May 12th/ME Awareness Month - suggest how S4ME might get involved.

Andy said:
There will be protests but I'm not sure if they are doing it in the UK. Just checked http://millionsmissing.meaction.net/ and they are yet to announce the venues for 2018 protests. MEAction Network UK on Facebook last posted something 2nd October last year, hopefully they are just missing a social media volunteer, otherwise it might not be looking too good.
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I think that they comprise a group of people who are pretty ill! Goes with the territory I guess.

@Joh's post gives a good range of ideas from the US, and bunting sounds good. I also think that laminated pages pegged to a line are effective. It's a page with a person's picture and name and a summary of their story or what they want to emphasise.
Shoes are bulky to transport and last year they were delayed in heavy traffic on their way to the Dept of Health. I was also delayed by Southern Railways, though that was less important.

I'm glad I got some mad bright red and blue (separate packs) hair extensions, from a shop in London recently when visiting friends. Maybe Blue for the IiME conference, instead of my Marge Simpson blue wig and red for #Millions Missing.
 
Liv aka Mrs Sowester said:
Thank you @Andy :)
I'll keep my fingers crossed the stars align correctly @Binkie4, it would be wonderful to meet you in person.
@Jan @MeSci @Agapanthus hope you'll be able to make it. Please tag anyone else who might be interested.
I am sorry @Liv aka Mrs Sowester but I will be away on May 12th visiting my mother in Sussex (it's her 96th birthday today but so glad I didn't try to go this week to visit as would have got stuck in the snow). To be honest with only public transport, I would have struggle to get up to the place you are singing, but I hope it goes well for the choir! It sounds to be a beautiful place.

Last year the bluebells were in flower on May 12th and I'm really hoping they'll be blue for us again this year, it would be perfect.

The choir is ditching the black uniform and going blue for us too. http://www.intunechoir.co.uk/ I'm hoping there will be a large turn out, there's 150 members, but between 45-100 usually sign-up for gigs. As this one is on a Saturday it should be convenient, especially as members can bring family along.

I'm going to check out Wheal Martyn within the next fortnight, but it looks to have lots of interesting in and outdoor activities, Mr S is looking forward to seeing the waterwheel.
The atrium has a glass roof so it should be lit naturally - no nasty lighting, yay! The atrium opens into the café so the audience can sit in either space.
I'm very excited already!
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MEMarge said:
I'm glad I got some mad bright red and blue (separate packs) hair extensions, from a shop in London recently when visiting friends. Maybe Blue for the IiME conference, instead of my Marge Simpson blue wig and red for #Millions Missing.
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I love your suggestions!!! For the protest, I want to purchase red hair extensions and red glitter to compliment the red MillionsMissing Tee.

I wish I could personally attend more than one protest. There are so many fun and creative ideas and it would be awesome to partipate in each one!
 
T shirt bunting sounds good.
I may just be getting old but i think it has be be both " in your face" and a bit more controversial.

Projecting images/ words onto buildings has been used very effectively in advertising and could be effective if the correct quotes/ images are used. There has been some good coverage this year, and also sadly suicides with very eloquent insights into the nature of the condition at the severe end. Numerous facets could be covered and specific buildings covered. We should be provoking outrage as well as understanding.

I really loved the protest ( think it was in portugal) re disability issues when they parked wheelchairs in normal parking spaces as a take on how often disabled spaces are misused. Very effective.
Sadly i don' t know of any spare kings fund beds.. .
 
Amw66 said:
I may just be getting old but i think it has be be both " in your face" and a bit more controversial.
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I was thinking this. For over a week now I've been thinking about a public bed protest. Nothing concrete, just that beds take up a lot more public space. Better still if they block traffic slow convoy style. It's also how I can see myself actually managing to be at a demonstration with minimum harm, and I would love to be at one this year.
 
Is there anything that those of us who cannot attend any of the organised events could do online?

I imagine all those on twitter and FB will be posting stuff (eg #MillionsMissing poster) but I think like last year where in UK there was a 'Bin PACE' component that some kind of similar 'protest' element rather than just 'awareness' would be good.

What about a combined Get rid of GET retract PACE message/poster that could be tweeted/FB (with maybe the link to the petition which is doing miserably)
and emailed to as many of the BPS gang and their supporters?

(haven't thought this through just trying to get some ideas going)
 
Sly Saint said:
some kind of similar 'protest' element rather than just 'awareness' would be good.
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Just listened to the second international #MillionsMissing Call and that's exactly what the #MEAction team said. :thumbup: This year is not (only) about awareness and education but about action – demanding and taking action. This is why the events are named "visibility actions", and e.g. Francis Collins is supposed to be made uncomfortable (as you can see on the posters in the tools section, some countries have edited them for their purposes).

Part of the plan is definitely to storm Social Media on the 12th. The #MEAction team stretched how important it is and that no one is required to organize a big event and everybody can also participate from bed. It's important not to forget to use the hashtag #millionsmissing.

Some great tools can be found here: https://millionsmissing.meaction.net/tools/
I'm totally blown away at how perfectly organized everything is, we use the fact sheet and brochures with a German translation. In the call on Tuesday was said that more than 200 visibility actions are registered and the list is growing daily. :hug:
 
you can download and print ME awareness leaflet for general public (larger print, bold and boxes) and the excellent comic strip showing effects of PEM from

www.mechat.co.uk/db/tips.htm

I give them to all callers and ask everyone to put in libraries, church, work noticeboards, waiting rooms - wherever they can. Handy to have at events as people don't usually need to put their specs on to read, so can see at a glance.
 
What @Joh said! :D

I really like the emphasis on a specific "ask" or demand for concrete action being included in these #MillionsMissing events or demonstrations. Here's an excerpt from the ME Action "getting started" webpage:
The overall goals for our day of action are:
  • To Be Seen: We will make ourselves visible and share our stories in order to grow our movement.
  • To Build Community: We will organize patients, caregivers, allies, doctors, scientists, and elected officials in order to build power.
  • To Demand Concrete Action: We will select clear targets in each of our countries and demand specific, concrete action to create the greatest possible, unified outcry for change.
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Obviously any demands need to be tailored to the specific country/region.

In the USA a lot of the demands are directed at the NIH and Dr. Collins (eg, the petition to increase NIH research funding to $250 million). But demand(s) could also be sent to some local or national government official(s).
 
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