#Millions Missing 27 Sept 2016 - post coverage, videos, pix, tweets here

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Sasha

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It's almost on us! There was some amazing live video footage etc. in the May protest. Now it's going to be an incredible 25 cities in a one-day, global protest!

The first protest looks to be in Melbourne, Australia - and as the sun comes up on the rest of the world it's South Africa, Europe, the UK, Argentina, Canada and the United States.

It's already Tuesday the 27th in Melbourne - gone 1 a.m. - by the time I get up in the morning here in the UK, they'll be well under way (if not finished! I don't know when they're on).

Post the coverage here, folks! :)

Good luck to all those attending in person - don't wear yourselves out.
 
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charles shepherd

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Millions Missing demos on September 27th - UK media coverage

OXFORD

Feature in the Oxford Mail:

http://www.oxfordmail.co.uk/news/14...erers_of_debilitating_condition/?ref=mr&lp=16

Nicki Strong (MEA trustee who is helping to organise the Oxford event) and I have recorded interviews for BBC radio and TV on Monday 26th

These interviews should be going out on BBC Oxford Radio today (Tuesday 27th) and on BBC TV South - lunchtime news and evening news

And it may be possible for other BBC local stations where protests are taking place to make use of the medical interview, which concentrates on the key issues - medical education, research and treatment - rather than the Oxford event which Nicki has covered
 
Cheshire

Cheshire

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Excellent article in The Guardian by Nathalie Wright:
ME affects four times as many women as men. Is that why we’re still disbelieved?

Most people – including many doctors – think ME is just extreme tiredness. Also known as chronic fatigue syndrome, ME can have multiple symptoms, ranging from severe muscle pain to digestive, sleep and autonomic problems. A landmark report in 2015 by the American Institute of Medicine defines ME as “an acquired, chronic multi-systemic disease biological in nature” symptoms of which include “immune, neurological and cognitive impairment”. Yet patients are still being dismissed and disbelieved. In the UK, a survey carried out by the ME Association earlier this year found that 46% of patients thought the care provided by their GP was “poor” or “dreadful”. And 18% have no contact with their GPs, often because they have found their doctors have nothing to offer them, or worse – added to their suffering by not taking them seriously.
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https://www.theguardian.com/comment...four-times-women-men-chronic-fatigue-syndrome
 
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AndyPR

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Guiding the lifeboats to safer waters.
If you have a social media account of any type, please use it to share any coverage, along with the #MillionsMissing hashtag - the idea, along with the Thunderclap, is to get the hashtag trending, which will then increase the level of interest. I'm normally reluctant to spam my Facebook feed with ME 'stuff' but today I'm adopting the "fuck it, my life is ruined by this so I'm going to virtually shout about it all day" attitude. ;)
 
Effi

Effi

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The Dutch team on Dutch National Radio this morning!! (a patient + cardiologist Dr Visser who sees a lot of ME patients)
http://www.nporadio1.nl/gemist

Great interview! A mentioning (as per usual) of the CBT/GET movement in the Netherlands, but Dr Visser did a pretty good job explaining that that is generally not helpful (at least not for the patients he sees).

Short article from the radio's website:
Google Translate said:
ME patients: "Getting up, showering and having breakfast is an uphill battle"

ME patients are fed up. Patients with ME are not heard they say. "Complaints are regularly treated by general practitioners with comments like "get a dog or sleep a bit more" says cardiologist Frans Visser. From America to Australia will be demonstrated today. In the Netherlands too in The Hague.

empty shoes

Carolien van Leijen has ME also called Chronic Fatigue Syndrome, and often feels not heard. "Getting up, showering and having breakfast are an uphill battle. It is a neuroimmune disease. The problem with ME is that it is often not recognized. Therefore, today there is also a demonstration in the Netherlands. "In The Hague are empty shoes symbolizing the people who can not be present at the demonstration."

Big problem

"The problem is that we still know little about ME. The diagnosis is established by exclusion. Particularly in the United States there is slowly more recognition for ME "says cardiologist and ME specialist Frans Visser. 'ME is often seen as a psychological problem and that is unfair. Fortunately, in recent years there is considerable progress made in the investigation. In the future it should be demonstrated through blood tests if anyone has ME or not. "

Action

For the moment it is not there yet. Because the disease ME does not get the recognition it deserves, it is unknown how many people in the Netherlands suffer from the disease. Frans Visser: "The estimates range from 20 to 80,000 patients." Van Leijen hopes the demonstration will contribute to greater recognition today; "I hope for a high turnout. Many people have said they would be at the demonstration. "
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