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

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.

 

That's great, because lugging a load of shoes about is beyond most PWME, I'd imagine.

 

Apologies re my former apology for not being able to attend seems to have ended up in the middle of the message! Oh dear - modern technology fail again.

 

No worries @Agapanthus
I've just remembered @FreeSarah lives down here too - so sorry I forgot you

 

No, you're right from what I recall hearing. I think larger animals seem to ingest them as they feed don't they, and end up with their works clogged up?

 

@Liv aka Mrs Sowester, so touched by your choir, and all the details down to blue robes and (we hope) bluebells in blossom.
Brought a tear to my eye, and I do hope we get to watch a livestream.

 

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!

 

It's okay. Don't mind me. Nobody minds me. Sniff.

xx

 

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.. .

 

Wonder what happened to all the beds used in the Olympic Opening ceremony?

 

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.

 

Sadly all the props used in events such as the Olympics get thrown in skips or snaffled by the staff in the rush to get out after the event.
Mr S has worked at such events for years, his woodshed is full of things that the everyday folks leave behind, I married a Womble.

 

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)

 

Just listened to the second international #MillionsMissing Call and that's exactly what the #MEAction team said. 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.

 

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!

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:

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).

 

ETA: The new official #MillionsMissing video will be published tomorrow.

 

I just learned that, in the United States, May is both ME Awareness Month and Mental Health Awareness Month. Doubling the irony, the 2018 Mental Health Awareness Month theme is physical fitness.

https://www.mentalhealthamerica.net/may