• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Pix/reports from the #Missing Millions protests today

Sushi

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
This one really got to me:
CjVIsTqWUAA0ZI-.jpg
 
ahimsa

ahimsa

ahimsa_pdx on twitter
Messages
1,921
My niece and her husband went to the protest in Seattle, Washington and found my shoes.

They said there was a power outage between about 11:30 am and 1:00 pm so there was a lot of foot traffic - an unexpected bonus for the protest because it got more exposure!

Photos (click to make bigger):

SeattleTanShoes-small.jpg

SeattleFlipFlops-small.jpg
 
J

Jennifer J

Senior Member
Messages
997
Location
Southern California
I am so moved by the #Missing Millions and all of you. Thank you, thank you for all your efforts! I'm laying here in my bed crying: with relief, with sorrow for all the lose and suffering everyone has endured, and with so much pride (I hope that's the right word to use) for everyone. You all are amazing! :star: Thank you, from the bottom of my heart I thank you. :heart:
 
JaimeS

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
acouchy said:
I was looking through the Instagram posts for #MIllionsMissing and saw this post...
https://www.instagram.com/p/BF10wp5kqQh/?taken-by=ubthecure
Appears to be posted by someone walking by who took an interest... made my day. :)
Click to expand...

I got two freelancing job offers today, and said that I was quite busy today, and could the client wait until tomorrow for an answer? I don't take writing jobs unless I look at them pretty closely. I mentioned something about the #MillionsMissing and said, "I'm sure a lot of your freelance writers have ME/CFS because you can work from home." Something very simple.

Both responses were wild. "I have SLE," one said, "and I think that what you're doing is incredible." The other clearly had no connection to chronic illness of any kind, but said, "I looked at #MillionsMissing and re-tweeted. So cool!"

I was at an eye appointment yesterday and told someone I was working on a protest and she insisted on writing down everything from the right hashtag to use, to the #MillionsMissing site. In all three cases I made no real 'pitch'.

I'm feeling overwhelmed and grateful and my heart is completely full. Thanks to everyone who had a hand in this.

Also, I know I've said this before, but I can't imagine where my health would be RN without Phoenix Rising. I've found support here and so, so, so much information and useful debate. Our community is full of helpful, clever, passionate people, and I'm so glad I got to hear their voices today through Twitter, Facebook, and Instagram. We trended on Twitter! We trended on Facebook! We got press attention!

More later, when my brain is back online, but just... :balloons::hug::hug::hug::balloons:

But for now: :sleep:

-J
 
acouchy

acouchy

Unwilling ME/CFS Participant Since 1996
Messages
84
Location
Canada
JaimeS said:
I got two freelancing job offers today, and said that I was quite busy today, and could the client wait until tomorrow for an answer? I don't take writing jobs unless I look at them pretty closely. I mentioned something about the #MillionsMissing and said, "I'm sure a lot of your freelance writers have ME/CFS because you can work from home." Something very simple.

Both responses were wild. "I have SLE," one said, "and I think that what you're doing is incredible." The other clearly had no connection to chronic illness of any kind, but said, "I looked at #MillionsMissing and re-tweeted. So cool!"

I was at an eye appointment yesterday and told someone I was working on a protest and she insisted on writing down everything from the right hashtag to use, to the #MillionsMissing site. In all three cases I made no real 'pitch'.

I'm feeling overwhelmed and grateful and my heart is completely full. Thanks to everyone who had a hand in this.

Also, I know I've said this before, but I can't imagine where my health would be RN without Phoenix Rising. I've found support here and so, so, so much information and useful debate. Our community is full of helpful, clever, passionate people, and I'm so glad I got to hear their voices today through Twitter, Facebook, and Instagram. We trended on Twitter! We trended on Facebook! We got press attention!

More later, when my brain is back online, but just... :balloons::hug::hug::hug::balloons:

But for now: :sleep:

-J
Click to expand...

That is great news. So nice to hear that people are taking a real interest. I have not had much luck in my attempts to raise awareness and have had some heartbreaking things happen lately. I really needed some good news to help restore my faith in humanity. I agree with you about having a full heart. When I saw the post I wanted to hug the person for taking a minute out of his day to take an interest in the protest and for sharing what he learned. So grateful to everyone who worked on this project.
 
ahimsa

ahimsa

ahimsa_pdx on twitter
Messages
1,921
I found another article on the #MillionsMissing protest here:

http://www.ourbodiesourselves.org/2...highlighting-an-illness-whose-toll-is-unseen/

I don't have a news alert and I didn't see it on twitter. How did I find it?

The link was posted on a blog that I read regularly. A couple weeks ago I posted a note about the upcoming protest in one of the "open threads." I didn't think the blog owner would necessarily follow-up. But I thought that some others who read her blog might have an ME or CFS diagnosis - a lot of people read her blog.

So it makes me happy to see that the blog owner included this link in her list of recommended reading today!
 
J

Jennifer J

Senior Member
Messages
997
Location
Southern California
Kati said:
Someone sent a pair of shoe for the Seattle protest, and had a thought for Amberlin. It's quite touching.
Click to expand...

That brought tears to my eyes. That is so touching. If this is done again, maybe each of us that can, can send shoes for other members and people with this illness we know and have lost. I really like that they did that. I'm so moved by it.
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
JaimeS said:
Our community is full of helpful, clever, passionate people, and I'm so glad I got to hear their voices today through Twitter, Facebook, and Instagram.
Click to expand...

I agree - I had such a sense yesterday of really "seeing" so many of us, and getting a sense of the vastness of the missing, and of what we've all missed from our lives. Every time I saw a pair of shoes I'd imagine someone standing in them.

Such a genius idea, whoever thought of this.


:balloons::hug::hug::hug::balloons:
Click to expand...

:thumbsup::thumbsup::thumbsup::thumbsup::thumbsup:
 
Ben H

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
I think yesterday was the first time I felt real hope for this illness since becoming ill. I didn't expect to be so affected by the protests, but I was really touched and am so grateful to everyone who made it, to everyone that will be crashing because of the exertion. I watched the live streams and it gave me a real sense of connection, and community for this illness I haven't felt before (bar on here).

Especially grateful Ron Davis and Janet were involved, and I truly believe he is our absolute best hope. Some of my money each month is going to him now as I truly believe he will crack this bastard disease. The mitochondria have always been heavily implicated, and am so glad, but not suprised, he is looking there.

Anyway wittering on. Huge thanks to everyone involved, I am very grateful.

B
 
You must log in or register to reply here.