Monday, April 8, 2013

HAWMC Day 8: The elephant in the room.

If myalgic encephalomyelitis was an animal, it would be, without a doubt an elephant in the room.

The elephant in the room specie is larger than life yet very seldom recognized as such. It is commonly found in government offices and where funding decisions are made in each country.

Elephants in the room are unfortunately not endangered species and its thriving is due to the lack of knowledge from decision makers, lack of research funding, bad decisions from leading groups like the CDC, diluting the disease case definition and the neglect from the medical field, amongst other things.

You'd think that elephants in the room are big enough to be seen and be loud enough to be heard. Perhaps the people sitting in board rooms and parliaments are blind and hard of hearing. Occasionally one of them will venture their hands out and feel a body part of the elephants in the room, and think: Oh yeah. I know! Fatigue is like when you come back after a hard day at work and then you got to take care of dinner, laundry baths and bedtime for the kids. Then another one would touch another body part and think- oh I know what it is. This is an overweight creature- a little diet and exercise will cure them of what ails. And then another one will say: there is nothing wrong with this animal. Maybe it needs a little therapy.

The uninitiated needs to take a look at the whole beast. Most people with chronic diseases, many of them very debilitating, are invisible to the eye. Myalgic Encephalomyelitis also suffers with the fact that there are no biomarkers for the disease and that most physicians still don't know how to diagnose it, but then a handful of chronic diseases are based on clinical expertise, namely Parkinson's and rheumatoid arthritis. These 2 diseases have or can have visible signs which is not the case for ME.

It's now been just shy of 30 years that there has been epidemics of ME around the world. The elephants are still in the rooms of governments who refuse to say there has been gross incompetence in recognizing and studying these epidemics. Since then, the elephants have been accumulating like crazy, so much that it's hard to breathe and yet, the people in suit in our governments are still congratulating themselves for giant leaps for HIV. What about the rest of us?

I want to think that we'd be in a different world if ME was handled how HIV has been handled over the last 30 years.

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