ABOUT ME/CFS

For those who don't know, I have the misfortune of suffering from myalgic encephalopathy and chronic fatigue, and there are a couple of links below which give a little insight into this very misunderstood chronic illness which never seems to leave its victim once it has struck.

I retired early at the age of 58 (I think) because I realised to my horror back then that I couldn't any longer work as a self-employed locum medical secretary with the high levels of integrity I had always aspired to. Since that time I have become weaker physically too (not that I ever regained my strength and stamina to the levels they had been before I was struck down in 1997), and for the last few years I have been disabled and relegated to the brigade of the "Greys on Scooters" for getting around outside or in shopping precincts!

But you see me on my scooter on my profile page, and you see that I'm happy on it! Yes indeedie! If I could, I'd have a racer!!! I love those times out in the country on my larger vehicle, Richard on his bicycle, just meandering along in the fresh air and beautiful scenery around us. Memories like those in the middle of winter are like glimpses of heaven, and give me fresh hope for a repeat of those times again during this coming year.




Not enough is known about this horrible illness. Many people are bed-ridden with it, even having to live in darkness because the light triggers sensory overload. Carers are sent out to do their every-day chores, and there are widely reported cases of abuse from the ones who treat this particular clientèle with contempt, telling them they are lazy and good for nothing, and that they should "pull their socks up" and darn well get on with life! How galling to be told this when that's the one thing such a person wishes more than anything else that they could do! (Thankfully my husband is my carer, and he loves me to death and knows only too well what's involved from both sides of the coin!)

The cause of the illness has sparked off many a heated debate, both in medical research, and amongst the actual victims of the illness. It is now proving to be of viral origin, whereby a previously contracted virus for any number of illnesses (no particular one) then remains dormant in the body's system until it is triggered at a later stage by some event in life, usually involving high stress and emotional turmoil, when it comes to life again in a mutated form, destroying certain functions of some of the genes of the body. It chiefly seems to affect the hypothalamus, which although the smallest gland in the brain, happens to be the most important one, and is responsible for interpreting signals from the body, mind and environment. In ME, these signals become misinterpreted, and in turn the wrong chemical responses are sent out via the pituitary gland, causing a long-since drained fight and flight system to go into perpetual overload. This is what leaves the patient exhausted.

Unfortunately patients with this illness are subjected to a lot of misunderstanding, as for a long time it was "assumed" to be a psychosomatic illness that didn't really exist. It was only through the unending efforts of ME sufferers themselves, together with a handful of doctors that further research was instigated to investigate physical causes.

Here are a couple of links for anyone who would like to know more about ME/CFS (from which I suffer)...

The ME Association and ME Research

These sites should help to clear up any preconceived misconceptions about this very debilitating illness, and I'm thankful that I'm not as badly affected as many others are, although wouldn't it be just wonderful if a breakthrough could be made as to its aetiology leading to an actual cure for us all!!