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

Did everyone go home at 5pm? Because the BBC finally posted an article on #MillionsMissing (Correction : ME or CFS ) at around that time...

http://www.bbc.co.uk/news/newsbeat-44094429

Protesters have gathered in London calling for more research into chronic fatigue syndrome.

The long-term illness, also known as ME, can leave people bedbound for years - but despite its severity it's still not well understood.

It comes days after a leading expert told a Newsbeat documentary that one of the most common treatments for it should be scrapped.

It's thought to affect around 250,000 people in the UK.
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As articles go, it's totally pathetic. And it doesn't actually mention #MillionsMissing.
 
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What makes me incredibly sad are the by now countless people who have put themselves out there today for the first time, trying to raise awareness, only to be completely ignored by their healthy friends and families.

What makes me really proud of the ME-community is the boundless support between PwME. There's now a whole campaign going on fb to like and comment each others posts, so people don't feel alone and abandoned and get the traction they need. It's weird that 'likes' count that much, but I guess it's the virtual equivalent of crossing the street to avoid talking to people.
 
I haven't seen anything on tv yet. There's been a massive TUC march covered, plus a knife crime march through London today Also covered. Our movement is equally newsworthy and Obviously our protests can't be marches but I think we are going to need to bump up the numbers attending, at London especially, to get national attention. Edinburgh looked the largest? And was well placed in a square with people all around. Plus they did a lie down in memory of the severe which was powerful.
 
Edinburgh was by far the best I have seen...it was brilliant. Just saw New York there, poor numbers....it didn't look like a great crowd. Its true we need our healthy friends but if they can't like an M.E related facebook post, there is little chance of them taking to the streets. Any post M.E related gets very few likes on my page which I find very hurtful but I still post now and again as not posting is just going back to being invisible....an emotional day...Carol Monaghan was excellent
 
It's on channel 4 now
They've started featuring a severe in bed which is good. They're saying what's she waiting for ....

They now say we say it's underfunded, misunderstood and dismissed by NHS.

The severe girls mum is very good at blasting the patient blaming

Mentions the immune system, and our opinion standard treatments does more harm than good

Features the shoes as representing missing potential, poignant
Interviews now mother and dad of bedridden girl

DOH end with the joyful news of them investing and finding treatments (see other post of mine how this is misleading, back covering bullshit)

Happy ending with recovered endurance swimmer ??? (Who's idea?)

Generally Pretty good for us.

Weldone to all #ME activists involved today who got a lot the issues actually covered on national tv news. I've just rewatched it and the placards looked brilliant. Thanks to cherry for letting them film her so sick too. I feel # MM 18 has been a success now it reached wide audience, it's made a mark.
 
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Sasha said:
I missed that! I'm going to catch it on Channel 4 + 1 (Freeview channel 13) in an hour.
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Sunshine3 said:
Edinburgh was by far the best I have seen...it was brilliant. Just saw New York there, poor numbers....it didn't look like a great crowd. Its true we need our healthy friends but if they can't like an M.E related facebook post, there is little chance of them taking to the streets. Any post M.E related gets very few likes on my page which I find very hurtful but I still post now and again as not posting is just going back to being invisible....an emotional day...Carol Monaghan was excellent
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Yes it looked great. Maybe having one big rather than several smaller is the way to go, if people can travel. But it really well done. Bristol looked good too. London was thwarted by the rain and looked a bit cramped but I've still to see footage from that.
 
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