CFS Patient Advocate:
In the general give and take of the struggle for recognition of ME/CFS, these severely ill patients are forgotten, or left behind in their frozen silence, in their darkened room.
They have no voice, doctors don't (or can't) see them, and consequently very few people - providers, doctors like de Meirlier (Are there doctors "like" de Meirleir?) - know and have seen their story. Obviously these patients do not show up at conferences or in doctor's offices. They do show up in Emergency rooms, where they are destroyed by the ignorant, crass doctors and nurses.
In the meantime these patients are mute, and on their own - in the most primitive of medical circumstances.
A few individuals have made an attempt to engage this "removal from life" - to "take a look". The most successful is Natalie Boulton who compiled, edited and designed the book "Lost Voices, from a hidden illness" published in 2008 by InvestinME, (the second edition published in 2010). (I have written about this truly outstanding InvestinME organization here and elsewhere on my blog.)
This frightening and uplifting book is everything you want to know and more. It has ... Read more>>