May 2019 - Awareness Week including Millions Missing

[Binkie4]

 

[Binkie4]

Above #2 is photo of protest in New York, taken by my son this afternoon.

I can see Omar Wasow just left of centre near the coffin. Greenrucksack.

ETA: location is edge of Central Park by Columbus Circle

 

[ScottTriGuy]

Millions Missing Canada - downtown Toronto - in front of Varsity Stadium - there was a juxtaposition between the fit athletes training in the stadium with our sick selves...

 

[Suffolkres]

Missing Millions Norwich!

 

[Andy]

On front page of BBC News website, in the Long Read section

My ME and me: 'I don't remember what it's like to not be ill'
For the past 15 years, Hannah has struggled to live a 'normal' life with her invisible illness

https://www.bbc.co.uk/bbcthree/article/fa187a47-1c6c-49c6-a8e1-4d9b54fe172c

 

[Suffolkres]

 

[Andy]

The Southampton demo is already set up and ready to go

 

[Sly Saint]

eta: this was yesterday #MillionsMissing was at number 11.
see this post https://www.s4me.info/threads/may-2019-awareness-week.8142/page-2#post-167184
to see time for your time zone to blitz social media

 

[chicaguapa]

A few pics from Southampton today.

We put down 378 pairs of shoes which grew to over 450 throughout the afternoon. Two city councillors came down, one who is in charge of adult social care in Southampton. Both asked to be kept in touch with MEAction’s campaign. The other gave me an interesting statistic which is that the population of Southampton city centre is 250,000, ie the number of pwme in the UK.

 

[rvallee]

Straw by straw, the camel's back will break.

 

[Andy]

Video of the livestream of MillionsMissing Glasgow

https://www.facebook.com/meactionscot/videos/286906638862092/

Interview with Chris Ponting starting around 5 mins in.

 

[Webdog]

San Francisco City Hall.

 

[NelliePledge]

Sorry don’t have the brain power to post pictures but for those who have Facebook see MM Nottingham

 

[andypants]

Sorry don’t have the brain power to post pictures but for those who have Facebook see MM Nottingham

Here ETA: Well done!!!

 

[andypants]

Some pics from MM Oslo:



Very well attended, list of speakers had to to be limited as so many wanted to contribute. Anette Gilje played and sang both before and during.

 

[Kalliope]

There was a MillionsMissing event today in Stavanger, Norway. It was quite well attended with 100 people present and 2,3 K (and counting) viewers via streaming.

The compère for the day was Eirin Sund, leader of the local union.
Program:
Patient talk from Emma, 10 years, read by Ella, 11 years
Video greeting from prime minister Erna Solberg
Video greeting from Jen Brea
Patient talk from Kristine Ruud Berdal
Specialist talk from prof. Ola Didrik Saugstad
Video greeting from drs Øystein Fluge and Olav Mella
Carer talk by Mette Schøyen read by Eirin Sund
Video greeting by Ron Davis

Streaming of the whole event can be viewed here
This will eventually be published on YouTube with English subtitles

Video greeting from Jen Brea

Video greeting from Ron Davis


You can find the video greeting also from the prime minister and Fluge & Mella (both in Norwegian, English subtitles coming) at MillionsMissing Stavanger's Facebook page.

The local newspaper Stavanger Aftenblad had an article about the event. It's paywalled, but I think pictures are available. One of the organisers has had ME for 24 years and despairs over the slow progress. She doesn't want young people to have the same kind of life she's had. Compere Eirin Sund says it's very rewarding to be part of this event, as she knows people with the disease. The article also includes the prime minister's video greeting.
Stavanger Aftenblad: Markerte ME-dagen i Stavanger sentrum: - Jeg er fortvilet over hvor stille dette fagfeltet har vært

 

[Andy]

This #MEAwarenessWeek we gave a seminar for invited researchers from the Clinical Research Department at the London School of Hygiene & Tropical Medicine.

It's important to spread awareness among the #research community - we try to do this EVERY week, and are grateful to everyone around the world doing the same.

#MECFS

https://www.facebook.com/mecfsbiobank/posts/2302725203108243

 

[Andy]

 

[JaneL]

On 12th May 2019 hundreds gathered in Sheffield city centre along with 3 MPs to demand research funding for the Millions Missing due to Myalgic Encephalomyelits. We’ll be releasing highlights from the action soon but here’s a teaser.

 

[Andy]

In the sixth and final daily podcast, I caught up with David Tuller, one of the most prominent voices in the ME advocate community. He has gained a respected reputation for his work surrounding the PACE trial and other problematic pieces of research. He frequently publishes material on the Virology Blog. So, we discussed in depth the controversy surrounding the PACE trial, ME as a disease and more.

https://www.thecanary.co/podcasts/2019/05/12/canarypod-topple-uncaged-meets-the-millions-missing-david-tuller/