May 2019 - Awareness Week including Millions Missing

Carol Monaghan at 26.00 ish and again around 41.00

 

Was there any video from the San Francisco event?

 

article in german
https://www.tagesschau.de/inland/mecfs-erschoepfungssyndrom-107.html

includes video of #MillionsMissing in Munich

google translate
https://translate.google.com/transl...cfs-erschoepfungssyndrom-107.html&prev=search

 

Germany

The three #MillionsMissing visibility actions in Germany – in Berlin, Munich and Halle – were amazing.

During the last week we had more press about ME in Germany than ever before (and new press is still being released). The link above that @Sly Saint kindly posted is from the national news!

At the Berlin protest were speeches from the Charité Berlin (Prof. Scheibenbogen's team), the German Association for ME/CFS, the Lost Voices Foundation, #MillionsMissing Germany, the Green party, live songs from the Unrest soundtrack, a "black box" to "transform" people into pwME...

First pics (many more coming): https://www.facebook.com/pg/mmissinggermany/photos/?tab=album&album_id=2108012669496810

Livestream from Berlin:

https://www.youtube.com/watch?v=ExjlmTwmFt4

 

Interview with Carol Monaghan MP

Code:

https://www.facebook.com/meactionscot/videos/1095702387277409/

 

Don't know where to put this, so I leave it here:

I want to thank all who were and are busy with all the highly relevant things currently happening--the ME awareness week, the media coverage and recovering from attending May 12th events, plus dealing with the newly released PACE trial data, the work involved in conceiving better NICE guidelines, and surely many other issues.

Since I'm only able to skim a bit and have a more or less arbitrary occasional look at some threads, I won't be able to thank you individually for your contributions to and endorsements of all the good things that are happening these days, [edit] as well as your rigorous critique of all the bad things--so here's a virtual collective 'like' from me for all the important posts and comments on so many threads.

Wishing you and particularly those who have to recover from these busy days all the best!

 

Great statistical reference- should enable it to hit home a bit better

 

Link to smugmug with Glasgow pics.
The pandas area reference to the lack of specislists - there are more pandas in scotland (2) than specialists for ME (1)


https://meaction.smugmug.com/MillionsMissing-2019/United-Kingdom/GLASGOW/

 

Yup! I used it this morning on Radio Solent!

 

Thank you ALL for the support, encouragement, organising, volunteering and everything in between in the lead-up and during #MillionsMissing and the support S4ME has given to this campaign <3 We have had soooo many demos and amazing protests across the UK, a record number (over 30!) this year. MPs have spoken at various demos, including Carol M., David Drew, Louise Haigh, Alex Sobel, etc (and those are not all the MPs that attended or spoke at a demo!). There's definitely MORE to be done, lots more!, and we will continue to fight, together!!

Thank you to all involved and especially to #MEAction UK and #MEAction Scotland volunteers! <3 Was really grateful to find this thread now and my apologies for jumping in so late, the team was dedicated to making all these demos happen

 

From Australia:

Sally Black wrote a heartwarming story about how Millions Missing Palm Cove turned out, despite the tshirts not turning up in time and not getting to the beach!
https://meaustralia.net/2019/05/12/millions-missing-palm-cove/

At Perth’s Million Missing was federal Greens’ Senator Rachel Siewart and former Senator Scott Ludlam, plus Helen Donovan, Alem Matthees’ Mum.
https://meaustralia.net/2019/05/13/millions-missing-perth/

Stories by speakers from the Sydney and Melbourne events coming over the next few days. Being mostly bedbound, it’s been lovely to hear about them all!

 

Merged
Open Medicine Foundation (OMF) posted this video on twitter, a slideshow of the photos displayed in Times Square on May 12th:

https://www.youtube.com/watch?v=6_GRkPAZe2o

 

@ahimsa . How did your library event go?

