#MEAction co-founder Jennifer Brea at the #MillionsMissing protest in Washington, DC, May 25, 2016
“Okay awesome. Wow this is amazing. As soon as I pulled up to the square here I just started sobbing because I have been waiting in some sense ever since I got sick for this moment to be together here today with so many people that I have only ever met online.
My story is the story of millions. I was young. I was well. And I had so many dreams. Of what I wanted to do in the world. Of what I thought my life could be. And then one day I got what I thought was the flu and I was never the same. I saw doctor after doctor and there was no help, no diagnosis. Most days I could barely lift my head from a pillow. I had to crawl to get to the bathroom. And I was told that I wasn’t really sick. That my experience was impossible. That my body was body was falling apart because of a distant trauma that I could not recall. They told me that it was all in my head.
We are frail and we are mortal and sometimes life is unfair. I know that, and I’m not saying that I deserved to live a long and full life. But when you get sick like I did you expect that there will be help. That even if there is no treatment there will be care. I began avoiding doctors at all costs. I began to fear what might happen if I collapsed in public and someone called an ambulance.
We need first and foremost for all of us to agree–the Secretary of Health [and Human Services], the NIH, the FDA, the CDC, the medical profession, the scientific community, the media, the public–that all of our institutions that are meant to care for our health have failed us. That we are in a crisis of our own making. And that addressing the millions of lives lost due to myalgic encephalomyelitis is urgent. That our country cannot afford this scale of useless suffering any longer. And then when we have done that we need science, of a quality, and on a scale that we have never had. And I will keep coming back to this place over and over and over again until that day comes.
When I first got sick I was alone. I thought that I had a rare disease, and then I went online and I found all of you. The millions who are missing. There are so many people who could not be here today. I honor them. I honor the infant that I was in 1984, the year of the Incline Village Outbreak. I honor all those who have lost so much in the last thirty plus years. I vow that I will fight so that no child born today will one day grow up to get this disease; will have to grow up in the world as it is now. Today is proof that we can come together, and we can speak with a louder voice than we ever have. We have spoken in Melbourne, in London, in Washington, in Boston, in Dallas, in San Francisco, in Seattle and all around the world. So let’s keep using that voice over and over and over again — until we can’t speak any longer. Today is only the beginning.”
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the