P2P Workshop for ME/CFS Stand-In Lay-Down Protest Dec 10, 2014

[caledonia]

This protest was organized by one of our members @OneWaySurvival. He is on his way to Washington DC even as we speak. I've been helping out back channel, as have several other advocates. We have made a great team and I'm proud of everyone for pulling this together on short notice.

Please share the following info on your email, Facebook, Twitter:

Suggested email post:

We're mad as hell and we're not going to take it any more!

The final P2P Workshop for ME/CFS will take place Dec. 9-10 in Bethesda, MD. Disabled ME patients, along with healthy volunteers, will be protesting this ill-conceived redefinition project on Dec. 10 in front of the NIH Gateway Center on South Drive, starting at 7:30 a.m.

If you are going to be in the Washington DC area, please join us!

For more information on how you can “Stand-in, Lay Down” for an M.E. patient, and sign-up to join the protest of the P2P Workshop, please visit http://www.meadvocacy.org/event_calendar

You can view the press release here: http://www.meadvocacy.org/disabled_americans_protest_us_national_institutes_of_health_s_p2p_meeting


Please share!

=-=-==-=-==-

Suggested Facebook Post:


P2P Workshop for ME/CFS Stand-In Lay-Down Protest Dec 10, 2014

ME advocates will be protesting the ill-conceived redefinition project on Dec. 10 in front of the NIH Gateway Center on South Drive, Bethesda, MD starting at 7:30 a.m.

Info and Signup: http://www.meadvocacy.org/event_calendar

Press release: http://www.meadvocacy.org/disabled_americans_protest_us_national_institutes_of_health_s_p2p_meeting

Share!

-=-=-=-=-=

Suggested Tweet #1:


P2P Workshop for #MECFS #CFS #MYALGIC #STOPP2P4ME Stand-In Lay-Down Protest Dec 10, 2014 http://www.meadvocacy.org/event_calendar Share!

Suggested Tweet #2:

P2P Workshop for #MECFS #CFS #MYALGIC #STOPP2P4ME Stand-In Lay-Down Protest Dec 10, 2014 http://www.meadvocacy.org/disabled_americans_protest_us_national_institutes_of_health_s_p2p_meeting
Share!

 

[caledonia]

We have already sent out the press release to several ME friendly journalists, as well as contacted the local Bethesda news channel 7 On Your Side WJLA.

The protest will also be filmed by documentary crews from Ryan Prior's "The Forgotten Plague" and Jen Brea's "Canary In A Coalmine" as well as by OneWaySurvival himself.

We hope to have some kind of footage to post on our Youtube channel so it can be reposted here and around the net.

 

[catly]

Thanks @OneWaySurvival and @caledonia --I'll be there is spirit as I listen to this P2P fiasco again tomorrow! I would much rather be there protesting in person.

 

[Gingergrrl]

@caledonia and @OneWaySurvival Thank you so much for all that you are doing on behalf of the rest of us who are not able to participate. We are all very grateful and please don't think for a second that your hard work goes unnoticed because it doesn't and it matters deeply. Thank you so much.

 

[Wildcat]

.
Gingergrrl wrote:
"@caledonia and @OneWaySurvival Thank you so much for all that you are doing on behalf of the rest of us who are not able to participate. We are all very grateful and please don't think for a second that your hard work goes unnoticed because it does and it matters deeply. Thank you so much."



I second that. Thank you very much. Its an amazing action, in such a short space of time.

Best of luck to you all on the day(s).

.

 

[caledonia]

Selected photos from the protest. You can see all 24 of them on Twitter #STOPP2P4ME and Facebook https://www.facebook.com/www.May12.org?ref=hl

 

[Gingergrrl]

@caledonia Thank you so much for posting all the great photos of the protest and for all you guys are doing for us today! I wish I knew each one by name, so I could thank you all.

 

[RustyJ]

http://www.shoutoutaboutme.com/news/us-disabled-hold-protests-at-bethesda/

 

[Gingergrrl]

@RustyJ Great article and thank you for posting it!

 

[dancer]

Powerfully written article. I'd be tempted to complete despair by the P2P of the past two days. What helps me is the courage and heart of other patients who spoke up in the meeting and protested outside the meeting. Thank you to all of you!

 

[RustyJ]

Powerfully written article. I'd be tempted to complete despair by the P2P of the past two days. What helps me is the courage and heart of other patients who spoke up in the meeting and protested outside the meeting. Thank you to all of you!

To be fair it was a chop and paste from what ME Advocacy already published. Making available the photos was also a good move. Credit to the team there. And I like what they did at the demo, from what I could see in the pics.

The shot of Tom's son holding the placard was quite powerful.

I'm too sick to do much first-hand research, so such resources are invaluable.

PS, Jeez, now I hope it was my article you were talking about, and not the original release.

