One of the key problems for sufferers of Myalgic Encephalomyelitis is that we are ignored. Our illness works against our ability to be seen and heard. ME is a difficult enough condition to try to explain to people, but trying to do it whilst exhausted and confused makes the task near impossible. Making public displays and being seen and heard in the community requires energy and many sufferers are unable to tolerate the noise and brightness that would be required to do something as simple as be present at a demonstration.
There was a time when I thought that all we needed was to have someone famous develop ME. Not that I’d wish it on anyone, but it seems that once a celebrity develops an illness the media are all over it. I realised after a while that it wouldn’t matter. There have been several celebrities diagnosed with ME including one of my idols, Michael Crawford. There’s plenty of interest in stories about these people but how good a story can you really make about someone lying in a dark room, without the energy to talk to you? We can’t fight our own battle, and the medical and governmental personnel that decided years ago to back the wrong treatment can shout louder and be seen. All we can do is rely on others to fight our battle for us. The people who have lived with the illness and managed to recover, the people who have cared or are still caring for severely afflicted ME sufferers or the few medical professionals that continue to fight for a cure.
Recently an hour long documentary film was produced in the UK by Natalie Boulton and Josh Biggs – the mother and brother of a severe ME sufferer. It has been assisted by many people giving their time and skills voluntarily to help us be heard.
You can find their official site here. Please help us be heard.