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BIG THANKS to the #Millions Missing protest organisers!

Sasha

Fine, thank you
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There was a lovely message on another thread:

Ben Howell said:
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.
...and I feel exactly the same way. Yesterday was phenomenal, historic, amazing! I don't have the words to express how grateful I am to the people who organised it. I really just don't have the words and I've got tears of gratitude running down my face as I'm typing this.

I know they'll all be crashed out today (and for several days) but I just wanted to post a

:bouquet::star::balloons: HUGE THANK YOU :balloons::star::bouquet:

to them all!

I only know to tag @JenB, @JaimeS but I'm sure there are many more!

And thanks so much to all the people who took part, in whatever way. :)
 
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shannah

Senior Member
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@Justin30

Some wonderful pictures of your parents holding their signs are circulating on Facebook Justin. Sending thanks and hugs to them from Ontario. So grateful for their able bodied support of the community and of you.

Not everyone's parents are like this and you are very fortunate. Blessings to them.
 

Vasha

Senior Member
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I so wish I could have been at my local protest in person.

But knowing my shoes were in DC--brilliant idea, that!--meant a great deal. Knowing that others were standing there, advocating for us, meant even more.

So, so many thanks. @JenB, @JamieS --and everyone else--rest and recover well, and please know how much we appreciate it.

-Vasha
 

Comet

I'm Not Imaginary
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:star: :bow: :heart: :gift: :trophy: :bouquet: :tulip: :globe:
#MillionThankYous to everyone who worked so hard and put their health on the line to pull this off!

I never expected this to touch me the way it did. I will never forget the way it felt watching the protests unfold, city after city, yesterday. Incredible to watch this brilliant idea come to life.

Then to have Ron Davis put icing on the cake and make his mitochondria announcement...!!! Wow!

:globe: :cool: :star: :star: :star: :star: :star:. <--- You guys are all global rock stars!!!
 

AndyPR

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Is this published some where? what is the detail??? Can't leave us hangingggggggggg.

this is the only link http://www.sciencedirect.com/science/article/pii/S1567724913002390 I think somebody posted is this related to that announcement? I am confused.
Personally, I would assume that @Comet was referring to Ron's speech at the Missing Millions protest yesterday, details are in this thread http://forums.phoenixrising.me/inde...ker-looks-like-a-mitochondrial-problem.44821/, I could have that wrong though.
 

Comet

I'm Not Imaginary
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Is this published some where? what is the detail??? Can't leave us hangingggggggggg.

this is the only link http://www.sciencedirect.com/science/article/pii/S1567724913002390 I think somebody posted is this related to that announcement? I am confused.
Personally, I would assume that @Comet was referring to Ron's speech at the Missing Millions protest yesterday, details are in this thread http://forums.phoenixrising.me/inde...ker-looks-like-a-mitochondrial-problem.44821/, I could have that wrong though.
Yes, that is what I was referring to. Sorry for the delay in answering. Ron Davis hinted at getting closer to a biomarker and that perhaps our mitochondria are misbehaving.
 

Hutan

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I'd like to acknowledge Karyn Adams who organised the Melbourne event, no doubt with a wonderful team. I haven't seen the Melbourne team mentioned much so far.

The location of the State Library was fantastic - so many people will have seen it - and it made for great photos. I've recently moved away from Australia so could not be part of the event but was so pleased to see its success.

The Millions Missing concept is inspired. I'm looking forward to it growing, with next year's event even more powerful.
 
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Yogi

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What can I say :jaw-drop:- WOW !! - Wednesday was phenomenal. :star::star::star:

My eyes and head were hurting from looking at the computer screen in my bedroom for so long but it was great to see all the pictures and videos. It was just like being virtually there. After being severely ill for years it has given me a lot of hope.

The last few days have been unreal and it feels like a dream has replaced the nightmare that I (and many us) have been stuck in for years.

I just wanted to :heart::heart: THANK everyone at #MEAction for organising this. It was a huge success.

I have given small donations to both #MEAction and Open Medicine Foundation who are doing so much great work right now.

I like many sometimes feel that my small donation cannot make much difference. But collectively we are a powerful force. It really feels that the combination of #MEAction and OMF are really potent combination and it has sparked a:fire::fire::fire: FIRE :fire::fire::fire:under the global ME community.

http://www.meaction.net/donate/

http://www.openmedicinefoundation.org/donate-to-the-end-mecfs-project/

Every little helps..donate if you please can.

This was a great photo and my fave.

Prof Ron Davis in his red #millionsmissing t-shirt and OMF to the rescue of global patients and their son Whitney with the urgency and speed of an emergency fire brigade after 30 years of disdain. The picture says it all.



Would make a great photo for any news media coverage and to add to the MEAction protest report @JaimeS
 

JaimeS

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Thank you SO MUCH, @Yogi ! OMF is working really hard, and I can personally vouch that #MEAction worked our tails off. It was so amazing that it trended on Twitter and Facebook -- but we have not yet begun to fight!

I did want to remind people to spread the word that Belfast's protest is a little down the line -- click on the link or check out the #MillionsMissing locations page for details.

I'm mostly not working today, though... I needed a bit of a break! I've downloaded your photo, though, and will add it to our repository -- it's a great one. :D

-J
 

Justin30

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The Millions Missing concept is inspired. I'm looking forward to it growing, with next year's event even more powerful.
I hope they do it every couple of months....this is how AIDS got more funding right away....

With stats from Leonard Jason:

13% work Full time
Less than 20% part time
25% housebound bedridden
And eveyone in between seems to me like the in betweeners are likley mostly housebound or only able to get out briefly for just the neccesities...thats my guess...with a portion of complete relapse recover relapapse etc.

Regardlesss the stats aren't good....

The protesting needs to be in peoples faces constantly in order to be effective grow to more states and provinces....etc..

We Desperately need a center of Excellence.