pressure on areas I'm concerned with primarily which are research funding, education and provision for the severely ill
 

AndyPR

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http://www.meassociation.org.uk/201...-on-the-27th-of-this-month-11-september-2016/

#MillionsMissing – how we can become a lot more visible on the 27th of this month | 11 September 2016

The second shot in this year’s #MillionsMissing protest campaign to get ME/CFS pushed further up the political agenda will be fired in six cities round the UK on September 27. And most of the local organising teams have put out calls for more shoes to lay on the ground if you can’t get along in person.

Organisers of the UK arm of what is described as a another global day of protest aim to build on the success of the first #MillionsMissing protest which was held in May.
Also has been posted to their Facebook page, www.facebook.com/ME-Association-171411469583186/