 

[dancer]

To be fair it was a chop and paste from what ME Advocacy already published. Making available the photos was also a good move. Credit to the team there. And I like what they did at the demo, from what I could see in the pics.

The shot of the little girl holding the placard was quite powerful.

I'm to sick to do much first-hand research, so such resources are invaluable.

PS, Jeez, now I hope it was my article you were talking about, and not the original release.

Yes, it was. Although both were great...the ME Advocacy resources AND your article...and the photos, and the protesters... it's all good. THANK YOU!

 

[caledonia]

http://www.shoutoutaboutme.com/news/us-disabled-hold-protests-at-bethesda/

Thanks for writing about this on your blog.

 

[mango]

i mentioned this demonstration in one of the swedish me facebook groups, and just want to let you know that so many of us are deeply grateful. it really means a lot, even to us over here in a far away part of the world. thank you, all <3

 

[Rrrr]

Idea: Let's flood P2P's email with this short note below. I think it has to be sent to them TONIGHT for them to consider including it in their initial report. Feel free to forward or post on social media, without my name or email attached.
___

FLOOD P2P'S EMAIL -- TONIGHT ONLY (10/10/14)
Their email: prevention@mail.nih.gov


Dear P2P Members,

Please consider this in your discussions as you prepare your report on ME.

ABCNews, California, Dec 8, 2014
http://abc7news.com/428225/
"New technology could help doctors ID chronic fatigue syndrome in patients"

Best,
XXXXXX
XXXXX

 

[Christopher]

Villains who twirl their moustahces are easy to spot. Those who clothe themselves in good deeds are well-camouflaged.

 

[OneWaySurvival]

Hi all, we are back home safe. I am so glad this all came together so we could show the NIH/HHS just a glimpse of who we are and why we are angry about being ignored and mistreated, and why we are opposed to the P2P/IOM fiasco.

I wish we could have had more time to build more posters so every M.E. patient who wanted to be there could have been pictured right there on the sidewalk outside NIH. Even so, I am glad that exactly 12 pictures came in for our 12 chairs on Monday afternoon! It was unbelievable. Huge props to @caledonia et al for lighting quick pre-planning and communication during the lead up, and also for sharing news with the M.E. community while the event was happening.

@RustyJ you did an awesome job publishing the post-event recap. It was streamlined and you used one of my favorite pictures from the whole event and added the powerful B&W effect. Just to correct one minor detail in the comments...both my kids are sons, and they get their angelic faces from their Mom. To be fair, they were bundled up in winter gear so it is hard to fault you there. No worries.

To all: Your kind words have kept us going this past week, even when it seemed we were in over our heads. I am surviving the dreaded but expected crash experience and will live to fight another day. Knowing we are together on this makes the additional CNS pain worth it because it counts for something this time.

 

[RustyJ]

@RustyJ you did an awesome job publishing the post-event recap. It was streamlined and you used one of my favorite pictures from the whole event and added the powerful B&W effect. Just to correct one minor detail in the comments...both my kids are sons, and they get their angelic faces from their Mom. To be fair, they were bundled up in winter gear so it is hard to fault you there. No worries.

In my defense, my eyesight is not what it was, and I did express some doubt. However it has been fixed. My apologies to all parties offended.

Incredible effort in such a short time, btw. And I just read your partner's blog. It's more heartfelt than the show piece. Well done to you all.

 

[OneWaySurvival]

We have already sent out the press release to several ME friendly journalists, as well as contacted the local Bethesda news channel 7 On Your Side WJLA.

The protest will also be filmed by documentary crews from Ryan Prior's "The Forgotten Plague" and Jen Brea's "Canary In A Coalmine" as well as by OneWaySurvival himself.

We hope to have some kind of footage to post on our Youtube channel so it can be reposted here and around the net.

Just to clarify, Jen's crew came and Ryan's did not.

Canary's film crew came the morning of the P2P Protest and got some nice shots right after we setup and things were bustling with lots of foot traffic from the metro. They did some interviews, but the conditions were windy, and the audio may not be up to snuff to use for the documentary...we will see. The images of the protest, signs and pictures alone, however, can communicate a big part of the story of opposition to the IOM/P2P and our frustration with the NIH.

Ryan was very interested, but his camera guy in the area could not make it on such short notice. I know they are very far into post-production anyway, but he thought his camera guy would want to be there as a big supporter of the M.E. cause.

My wife @Christine has now posted a complete, publicly-viewable album of photos of the Stand-in, Lay Down Protest on her Facebook page (Christine Jarrett - she is on Facebook, I am not). We also added 3 short videos from the Protest to her Youtube channel

 

[alex3619]

I suspect the IOM and P2P have a contain and ignore strategy for protests. They are not the targets in my view, but by protesting we make a public statement. At some point someone might notice, and change may start. It would be nice if journalists paid more attention.