A few years after getting ill, I discovered that I can write interesting stories about things that happen inside or close to my home: for instance, about birds or cats visiting our garden (preferably not at the same time), books, music, or even what we had for dinner. This time it is about my shoes, my empty shoes. Who needs shoes while lying on the sofa, anyway?
And that is exactly the point of the campaign #MillionsMissing. A pair of empty shoes is a metaphor for all the things people with Myalgic Encephalomyelitis (M.E.) are missing… missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. On Wednesday, May 25, ME/CFS patients, caregivers and advocates in twelve locations around the world gathered for a global day of action to demand research, treatment and an end to the stigma of ME. And on September 27, it is time for round two for this campaign to get even more attention. Shoes from people with M.E. will fill the pavement as a silent protest.
The empty shoes are, I think, a brilliant symbol of the freedom we lack. It makes me think about the things I miss out on, and those are – to be honest – things I don’t want to think about too often. Missing out on having a job, doing my own grocery shopping, interacting with people, having dinner with my partner, visiting a museum or art centre, is challenging. I think about all those places my shoes and I went. What I’m missing is that freedom that I had once, a decade ago.
On September 27, in the Netherlands, the #MillionsMissing campaign will be located in The Hague, the political centre of our country. I can only hope that a high profile politician — a billionaire would be nice as well! — is touched by this gesture and understands the need for research. Someone who is willing to make an effort and, through this campaign and my empty shoes, appreciate their own shoes, appreciate their shoes for not being empty, and appreciate their own freedom.
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