April MEadvocacy.org Demonstration Update: Act Up 4 ME!


Late Monday, our ME Advocate coordinator arrived in Washington DC. missing her luggage!  With perseverance, the luggage was found, but our poor demonstration signs did not survive the trip.  Onward she prevailed through the night re-creating the signs for our stand-in protesters.   

Tuesday 8:30 am, traveling to George Washington University to round up our student stand-in protesters; group of 18 protesters in all.  We aimed for the maximum number before permits would be required.  Such short notice, meant no time to obtain permits. 

Each future demonstration, we expect to grow.  Sunny weather meant no rain to deal with like the March mini-demonstration.  That means more people are out and about in the streets of DC. The group soon gathered at Independence Avenue S.E. entrance across from the Rayburn building.  10:00 am, “Time to be Heard!”  The demonstrators engaged passers by, passing out “fact sheets” about ME.

By 11:05 am, our “blue capped” protesters traveled across the city in 5 cabs on the way to the White House! What a sight with 5 cabs arriving simultaneously with 18 blue capped demonstrators stepping out, holding signs and carrying large pictures of patients in the front and back around their necks.  Another snag; the direct street in front of the White House was closed off due to the visit by the prime minister of Japan!  The demonstration moved to the park area and took the time to read off some of the patients’ bios. The students were real troopers, enjoying the fact that they were helping sick patients do what they couldn’t do themselves. What a great show of enthusiasm! 

We had a very busy twittering campaign, running simultaneously with the Act Up for ME Demonstration in Washington DC.  We used the hashtags:  # ACTUP4ME - # MyalgicE - # NeuroME - # MECFS and # MEadvocacy to raise awareness for the event.  Patients were asked to tweet their US representatives using this image. 

In addition, MEAdvocacy ran a vigorous campaign, with the simple “one click” app. The message to our US representatives; “we need $250 million in funding for ME”. So far, the stats are pretty impressive.  As of tonight, the “one click” letter has been used by 108 signatures. Each signature reaches 3 representatives; making it a total of 324 letters! 

We are a small group of crashed but grateful volunteers and very happy to have had a chance to represent the voice of the ME patient in Washington DC. Our first attempt at “Boots on the Ground” for ME patients has been a great success. More pictures and video to follow. 

Our thanks goes to Susan Kreutzer for coordinating and representing us so well in DC!

and last but not least

Thank you to all our supporters!


Showing 15 reactions

  • Lawrence H Good
    commented 2015-05-01 10:23:50 -0400
    Thank you guys for the Awesome Work.
  • Deborah Waroff
    commented 2015-04-30 00:04:26 -0400
    Great stuff. Thank you.
  • Lisa Casey
    commented 2015-04-29 20:38:35 -0400
    Thank you to all who gave their time and energy to stand up for those of us with ME! So grateful!
  • Wendy Boutilier
    commented 2015-04-29 18:35:18 -0400
    A lot of hard work and we are all very grateful. Thank you.
  • Bon Marie Munier
    commented 2015-04-29 18:14:41 -0400
    Small but mighty group! Way to stand up for those of us stuck lying down~All of you will be able to say, “Remember that 1st march…?” Steps towards change; Ever Grateful!
  • Bon Marie Munier
    commented 2015-04-29 18:14:41 -0400
    Small but mighty group! Way to stand up for those of us stuck lying down~All of you will be able to say, “Remember that 1st march…?” Steps towards change; Ever Grateful!
  • J Allen Rae
    commented 2015-04-29 17:38:11 -0400
    Thank you to all of the volunteers, protestors, coordinators, etc., and to all of those that contributed either financially or with their time. let’s hope that this gives us the 250 million dollars that is needed for ME/CFS. like Sally Burch said, it does take guts to get out there. it also takes persistence to overcome the obstacles that you all had in your way. Thank you for being willing to do that.
  • Christina Cooper
    commented 2015-04-29 17:37:02 -0400
    Thank you is not enough for the act of love and compassion each protester demonstrated there in Washington DC as they represented all of the ME patients, like myself, who are confined to home by this catastrophic disease! God bless you! America please wake up and help us fight for research and a cure!💝
  • Eddy Keuninckx
    commented 2015-04-29 16:51:47 -0400
  • sharon murgatroyd
    commented 2015-04-29 14:59:35 -0400
    Thanks so much for all you have done! great job!
  • Brenda Hankins
    commented 2015-04-29 03:24:23 -0400
    Thank you for being a voice, a light, a hope, and a boot ;) for people with ME! Well done! Bravo! May 12 2015!
  • Sally Burch
    commented 2015-04-29 01:45:31 -0400
    Well done to all concerned! It takes guts to go out there and just DO IT ANYWAY!
    Here’s hoping this can be the start of a wider movement, and that others will be inspired by your action yesterday. Oh and the blue hats – good move! :D
  • Claudia Rose Goodell
    commented 2015-04-28 23:19:49 -0400
    So happy to hear this report. What an uplifting image – thanks to all the organizers and demonstrators. #ActUp4ME
  • Kate Williams
    commented 2015-04-28 22:52:02 -0400
    Thanks to everyone who was involved today! It means the world to those of us affected by this awful illness.
  • Cindy Shepler
    commented 2015-04-28 22:33:47 -0400