This web site has been created for people who have or know someone who has the debilitating illness M.E. (Myalgic Encephalomyelitis). Also known as C.F.S. (Chronic Fatigue Syndrome).
"I know how you must be feeling" is a thing you hear quite often if you have M.E. it's said with the best of intentions and with the greatest sympathy. But please with the best will in all the world you will never know exactly what it is like to have M.E. Or at leat I hope you will never know. But through this site I hope to at least help you understand it.
You may have M.E./C.F.S. (I will from this point use the term M.E. all through this site) or you may know someone who has M.E. but in all probability you will know very little about it. You are not alone, it's only when you are diagnosed as having this "thing" that is M.E. that you take it upon yourself to go and find out what it actually is.
There are lots of story's as to what M.E. is. While a lot of people think that all having M.E. means is that you sleep a lot (true in some cases but not the majority) others think that it's all in the head and just a malingerers illness. You are not alone if you have this opinion, I myself have come across so called "specialists" in the medical profession with this very same opinion. Thankfully they are in the minority, and the majority of Dr's and specialist etc: I have had the need to see, have in the main been very supportive
Whilst I use the term M.E. please remember that C.F.S. is classed as the same thing, the difference being that I along with many others refuse to use the term C.F.S. as we feel it belittles the illness in some way. After all if you hear of someone with "fatigue" you immediately think of them being tired and exhausted in some way, but if you put "chronic" before it and "syndrome" after it, what picture does this put into your mind? One things for sure it does not bring to mind a picture of someone with M.E. especially if you have it or live with someone who has it.
Another reason is that a lot of people, perhaps after a short illness, are not recovering as quickly as they maybe should and their Dr may tell them that they have some sort of "Chronic Fatigue". Yes they have Chronic Fatigue but they don't have M.E. so please try to understand the big difference between these two conditions, then you may understand why there are those of us who will only use the term M.E.
Now I am no expert on M.E. all I have is my personal experience of living with it, or should that be existing with it and this is about all I can share with you. I hope to in some way dispel the myths about M.E. as a lot of people have their own interpretation of what it is and are unfortunately wrong. Or they have read in the papers or heard on the TV or radio about "Yuppie Flu" (how I now hate that term) and made up their mind there and then about what it is, without really reading that item in the papers, or really listening to that broadcast. I am also going to try to tell you of the truths about this illness, what the symptoms are and how it affects the day to day life of the M.E. patient.
Where do you look for help and information? That was the first obstacle I found when first diagnosed with M.E. It didn't help that I never knew anyone who had it, so I must admit that M.E. was a mystery to me, and yes I stand accused as I thought it was "Yuppie Flu" too. Through these pages I hope to at least point you in the right direction for help and advice, or maybe just a little bit of knowledge to what M.E. is.
The information is out there, be it in books, TV, radio, magazines, M.E. support groups and even unbelievably on the "Web". It's just that it can be hard to find when you need it most, that and the fact that if it's you who has the M.E. you don't feel well enough to go looking for it in the first place.
Thankfully the information that there is available, is much more easy to find than when this web site was initially created. Many M.E. Charities have there own fact sheets available, the books available are many and varied. There is also a great number of web sites now available, support groups and personal web pages telling of their experiences. I hope you find this site a good starting point.