The ME/CFS World - What's changed in 20 years?

I became ill at ten years old, back in 1993, nearly two decades ago. I come down with a mystery virus, saw lots of doctors, went for lots of blood tests and was told there's nothing wrong with me. I was continually asked do I like school? Am I being bullied? The answer to that was I loved school and had lots of friends, it made no sense for me to "pretend" to be ill. I was missing out on so much and hated it. All I wanted was to be well.

Nobody understood except for my Mum. Family, friends and my school didn't understand why I couldn't "just" do things, like go to school, go out, do the things that everyone else my age was doing. They implied I was being lazy and difficult. It hurt so very much, their silent criticism, how easily they forgot who I really was, who I used to be. The happy, bubbly, outgoing little girl.

I spent two years not knowing why I was so ill, being made to feel like I was making it up or pretending, until eventually my family found a specialist who I saw privately. Finally I got a diagnosis of ME. We found support groups and other sufferers and realised we weren't alone, other people were going through the exact same thing.

We had to fight to educate everybody around me, including the doctors, to teach them about my illness, my symptoms and the things I could and couldn't do. We became the experts and we had to fight against this stupid stigma that it was an illness that was all in the mind.

I believed that twenty years on things would be getting better; but I'm furious and devastated that they aren't. This morning I heard of a little girl who had just been diagnosed with ME and her experience is exactly like mine was. No diagnosis, doctor's didn't believe or understand, no tests, no treatments, no support from the school. It makes me so angry and so very sad that in twenty years things are still the same. When are things going to change, because it really is about time it did. People are suffering and until the health service starts to take it seriously and puts real money into bio-medical research, then millions of people around the world are going to have to deal with the same horrific situations. This isn't Ground-hog Day, this is people's lives.