May 12 Release of "Forgotten Plague" Theatrical Trailer
Ryan Prior and Nicole Castillo, co-producers of the upcoming ME documentary “Forgotten Plague,” released its first theatrical trailer. The release was timed for May 12th, 2015 to spotlight and honor International ME Awareness Day events. One of our own advocacy members, Susan Kreutzer, makes a quick cameo appearance in the trailer. Can't wait for when the documentary will be released this summer. Visit the Forgotten Plague website for more information.
MEadvocacy.org Chomps Chillies for ME
Our Story:
We are a group of patients and advocates who volunteer our time to raise awareness for Myalgic Encephalomyelitis. Due to the severity of our illness, our activities, writings and meetings take place from our homes and beds.
Our current focus is to raise awareness to ask Congress to increase funding into research for severe ME patients, use the term Myalgic Encephalomyelitis (instead of CFS) along with more accurate criteria that is recommended and supported by ME experts, advocates, and patients.
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Want To Get $250 million for ME? Let's Reach Congress Now!
At the Capitol
The month of April has been a very busy, yet rewarding, time for the advocate advisory group at MEadvocacy.org. We have reported to you about our “boots on the ground” adventure with our “Act Up for ME Demonstration” at the Capitol and the White House.
Despite some initial snags and thanks to our intrepid, determined advocate, Susan Kreutzer, the march/walk on Washington, facilitated by George Washington University students wearing pictures of ME patients, was a major achievement.
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ME Patients Visible at The Capitol: Pictures and Videos
“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.
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May 12th Awareness Events 2015
(List courtesy of May12th.org)
May 12th has been designated as International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) since 1992. The diseases included in CIND include Myalgic Encephalomyelitis (ME) Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome(GWS) and Multiple Chemical Sensitivity (MCS).
This document will be used to record events planned for 2015. If you have an event to add, please either email [email protected] or post the details of your event on https://www.facebook.com/events/1687966454755997/ . For more information about May 12th International Awareness Day please see www.may12th.org or www.facebook.com/may12th.awareness. There is also a list being maintained HERE.
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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.
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Act Up for M.E. - Boots On The Ground In DC
PRESS RELEASE - IMMEDIATE
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, MEadvocacy.org, has been formed to fill the needs of these severely affected patients. MEadvocacy.org 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.
Contact: MEadvocacy.org Colleen Steckel, MEAdvocacy volunteer, e-mail: [email protected]
Phone: (937)265-5246
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.
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Missed the Hidden Heroes Live Show on ME?
MEadvocacy.org spokesperson, Anne Keith, appeared yesterday on the Hidden Hidden Heroes live talk show with Arielle and Aarin discussing severe myalgic encephalomyelitis (ME).
If you missed the live event, you may watch the archived show at the following link:
https://www.youtube.com/watch?v=2rWHEPvKwSQ#t=11
(edited to change the link to the Youtube source video, for better performance)
Hidden Heroes Google + Talk Show Wednesday March 25, 2:30pm PT
MEadvocacy.org spokesperson, Anne Keith, will be discussing ME on the Hidden Heroes live talk show with Arielle and Aarin. The show is a Google+ Hangouts On Air live broadcast, which will air Wednesday March 25, at 5:30pm Eastern (4:30pm Central, 3:30pm Mountain, 2:30pm Pacific).
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