Sushi
Moderation Resource Albuquerque
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This one really got to me:
Pix/reports from the #Missing Millions protests today
- Thread starter Sasha
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Never Give Up
Collecting improvements, until there's a cure.
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Video of Carol Head, Janet Dafoe, and Ron Davis speaking at the SF site:
https://www.facebook.com/jamie.dubin
https://www.facebook.com/jamie.dubin
ahimsa
ahimsa_pdx on twitter
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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):
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):
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.
https://www.instagram.com/p/BF10wp5kqQh/?taken-by=ubthecure
Appears to be posted by someone walking by who took an interest... made my day.
Sushi
Moderation Resource Albuquerque
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That is so great! I can't say exactly why, but it moves me to know that my shoes were there--even if I couldn't be.
Never Give Up
Collecting improvements, until there's a cure.
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That's wonderful!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.
Jennifer J
Senior Member
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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! Thank you, from the bottom of my heart I thank you.
Thank you, from the bottom of my heart I thank you. 
Kati
Patient in training
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@usedtobeperkytina posted this on Facebook:
In honor of Amberlin Wu, one of the #MillionsMissing. Gone too soon
For those who don't know who Amberlin is, she was a brave, young woman with ME who died a few years ago. She was very talented and generous of her time and energy. She left an impression wherever she was.
In honor of Amberlin Wu, one of the #MillionsMissing. Gone too soon
For those who don't know who Amberlin is, she was a brave, young woman with ME who died a few years ago. She was very talented and generous of her time and energy. She left an impression wherever she was.
JaimeS
Senior Member
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- Silicon Valley, CA
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.
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...
But for now:
-J
JaimeS
Senior Member
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Bless you, kind sir.
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...
But for now:
-J
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_pdx on twitter
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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!
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!
Never Give Up
Collecting improvements, until there's a cure.
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Here is a the mother lode of photos:
https://symbiote.smugmug.com/Social-Justice/MillionsMissing/
You can see the effects of ME on patients and families in their faces.
https://symbiote.smugmug.com/Social-Justice/MillionsMissing/
You can see the effects of ME on patients and families in their faces.
Kati
Patient in training
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Someone sent a pair of shoe for the Seattle protest, and had a thought for Amberlin. It's quite touching.
Jennifer J
Senior Member
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- Southern California
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.
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.
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
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