It’s Time to “Act Up for ME Funding”



What:  A marching demonstration to let Congress know; “We Want Real Funding for ME Now!

Where:  Washington D.C., around the Capitol and the White House.

When:  Next week (week of April 27th) while the U.S. Senate and House Appropriations Committees are holding hearings on proposals for HHS/NIH Budget for 2016.

Why:   ME patients need a visible presence in Washington D.C.  Marching on the Mall is an important tool to use to “Act Up” and demand funding for ME.

How:  Make a donation and help fund this April Demonstration, bringing a visible presence to Washington D.C. on behalf of ME patients.

Donations up to a total of $1000 will be matched!

Deadline:  Friday April 24th, 11:59 p.m. EDT


March 2015 Trial Demonstration Completed

On Thursday March 19th, 2015, conducted a trial run demonstration using able bodied college student “stand-ins” to represent ME patients in Washington D.C.  They each wore pictures of the ME patients they were representing. Despite the rain, the trial run was very successful.  The band of ME patient representatives was quite a sight to see around the Capitol.  They certainly inspired people to learn more about ME and the need for more congressional funding.  The demonstrators “danced in the rain” on the lawn of the Capitol, which brought many interested onlookers out to the balcony from the Capitol to see what was going on.  Click Here for Map of Capital Route  

Check out photos and video from the demonstration in March.  

This trial demonstration was generously financed through a single member’s donation.  While we wish we had unlimited resources to cover all advocacy expenses, we are not able to sustain such activities without your help.

Upcoming April “Act Up For ME Funding” Demonstration

How you can make this event happen:

  1. Donate funds towards the demonstration
  2. Volunteer use of your photo, name, and short biography
  3. Share the information on Facebook and Twitter


As you may be aware, due to the severe disabling nature of this disease, it is impossible for most ME patients to leave their beds and homes, much less travel to Washington D.C. and demonstrate.

Your donation will go towards the cost of hiring representatives to “stand in” for ME patients, and the cost of materials for the signs that will be carried and worn by the “patient stand-ins.” To help keep our costs for this demonstration down, the travel expenses for this demonstration have been donated by one of our members, who will be leading this demonstration.

We are also reducing labor costs by having our volunteers hand-make our signs.  Yes, this saves a lot of money and adds to our grassroots message.  We are not a slick and polished organization, but we have the heart and soul of ME patients.  Our grassroots advocacy communicates to Congress the profound need of ME patients.  Support us and we will make sure that your voice gets heard on the “Mall.”

For this demonstration, we plan to use approximately 18 demonstrators to protest for funding on the streets of Washington D.C.  The cost of funding a “stand in” patient representative with signage is approximately $65.00 per person.  We will need to raise an approximate total of $1200.  

If you are interested in the chance to be the “face” of an ME patient as a photo worn on the front or the back of one of the demonstrators, you will need to submit the following:

  1. Jpg photo
  2. Short bio
  3. Your permission to use your photo, your name (first names are allowable if you are not comfortable using your full name) and your bio.  

It is our plan that selected bios will be read on camera.


Colleen S --

M.E. sufferer with sudden onset in August of 1989 at age 29.

I am unable to work and mostly homebound.  My ability to perform normal daily activities is limited and post exertion symptoms mean I am unable to work or engage in normal activities of daily living. I require someone pushing me in a wheelchair to enjoy any outings. Immune dysfunction means I am vulnerable in crowds. Multiple Chemical Sensitivity means my health is at risk anywhere there might be chemicals or perfume like shopping centers or crowds.  Food sensitivities caused by this illness mean I must live on a very strict diet.

How to Donate

Please send in your donations for the demonstration here.  An ME blue wristband will be sent to each person donating funds toward this demonstration.

How to Submit Photos and Bios

Your jpg photo, bio and permission of use can be e-mailed here. ([email protected])

 Type "DC Demonstration" in subject line.

Possible Future May 12th Demonstration in Washington D.C.

If ME patients and their supporters like the idea of our “Act Up for ME Funding” Demonstration.  We will consider doing a similar demonstration on May 12th.  But as we said, to make this happen, we need your support.

Showing 1 reaction

  • Rose Sam
    commented 2015-04-24 20:44:33 -0400
    I have 3 kids 2 with huntingtons my the other one has ME. in GOD’S name do something.