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

Kalliope said:
Found it and it was a breeze!

Just click here and find the location of your event on the list, click on the link and upload. They want pictures from physical events, not virtual.
SmugMug City Upload Links (#MillionsMissing 2018)
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Great. If there was an official MEAction communication linking this I'd be happy to share it on the S4ME Facebook page - but just sharing a Google Docs link and saying "honestly, it is from MEAction and totally safe to click the links" is not something I'm keen on. :)
 
Andy said:
Great. If there was an official MEAction communication linking this I'd be happy to share it on the S4ME Facebook page - but just sharing a Google Docs link and saying "honestly, it is from MEAction and totally safe to click the links" is not something I'm keen on. :)
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Sorry but I did have this as a tweet and it was removed -- #MEAction may be worried someone will remove or mess with the photos, so it hasn't been shared in the wider space of the Twitterverse. I can confirm that the link provided is in fact the correct one.
 
I've seen this image, but I cannot remember where, and cannot find it again.

1526387188.jpg


It is at Hertha Berlin Football Club.

A brief machine translation

"ME/CFS: recognition and enlightenment now!"

Coincidentally, the 12 fell. May with a Bundesliga game between Hertha BSC. For us as a Group South, Berlin was so clear that we would again contribute a small sign of solidarity with the Affected and a critique of the present conditions. This year, it should be only a small Banner, but a slightly larger banner with the inscription: "ME/CFS: recognition and enlightenment now!" For this, there was the Logo of the international #MEAction Networks. What is behind the saying?

...

Those who have no voice, in the stadium and placards high, which can not hold a Talk or demonstrate, give a voice, give them. The situation is very serious. We again learn of a deceased ME patients in the last year. So it's not more!
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Translation

Original
 
Could have sworn I'd seen this posted on the forum somewhere but my search skills aren't finding it.

When people ask me what ME is, I try to remind myself that the knot in my gut isn’t their fault. No matter how well intentioned, the accompanying question: “Is that when you’re always tired?” – and knowing how far short from the reality this falls, is something I’ll never get used to.

It sometimes feels easier to admit defeat than divulge the reality. For me, ME mostly means heartache.

ME is watching my mum struggle to walk up the stairs most days, or to shuffle to the kitchen to take her painkillers. It’s hearing her mentally strain to engage in conversation; struggling to articulate words.
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https://www.independent.co.uk/voice...-syndrome-parenting-nhs-funding-a8348351.html
 
And this was published yesterday
A 21-year-old young woman from Norden who died after battling a devastating disease was just one of many represented at the Millions Missing movement in Manchester on ME Awareness Day on Saturday 12 May.

The Millions Missing movement, which falls during ME awareness week (7 – 13 May), aims to bring sufferers together by laying out a pair of empty shoes, representing the life missed due to the illness and demands change for sufferers.

Merryn Crofts was just 21-years-old when she died after a six-year battle against Myalgic Encephalomyelitis (ME), a neurological illness that causes immense and insufferable pain that affects approximately 250,000 people in the UK.
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https://www.rochdaleonline.co.uk/ne...ines/118870/me-awareness-day-millions-missing
 
The filming of the MillionsMissing event in Stavanger, Norway, now has English subtitles.
@Woolie has, once again, been of incredible help with proof reading! Thank you so much!!!

Talk by mother and carer of severe ME patient, Karin E. Wattum begins at 11 min 33 sec
Talk by prof. Ola Didrik Saugstad begins at 28 min 16 sec
Reading from blog post by ME patient Sissel Sunde begins at 47 min 11 sec

There is also a check on 100,000 NOK delivered to research into ME towards the end of the video. It was raised by a local group of women who calls themselves "mothers".

Musician: Fredrik Sele
Host: Eirin Sund
 
I just finished watching the segment with Karin's speech. I gasped out loud at the second state reporting, out of control ignorance.

Devastating, powerful, heartbreaking, brave.

The worldwide suffering of this disease is just too much, and totally unnecessary--it must stop now! Humans can do
so much better than this. Ffs.
 
Allele said:
I just finished watching the segment with Karin's speech. I gasped out loud at the second state reporting, out of control ignorance.

Devastating, powerful, heartbreaking, brave.

The worldwide suffering of this disease is just too much, and totally unnecessary--it must stop now! Humans can do
so much better than this. Ffs.
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Yes, it was incredibly brave of the mother to tell this story. It is so important that these stories are shown, in order to make people recognise that we are talking about problems on a structural level regarding families with ME patients, not just individual cases who just might have been a bit unlucky in their meeting with the public health services. But I do fully understand those who don't want to talk about matters like this in public.

Her daughter was part of the ME documentary that was recently aired on national television in Norway, and the same channel wrote an article about the family (mentioned here in the news from Scandinavia-thread). There have also been a few articles in the family's local newspaper. Very brave parents and daughter. I am in awe!
 
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