My name is Naomi Whittingham and I live in the UK. At the beginning of 1990, a couple of months before my 13th birthday, I fell ill with ME. My deterioration was rapid and within a short time I was very severely affected. Completely paralysed and in agonising pain, my family and GP feared that I would die at any moment. Despite the obvious severity of my illness, I experienced disbelief, hostility and abuse from many medical professionals. The damage of this treatment was to prove more profound than the illness itself. My story is told in more detail elsewhere on this site.
Three decades on, I remain very ill. I have, however, made significant progress from my worst years, and in this respect can be classed as one of the fortunate ones. Over the last ten years I have directed my increasing health towards raising awareness of severe ME, in the hope of preventing others from suffering some of the mistreatment that I did.
Since childhood, writing has been a fundamental part of who I am. In more recent years I have used it as a means of making sense of what has happened to me, and as a tool for reaching out to the wider world. I have been published in the mainstream media on several occasions. My first article, in The Daily Telegraph in 2013, came at a time when severe ME was almost unheard of in the national press. I wrote again for the Telegraph the following year, and in 2016 for OpenDemocracy. I have also appeared in an award-winning documentary, spoken on several occasions on BBC local radio, and been involved in training for junior doctors. The main purpose of this site is to bring all my advocacy work together in one place, as well as providing a platform for further writing.
There are other ME advocates whose knowledge of research and politics is far superior to my own. My ongoing limitations prevent me from reading anywhere near as extensively as I would wish to, and I readily acknowledge that I am learning all the time. Elsewhere I have shared links to people and organisations whose knowledge fills the gaps in my own.