 

Great video @JaimeS - gets prevalence/ funding issue across.
https://twitter.com/user/status/1128082355602710529

 

Empty, meaningless words I'm sure but it shows that awareness is growing. For those not aware, he is the UK's Chancellor of the Exchequer (in charge of the economy in plain English) so at the highest level of the ruling Conservative political party.
https://twitter.com/user/status/1127126058728292353

 

Very powerful demo - great idea, @JaimeS!

 

That’s great! Always good to quote back at him and his colleagues when asking them for money!

 

Let me know if this has already been posted:

Source: Evening Times

Date: May 12, 2019

URL:
https://www.eveningtimes.co.uk/news...joins-mass-lie-down-protest-in-george-square/

Glasgow singer Stuart Murdoch joins mass 'lie down' protest in George Square
----------------------------------------------------------

Belle and Sebastian frontman Stuart Murdoch joined hundreds in George Square taking part in a mass 'lie down' to make a plea for more NHS specialists for a debilitating health condition. More than 21,000 Scots are thought to be suffering from myalgic encephalomyelitis (ME), supported by one specialist nurse and there are no dedicated NHS consultants. Campaigners say if the nurse, who is employed by NHS Fife, was to divide his time among all the people who could benefit from it, he would be able to devote less than a second a week to each one.

Patients say the amount of money being spent on research is also 'paltry' compared with many other illnesses, with £4 per patient spent on ME research per year between 2006-2015 in the UK compared with 80 pounds per patient for research into multiple sclerosis. Yesterday's event in George Square is part of a global week of action being
organised by #MEAction from May 5th to 12th. Millions Missing will see the lining up of 'empty' shoes with messages from ME patients from across the UK.

Continued at link

 

For a small event it went well!

I'm not sure whether we actually educated many new folks about ME. I did hand out a fair number of bookmarks but not very many information sheets. I think I may have educated more people in advance of our event when I was trying to put up flyers about Sunday's event!

Before our event I tried to get flyers posted on a few community bulletin boards - mostly libraries. I went to at least 5 (6?) different local branches of our library. And whenever I handed out a flyer I also gave out at least one bookmark. I think one librarian was familiar (knew someone with the illness) but most did not know about ME. I also dropped off a flyer at a nearby grocery store that has a community bulletin board.

But I am thrilled with how many folks I notified showed up to support me on Sunday. Check out the photos here:

https://meaction.smugmug.com/MillionsMissing-2019/United-States/Portland-OR/

At one point there were 14 people there (13 in the photo but my husband took the photo). I'm in the red shirt.

If my memory is correct (unlikely, but here I go anyway) there were 3 patients with ME, myself and two others. There was one person who had a daughter with ME. And one local ME patient who could not attend sent me something that was displayed on my poster.

The rest were either friends and neighbors of mine (a few have other diagnoses so I don't want to mislabel them as "healthy allies") or friends and family members of other folks who came.

I want to share one story. My husband had to make several trips to get all the stuff from the car to where we set up. When we started packing up to go he took our folding table and umbrella and walked to the car.

I was waiting, just sitting on a chair, when a young boy (12 or 13) walked over. He had been skateboarding near us for maybe an hour. I had talked to him earlier about his skateboarding moves (I enjoy talking to kids) and gave him a bookmark.

He was concerned so he asked me, "Why did that man take away your table and umbrella?" I guess it looked weird for me to be just sitting on the chair waiting! It was kind of sweet of him to be worried about me. I explained that the man was my husband and we had finished our event and we were now packing up to leave.

Then he asked me a few more questions about ME. I tried to explain using myself as an example. I said that I had to go home and lie down after sitting at the table for 3 hours. I said some people were even more sick and couldn't attend this event in person. I explained we were trying to get people to understand how serious this illness could be.

Then he asked if he could donate. (and I'm tearing up just thinking about it) I said I wasn't taking money but he could go to the website link on the bookmark if he wanted to donate. He said that he needed to get permission from his father but that he wanted to donate.

It's possible that he was just being nice, I don't know. But I thought it was very touching of him to come over to me and make sure I was okay. And if nothing else, maybe he'll pass on information about ME to his father.