M.E. is a short animation by Alexandra Hohner using interviews with a young man who developed ME/CFS following a giardia infection. She says ” The experiment is based on the idea to create a simulation of Olly’s photophobia (sensitivity to light)”
M.E. an animation by Alexander Hohner, using interviews with Olly.
Transcript
Wake up buzzer.
It’s a.. kind of … potentially a long term illness that is not what people tend to think it is … and I think because of the use of the term chronic fatigue as well as ME, people think about fatigue and they think about if they go to the gym or if they have a day at work and afterwards they’re feeling tired and that’s like fatigue and it just isn’t the same thing at all. You can’t do physical exercise because you haven’t got the energy, or if you do do it you feel terrible the next day. It’s the mental side of it, what people call the brain fog. I became very sensitive to light and sound and I couldn’t deal with bright lights at all. I could never realise that a noise could be.. could basically feel painful!
One of the last times I tried to go out and I tried to go to the theatre with my friend, and I thought OK, this might be manageable. I’ll get transport there and back, I’ll get lifts there and back and all I’ve got to do is sit down for an hour and a half right, and I spend most of my time sat down anyway, so how hard can it be… I like going to the theatre, this will be FINE and… by the time we got to the end of that hour and a half I was… absolutely ‘out of it.’
“It’s estimated around 200,000 people in the UK have M.E.
but the number may vary
because of issues around diagnostic criteria”
I was watching the Tour de France yesterday and they were talking about the fact that the longer and longer you go when you’re riding, racing, bike racing, it’s like you do the same amount of work with a smaller and smaller engine because your body is getting more and more fatigued, and thinking about it that’s quite a good analogy because it’s like, I can’t keep talking to you because, I can’t get the words out, I can’t think of the right words. When you have that sort of a crash. It’s like your IQ being… 30 points being knocked off your IQ. Basically you go stupid and emotional.
I can tell if it’s coming. There’s a point where it switches over… to still feel like I’ve got some energy, but basically it’s switched over to adrenalin and it’s kind of rushy energy. Because I’ve actually already done too much and it is time to stop. And to begin with I would be like – “ Oh wow, I feel energised, I can keep going for a while… this is great….” And I didn’t realise that switch had kind of happened. When I get really exhausted I can’t sleep, which is ironic. I would feel spaced out and wired, kind of like high afterwards… It’s just crazy… it’s just crazy. The idea of it’s just…….. Insane! Laughs.