What's in a Name?

Some days my brain is mush.
Sometimes that's thanks to being crashed from M.E.
Other days, my brain is just mush.
No excuses!

Like today.
I discovered that the plastic surface of the buttons on the door of my 5 year old microwave was getting very blistered and bubbly. When I investigated more closely, the penny finally dropped. After only five years! It's just one of those transparent plastic protectors manufacturers put over screens, meant to be peeled off immediately! Here I was, 5 years later, with the thing still in place.

Now although I bought the micro at around the same time as I was floored by my latest major bout of M.E. five years ago, I can't blame that "Duhhh!" moment on M.E. brain fog.

I can't blame comical moments like that on anything else but my slightly scatty, away with the fairies personality. I've never been that quick to grasp the plot, even with various letters after my name!


But I'm struggling now with a new "development" in the science behind M.E.  Or rather the language used to provide more baffling acronyms. It's enough to induce "brain fog" in the fittest!

Circa 2008, a study claimed a link between M.E., prostate cancer and related illness, and XMRV (Xenotrophic Murine virus-Related Virus). Yes - virus-related virus. There's a good start towards clarity, eh?


Now, in March 2011, I see on various blogs, M.E. chat groups and elsewhere on the web, XMRV is going to have a name change, to HGRV (Human Gamma Retrovirus). For resultant conditions like M.E. with possible viral links, the snappy new acronym will be HGRAD (Human Gamma Retrovirus Associated Disease). One reason seems to be "Murine" refers to mice, so the new name focusses back on the humans affected, not visions of Mickey Mouse and Ratatouille!


Should we break out the champagne? (I might, if only M.E. had not also made me allergic to alcohol!).  Wait! I've only recently got one friend's eyes to light up with understanding that my Type 1 diabetes and my M.E. may well both be understood one day to be autoimmune diseases, quite distinct from Type 2 diabetes and a spot of vague "T.A.T.T." (Tired All The Time).

Now we have yet more letters to juggle with! While for the general public and for many G.P.s,  understanding and acceptance of the crippling, frustrating disease and the umbrella of illnesses that may or may not be related, is still a lottery dependent on personal encounters with genuine sufferers or the cynical lies propagated by the media and talking heads.


While the war of words goes on between the labels M.E. (Myalgic Encephalomyelitis, or as some insist, Myalgic Encephalopathy), C.F.S. (the much vaguer Chronic Fatigue Syndrome, which IMHO fails completely to describe 3/4 of the disabling symptoms and coddles folk into the notion that a bit of backbone would cure those contemptible malingerers!) and P.V.F.S (Post Viral Fatigue Syndrome, which unlike M.E. seems to harbour hope of a quick return to full functioning), we now find more riddling initials to addle our foggy brains!


I have so many friends at the moment struggling with a wide variety of illnesses which, like me, they simply refuse to be defined by or beaten by.


The labels, the letters may come and go. But we're here, guys, and we're not going to be filed away under T.B.A.

Keep smiling and trusting that you are certainly not alone.