ME Patients Visible at The Capitol: Pictures and Videos

 

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“I don't need a cloak to become invisible.”J.K. Rowling, Harry Potter and the Sorcerer's Stone

ME patients don’t need a cloak to become invisible either. The devastation of this disease is not only the physical misery, it is the loneliness, the inability to be part of society. To compound this agony, the disease is so well “hidden” that many people are disbelieving of it.  Family and friends want us to just snap out of it. Doctors want to give us antidepressants. HHS wants to trivialize the name and marginalize the criteria so that they can continue with their lack of funding and flawed research, thinking that no one will care.

Many advocates and patients, including MEadvocacy.org are saying NO MORE! 

“Nothing strengthens authority so much as silence.”Leonardo da Vinci

Our group’s aim to raise awareness about these issues gave us the impetus to arrange some type of demonstration in DC. Most severe ME patients are never seen nor heard. We had to find a way for them to have the ability to use their “outside voices”. We knew that most ME patients are too ill and or impoverished to travel and to walk while holding signs. We had to think outside of the box. We needed healthy volunteers; and that’s how the idea of college students standing in for the patients developed.

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When we presented the idea to the patient community, it was met with great enthusiasm. Patients from all over the world liked the possibility of having a voice and face at the Capitol. They were uplifted by the fact that for two hours, they would be visible to the world, showing the devastation of this “hidden plague” and the neglect by our government.

The timing of the demonstration was set to coincide with the congressional appropriations hearings. This is when congress decides the NIH budget for the next fiscal year. 

Our intrepid advocate, Susan Kreutzer, kindly volunteered to be our “boots on the ground” in Washington, DC. As we reported last week, she was met with many snags, at every corner, yet forged ahead unfazed.  Susan, enthusiastically led her flock of students, garbed with blue caps, emblazoned with the letters ME. The demonstrators were a true sight to be seen, with images of patients around their fronts and backs, holding signs calling out the U.S. government for their neglect and lack of funding. The demonstrators were a very visible group around the Capitol and the White House.  

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By the end of the day, the demonstrators felt empathy for the patients they represented and conveyed that feeling to others while distributing the fact sheets we had prepared. This was not the biggest demonstration, but it had a large heart. It was a conspicuous enough contingent to make people stop and look, read the signs, take a fact sheet and ask questions.

This was the success of the mission. 

Video of the presentation of patients.

https://youtu.be/gpmQRk4R44w  -  Due to the drumsounds in the background, it is a bit hard to hear.  Please press CC for closed captioning

Video of a compilation of pictures.

https://youtu.be/3ZfLrHHBAbU

Biographies of patients:

The initial intent was to video the reading of every biography in full, but there was not enough time. So, the demonstrators needed to summarize. Here, we have attached full biographies that the demonstrators wore.

 Preparations for the demonstration

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Showing 6 reactions

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  • commented 2015-05-11 18:04:57 -0400
    Thank you, Deborah. The link is fixed.
  • commented 2015-05-11 16:50:44 -0400
    hi – great job!

    i think there’s a bad link – the “Here” on “Biogrophies of patients” took me to amazon?
  • commented 2015-05-06 22:24:20 -0400
    Or wha about a giant picture of a severl ill patient with the words “our government thinks its more important to put hair back on mens heads then get this (man/woman) better” I think adisturbing photo of a severely ill patient would have a lot of impact
  • commented 2015-05-06 22:19:38 -0400
    I totally appreciate this.My one critique is it is better to hold one giant banner with one message as opposed to small posters with several different messages. In the future I would suggest choosing one slogan and painting it on a humongous banner and holding that up. Send out one message loud and clear. I would personaly write “Our government cares more about putting hair back on mens heads than disabled people back to work.” Then under that put “18 million dollars spent on male pattern baldness, 5 million on me/cfs”
  • commented 2015-05-05 19:35:12 -0400
    Thank you each and everyone!
    Please check out the Post by Fie. I do not know who he/she is but I checked out the link to CNN posted and think it may be an excellent way to demonstrate.
  • commented 2015-05-05 13:13:48 -0400
    well done

    and perhaps an idea for next time?? http://edition.cnn.com/2015/04/12/europe/spain-hologram-protest/