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.
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.
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.
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