Act Up for M.E. - Boots On The Ground In DC


Tuesday, April 28, 2015

10:00 am to 11:00 am
Washington, DC in front of the Capitol

11:15 am to 12:00 pm

Pennsylvania Avenue in front of the White House

Myalgic encephalomyelitis (ME) is a debilitating, neuroimmune disease affecting an estimated one million men, women and children in the U.S. It has been described as the “Hidden Plague,” “Polio-like” and a “non HIV/AIDS” disease.  Most Americans have never heard of it. Why? ME lacks prominence because the government hasn't taken this disease seriously. In the 1980s, the government renamed the disease the trivializing and belittling name "chronic fatigue syndrome." Federal research funding has been at the bottom of the barrel for decades.

A march will take place with students filling in for some of these very ill patients who cannot attend themselves. Wearing photos of real patients and carrying their biographies, students will represent patients too ill to come to DC to march on the Mall. We refuse to let them be invisible any longer. The “voice of the patient” will be heard through the students.

The marchers will circle the Capitol grounds on the pedestrian walkway route starting at 10:00 am at the Independence Ave. S.E. entrance (across from the Rayburn Building). They will head north across the (east) front side of the Capitol, and by 10:30 am they will be on the (west) back side of the Capitol moving back in the direction of the Independence Ave S.E. entrance. This march, for the invisible sick who cannot attend in person, will raise awareness with music, signs and voices telling their stories. The marchers will then get into cabs to proceed to the front side of the White House on Pennsylvania Ave from 11:15 am to 12:00 pm.  They again will be marching back and forth on the sidewalk and in the street raising awareness about ME.

HHS has neglected these patients for the past three decades by withholding proper funding and excluding education about the disease in the curriculum of U.S. medical schools. This has resulted in limited scientific advances and lack of knowledge about the illness by physicians nationwide. The patients, some of them so severely affected as to render them housebound and unable to care for themselves, have been unable to loudly speak out...until now!

A grassroots organization,, has been formed to fill the needs of these severely affected patients. has raised funds and organized this demonstration in DC to raise awareness about the illness and to urge HHS to properly address this severe group of patients and to ask for NIH funding to be raised to a level of $250 million a year to bring ME up to par with other similarly burdened diseases.

Colleen Steckel, MEAdvocacy volunteer, e-mail: [email protected]       

Phone: (937)265-5246




Showing 13 reactions

  • Pat Mayer
    commented 2015-04-29 16:55:07 -0400
    Can’t thank you enough for doing exactly what I would be doing if I could. Thank you, thank you, thank you.
  • Bon Marie Munier
    commented 2015-04-28 20:32:09 -0400
  • Rob Wijbenga
    commented 2015-04-28 09:52:58 -0400
    superb. Message is spreading like wildfire in Holland. Good luck and fair weather, all of you heroes!
  • Tania Roullet
    commented 2015-04-28 05:02:21 -0400
    Fantastic action to finally raise awareness !
    Sending my support from France, where this type of action is also needed.
  • Jo Best
    commented 2015-04-28 04:22:57 -0400
    Heartfelt thanks to the well supporters and the walking wounded with M.E. taking action on behalf of those unable to leave their beds or homes to march in person.
  • Lisa Kishkon
    commented 2015-04-27 22:43:35 -0400
    Good Luck tomorrow and thank you so much for doing this on our behalf.
    29 year warrior!
  • Alisa Simmons-Snapp
    commented 2015-04-27 21:07:39 -0400
    Thank you to the brilliant creators of ME Advocacy! Also, I’m grateful to all who are working on this march.
  • Toni Panzuto
    commented 2015-04-27 13:58:22 -0400
    Thank you so much to all of the advocates and supporters for undertaking this action. All the very best for tomorrow’s event. In the words of Margaret Mead: " Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has". In solidarity
  • Deborah Sephton
    commented 2015-04-27 13:23:53 -0400
    A huge thank you to all the advocates taking part on behalf of all of us that are unable to due to this life changing debilitating illness.
  • Eddy Keuninckx
    commented 2015-04-27 05:04:18 -0400
  • Shirley Powers
    commented 2015-04-26 18:04:17 -0400
    Thank you to those participating! Hopefully we get increased awareness that is so badly needed for long absent funding.
  • Sally Burch
    commented 2015-04-26 16:51:40 -0400
    Best wishes with this action….
  • Wendy Boutilier
    commented 2015-04-26 16:44:09 -0400
    I am hopeful that this will create a large enough ripple to catch the attention we so badly need. A huge thank you to all the advocates involved.