May 2019 - Awareness Week including Millions Missing

[NelliePledge]

I’ve emailed our healthwatch with a link to this to see if they will post anything. Never been in contact with them before so asked how they could help our support group as well.

 

[Andy]

BELLE and Sebastian singer Stuart Murdoch will speak at an event in George Square to raise awareness of debilitating illness myalgic encephalomyelitis (ME).

More than 21,000 Scots struggle daily with the illness, with charity bosses saying they are being failed by a health service that has so far appointed only one specialist nurse to support them.

If that specialist, who works in 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.

https://www.eveningtimes.co.uk/news...e-square-event-aims-to-raise-awareness-of-me/

 

[Andy]

CanaryPod: #ToppleUncaged meets… the Millions Missing: Jessica Taylor-Bearman
In the third of six daily podcasts, I caught up with author, charity founder and campaigner Jessica Taylor-Bearman, who also lives with severe ME, which has ravaged her body, at one point leaving her unable to speak. We discussed her groundbreaking book A Girl Behind Dark Glasses, what severe ME is like, the medical profession and her hopes for the future.

https://www.thecanary.co/podcasts/2...-the-millions-missing-jessica-taylor-bearman/

 

[Cinders66]

I hope th

https://www.healthwatchsouthampton.co.uk/news/what-is-millionsmissing/

It’s admirable people are using their and Energy.
I hope these events do reflect the stated purpose of the #MM. Both would be nice but I would rather see banners and chants for MRC to guarantee funding until the research field is established rather than educate the public because ultimately whilst it’s nice to have an understanding neighbour it’s better to have treatment. I don’t think a more aware public will translate into campaigning allies.

 

[Sly Saint]

at least a lot of MEAssociation stuff this year doesn’t have the it’s real it’s physical it’s me slogan

hmm

 

[NelliePledge]

I

hmm
View attachment 7197

i know @Sly Saint im going by social media which seems to be mainly the new logo.

I’m doing a bit of guérilla customer testing to get the take of small group of friends that haven’t been exposed to ME politics to ask them what they think about the 2 logos to see if they pick up on the real/physical aspect as a concern.

 

[Andy]

 

[Andy]

Remember, if you have enough energy to get along to an event this weekend, this page, https://my.meaction.net/calendars/millionsmissing, can be used to find the closest event to you.

 

[Sly Saint]

 

[Binkie4]

Any news from any events today? I seem to remember live links to events in U.K. and US in previous years.

I think there’s a live link to San Francisco at 3pm Pacific time on OMF Facebook page.

Have I missed others?

 

[rvallee]

There was this from Global News in Canada:

 

[rvallee]

Drop the quotes on humanitarian crisis, though. It is, plain and simple. The population of a mid-sized country is basically imprisoned in their own body and almost nobody gives a damn while those who should be helping are actually making things worse.

'Humanitarian crisis' for ME sufferers in Wales: https://www.bbc.com/news/uk-wales-48229907

 

[Binkie4]

@NelliePledge
I hope your event is going well and that you are not suffering too much from the extra work that it has involved. Thank you.

 

[Andy]

We are the disappeared
The vanished
The millions missing
Blink
Snap your fingers
Gone

Read more at http://occupyme.net/2019/05/11/millionsmissing-2019/

 

[NelliePledge]

@NelliePledge
I hope your event is going well and that you are not suffering too much from the extra work that it has involved. Thank you.

Thanks @Binkie4 im all prepped out now. Just resting now as I have to be out early for me to be there by noon

 

[Binkie4]

@Ok. So yours is tomorrow. I wasn’t sure what is happening today and what tomorrow. I think both days are involved. Thanks and good luck anyway.

 

[chicaguapa]

I’ve emailed our healthwatch with a link to this to see if they will post anything. Never been in contact with them before so asked how they could help our support group as well.

We submitted this to them as a completed article. They asked me for something last year after coming down on the day. A community journalist also came to MM last year to write an article and she interviewed a few people afterwards. So I combined the two. It took so long to get it finished that we decided to hold onto it and wait until this year’s MM to publish it.

 

[Binkie4]

Read more at http://occupyme.net/2019/05/11/millionsmissing-2019/

Great poem/ piece of writing.
Expresses just how I feel at the moment. Thank you Jenny.

 

[Andy]

This is why there's so many abandoned shoes on College Green
Scores of abandoned shoes have been left on College Green today, each pair represents a person missing from Bristol because they are too ill to leave their homes.

https://www.bristolpost.co.uk/news/bristol-news/theres-many-abandoned-shoes-college-2857734

 

[ME/CFS Science Blog]

Thread merged

I know that not all forum members are on Facebook or Twitter, so I thought this thread might be a good place to share some pictures and info on the Millions Missing events this year.

I helped organize a Millions Missing event in Gent, Belgium. We had a really cool location in the center of the city.

Unfortunately, I couldn't be there myself but from the video's, pictures and stories I've seen and heard, it seemed to be a great success. Laying out empty shoes with testimonies of ME-patients is a really powerful concept. People passing by seemed to be genuinely interested to learn what was going on.

Funny story: there were a lot of tourists in Gent and one of our Millions Missing volunteers managed to get the city guides to explain what was going on. So a little later a city guide was explaining to German tourists: "Auch in Berlin gibt er ein Millions Missing Manifestation..." Thought that was pretty cool.