It is with much sadness that I write of the passing of Emily Collingridge -- a brave young woman with severe ME who died on Sunday from complications of the disease. She was 30 years old.
Emily, who was stricken with ME at the age of six (and had been mostly bedridden since her teens), still managed to accomplish much in her short life. She authored the book Severe ME/CFS: A Guide to Living. She also worked as a volunteer advocate for the Association for Young People with ME (AYME) as well as a family support charity called Home-Start. She managed to do all of these things from her bed, but was unable to continue when she suffered a setback in 2005.
Emily graciously allowed me to include her story and photos in my October 2011 testimony to the (ME)/CFS Advisory Committee. In that testimony, I borrowed from Emily's own appeal to tell her story:
[Emily] writes: "I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison."
Emily's daily life involves medicine/fluid being pumped into her stomach through a tube, various injections, diaper changes, transient paralysis and pain so severe she sometimes hallucinates.
[She states]: "This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change."
Although Emily and I only corresponded a few times in the last many months, it was enough for me to have considered her a friend. In the brief time that I knew her, I found myself repeatedly touched by her kind nature and her strong desire to help others, even when she herself was so terribly ill. Most of all, I was inspired by her strength, spirit and determination -- all of which she continued to demonstrate to the very end.
Today, I feel both saddened and angered. Emily was so young when she fell ill, and so young when she died. She had such potential; such vitality and desire for life. She should not have suffered as she did. She should not have had to die. We are repeatedly told by government health agencies that there is not enough money to increase funding for research; that things take time and we need to be patient and wait. But some of us have waited an entire lifetime. And for some, like Emily, it is already too late.
I hope that Emily's death will not be in vain. I hope that, in hearing her story, people will start to understand just how devastating this illness truly is, how dreadfully sick we are, and how desperately we need help.
My heartfelt sympathies to Emily's family and friends. She will be missed by so many.
For more about Emily, please check out the following links: