May 12th was an unusually hot day. But that did not deter seventeen demonstrators - patients, friends, and supporters - from gathering in front of the Federal Building on Seventh Street in San Francisco, where the regional HHS office is headquartered.
Nobody needed to be told what to do. The entire group acted in concert, with a smooth efficiency that belied the fact that most of us were strangers to one another.
After a short introductory speech, six of the demonstrators lined up behind the wheelchairs and read aloud the obituaries of those whose portraits were displayed.
I explained why the IOM contract should be canceled, and gave her the experts' letter as well as a fact sheet with important information about ME/CFS, a request for legislative action to increase funding for scientific research, and a statement that the misleading name “chronic fatigue syndrome” be replaced with Myalgic Encephalomyelitis.
Our message was loud and clear: "There are a million of us. We are dying of this disease. We've had 30 years of neglect from HHS, we are citizens, and we vote. It's time our representatives did their jobs and represented us!"
This may not have been the largest, but it was one of the most inspiring political events I have ever attended.
I want to give my profound thanks to everyone who came, as well as to all those who couldn't attend but expressed their support through donations, or by simply cheering us on. It buoyed us to know that you were all there in spirit.
Washington, DC - Capitol Building
On the other side of the country, Mary Dimmock was busy setting up a May 12 demonstration at the Capitol Building. This year marks the 30-year anniversary of the Incline Village outbreak that saddled our community with the name "chronic fatigue syndrome," so the theme of the demonstration was 30 Years of Neglect.
The Banner provides a moving testament to the toll this disease takes on the people it strikes. The demonstrators also displayed a banner with the portraits and obituaries of people who have died of ME/CFS.
Two reporters, one from Televisa's Washington office and one from Medill News Service, came by to cover the event, and to arrange an interview with Mary. As Mary said, "Two leads is a very good thing."
Giving even one person such a valuable piece of information was worth it."