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Article: ..ME since I was eight – and the way I'm treated hasn't changed in 30 years


How do you write about living with an illness for almost 30 years without sounding like you’re whining? It’s a tricky job, and despite three decades of experience with it I’m still not confident in speaking of my medical condition. I much prefer to bat away the issue of my health and use smoke and mirrors to mask my reality.

In the late 1980s, when I was aged just eight, I was given the diagnosis of ME – Myalgic Encephalomyelitis. After years of (literally) painstaking tests, the doctors informed my mother with the comment, “There, happy now?”

Rest of article at http://www.independent.co.uk/voices...eated-hasnt-changed-in-30-years-a7026386.html


Alone & Wandering
Zogor-Ndreaj, Shkodër, Albania
Know how this person feels.
Had it since I was 4-5

I think it's worse never having really experienced life before ME. The past two decades ive been dreaming of what it must be like to not have this.

The patients that have become ill during middle age, or later, are so very lucky. Even though it might not seem it. They've got 40 years of memories of life. Whilst there's others like me who is still waiting to begin.


Senior Member
Younger onset is rare although there is one in my Axenfeld Riegers group I think,although they don't know it,maybe best to be untainted by ME/cfs if they want to get a better answer