#MillionsMissing today, 12 May - post news, tweets, etc. here

My pleasure! There was (I'm happy to say) such a storm of tweets that I think it would have been quite daunting for anyone to come in late and try to see what was what, but by looking periodically I was able to fish out a good selection of the most striking and informative, I think.

What really struck me was that it's all about the pictures. With such a volume of stuff, I didn't bother even trying to read text-only. If I were on Twitter and wanting to get a message out next year, I'd do something that I could photograph.

 

Don't know how I missed this one! Top marks for visual impact. And, when you read the message, emotional impact.

https://twitter.com/user/status/995540969876373505

 

@JaimeS, @JenB - is the text of Jen's speech available, for those who struggle to listen to audio (or, in my case, remember what was said)?

I remember it was great stuff but it would be great to be able to read it too.

 

https://twitter.com/user/status/995408917747453953

 

I've been focussing on sharing stuff on our Facebook page, in particular video/livestream stuff, with the odd occasional news item/blog post. There has been so much of all of that, I've joked with a friend that I have Facebook Post Sharing Fatigue.

 

Great - I'll go and have a look.

 

Here's the link, folks: https://www.facebook.com/sci4me/

 

It's a bit hard to see much on FB if you're not registered (like me!) but here's a nice little clip from Berlin. It includes a couple of interviews in English, about 40 seconds in, one of which is with a guy from the Norwegian company that makes those robots that enable kids to be 'present' in the schoolroom. He's carrying one of the robots with him, linked to a kid with ME who is at home (hi, kid!).

 

Got to say, there's something very powerful seeing all these pix of people spark-out in their beds, all being made visible yesterday:

https://twitter.com/user/status/995389510564298752

 

The Edinburgh event was brilliant, prime location and sun was shining. I only got there for last 20 mins and luckily saw MP Carol Monaghan's speech. Was happy to be able to shake her hand and give her a wee hug afterwards, I told her that she will never know the enormity of what she is doing with her challenging of PACE and highlighting of urgent need for biomedical research.

https://twitter.com/user/status/995349435474464768

 

ITV report (about #MM in Wales):
"Campaigners call for more treatment for those living with ME
Campaigners are calling for more treatment and research for those living with ME.

Many sufferers are under the age of 40, bed bound, weak, suffer with extreme tiredness, constant pain and are over sensitive to light and sound

Its thought that around 13,000 people in Wales have the condition.

The campaign group Millions Missing took to the streets of Cardiff as well as 16 other cities across the world to demand change for people with Myalgic Encephalomyelitis (ME).

They say they want more spent on treatment and research.

Campaigners in Cardiff laid out shoes to represent sufferers who couldn't be there."

rest of piece here:
http://www.itv.com/news/wales/2018-...-for-more-treatment-for-those-living-with-me/

 

another ITV report from Manchester:
"Hundreds of empty shoes laid out in Manchester to remember sufferers of ME
Hundreds of 'empty shoes' have been laid out in Manchester to remember people who suffer from ME.

The shoes symbolise the footwear of people diagnosed with the condition who are so debilitated they can no longer use them.

ME, or Myalgic Encephalomyelitis, affects a quarter of a million people across the UK."

http://www.itv.com/news/granada/upd...ut-in-manchester-to-remember-sufferers-of-me/

 

Star and Crescent, Portsmouth:
"Star and Crescent are proud to be working with Portsmouth fundraising campaign M.E. Foggy Dog and its founder Sally Callow on a week of articles devoted to raising awareness of Myalgic Encephalomyelitis (M.E.).

In the final part of this week’s 6-part series on International M.E Awareness Day, Sally reports on campaigning to make this invisible condition visible."

http://www.starandcrescent.org.uk/2018/05/12/m-e-awareness-week-part-vi/

 

Again this mysterious "researchers'" statement:
"His thoughts on GET are not shared by all, though.

A statement to Newsbeat from some of the country's leading ME researchers and clinicians says: "These therapies help many people with CFS/ME by reducing symptoms, increasing what they can do, and improving their quality of life."
Grrrr...

 

The Stavanger Aftenbladet (Norway) reports:

Skoene til de som ikke kan være med
STAVANGER: Over 200 par sko stod helt stille på Domkirkeplassen lørdag. Eierne lå hjemme og kunne ikke være med.

Google translates:

The shoes of those who can not join

STAVANGER: Over 200 pairs of shoes stood completely at the cathedral square on Saturday. The owners were at home and could not join.

https://www.aftenbladet.no/lokalt/i/oRQ3ea/Skoene-til-de-som-ikke-kan-vare-med

 

Yippee just seen my shoes on the Durham photo

 

Me and partner rode around last night to see our local Penshaw Monument near Sunderland lit up in blue for ME...

This monument can normally be seen for miles around even when not lit up but last night we literally couldn’t find the thing because of rain and thick fog! We found it eventually...



We then rode to Newcastle to see the Tyne Bridge lit up in Blue too...



This one was quite disappointing. Barely noticeable. Must have used a whole 2 light bulbs on it lol.

 

So powerful, Jaime. So powerful. Thank you.

 

Thank you @Jaime. Strong and very moving.


Edit: the hug- I wanted to give you one when you finished speaking

 

your speech was just incredible! Thank you